Musa MK, Saga S, Blekken LE, Harris R, Goodman C, Norton C. The Prevalence, Incidence, and Correlates of Fecal Incontinence Among Older People Residing in Care Homes: A Systematic Review. J Am Med Dir Assoc. 2019 Aug;20(8):956-962.e8. doi: 10.1016/j.jamda.2019.03.033. Epub 2019 May 23.
Faecal incontinence (FI) is common among older people in care homes but is often not discussed out of embarrassment or a belief that nothing can be done. This can profoundly affect the older person including their health, social interactions, and dignity. To bring light to this subject Musa et al have examined the evidence on prevalence, incidence, and correlates of FI among older people living in care homes. The authors present detailed findings based on 23 articles that reveal the association of FI with a range of correlates including dementia, reduced activities of daily living (ADLs) and reduced mobility. At least two findings should provoke staff reflection: a high quality study finding of less FI among people with immobility issues suggesting that staff pay better attention to bowel function where mobility is lost compared to when it is reduced; and a correlation found between ethnicity and increased FI which suggests cultural influences that potentially include how staff relate to people of different race and ethnicity. Almost half of all residents were found to have FI. Attention to assessment and assistance for people with reduced ADLs and mobility, and improved staff training might help to reduce this high rate of FI. Simple measures that might greatly improve the older person’s sense of dignity and quality of life.
Li L, Zhao Y, Wang Y, Wang Z. Overview of systematic reviews: Effectiveness of non-pharmacological interventions for eating difficulties in people with dementia. J Adv Nurs. 2020 Nov;76(11):2830-2848. doi: 10.1111/jan.14492. Epub 2020 Aug 27.
Eating difficulties including changes in preferences, eating habits and appetite are common for people with dementia at advanced stages and weight loss is often of concern. For care providers it would be useful to understand what approaches to addressing eating difficulties make a difference. This systematic review addressed this question and found evidence of improved food/drink intake with environmental modifications in the form of lighting, colour, sound, and social context. Playing music was the most effective, but the type of music was important. Seating the person with dementia in the same location for every meal also helped, likely by providing a sense of familiarity and security. The value of a fish aquarium or education/training as with many of the seven interventions examined requires more investigation. These findings of easily implemented non-pharmacological approaches are useful and care providers might try some at little to no cost. But since all but one of the 18 studies included were found to be of low to critically low quality future approaches to research in this growing cohort urgently need to improve.
Rainsford S, Liu WM, Johnston N, Glasgow N. The impact of introducing Palliative Care Needs Rounds into rural residential aged care: A quasi-experimental study. Aust J Rural Health. 2020 Sep 27. doi: 10.1111/ajr.12654. Epub ahead of print.
This is not a systematic review, but it is of high relevance for aged care providers in rural Australia. The article describes implementation of the Palliative Care Needs Rounds approach to improve quality of death and dying in residential aged care. Study coordinators adapted the published Needs Rounds protocols to deliver monthly triage meetings with specialist input for 31 residents in a rural NSW facility. Surprisingly for a rural study GPs were not directly involved, and this raises questions of real world relevance and sustainability. Nevertheless, compared to 112 residents receiving usual care, participants in the study group completed significantly more advanced care plans (72% versus 46%). But, unlike the original trial, in this case there was no reduction in hospitalisations or length of stay, and in-hospital deaths actually increased. As the authors note, context is important when interpreting these outcomes. For example, in a rural setting transfer to ED may at certain times be the only way of seeing the local GP, and rural hospitals are often an extension of the community so that being and dying there is not necessarily an outcome to be avoided. More reports are needed but this study already demonstrates how important local context will be.
Rajnoveanu RM, Rajnoveanu AG, Fildan AP, Todea DA, Man MA, Motoc NS, et al. Palliative Care Initiation in Chronic Obstructive Pulmonary Disease: Prognosis-Based, Symptoms-Based or Needs-Based? Int J Chron Obstruct Pulmon Dis. 2020 Jul 3;15:1591-1600. doi: 10.2147/COPD.S254104.
The American Thoracic Society has highlighted the importance of integrating palliative care from the time of diagnosis of Chronic Obstructive Pulmonary Disease (COPD). However, palliative care is not always initiated early or at all. This review sought to determine when and how palliative care should be initiated for people with COPD. Without a “gold standard” method of prognosis, the unpredictable, see-sawing course of COPD makes referral to palliative care based on prognosis very difficult. Common symptoms across the course of the disease such as dyspnoea, fatigue, cough, cachexia, depression, or anxiety have a significant effect on the quality of life of the person and carers. A focus on these can help establish the need for palliative care in line with the person’s goals and wishes. Tools like the Dyspnea-12 score or the Multidimensional Dyspnea Profile can be useful as they measure the symptom frequency and intensity but also the physical and emotional effect on the person. The “surprise-question” needs to be used carefully with people with COPD as it has been found to be highly unreliable. Using simple open questions can facilitate discussions and explore the person’s needs.
Lee YF, Hsu TW, Liang CS, Yeh TC, Chen TY, Chen NC, Chu CS. The Efficacy and Safety of Tube Feeding in Advanced Dementia Patients: A Systemic Review and Meta-Analysis Study. J Am Med Dir Assoc. 2020 Jul 28:S1525-8610(20)30558-2. doi: 10.1016/j.jamda.2020.06.035. Epub ahead of print.
Up to 90% people in the advanced stage of dementia have swallowing difficulties (dysphagia) and difficulty with coordinating chewing and swallowing. Combined with a loss of interest in food this means that they lose weight. This scenario can be distressing for family members and carers, and the controversial question of artificial feeding can arise. This review analysed the findings of 12 studies which investigated tube feeding in advanced dementia. One third of the 5,666 study participants with advanced dementia were tube fed. Results indicate that tube feeding did not prolong survival or improve three measures of nutritional status. Tube feeding was associated with a significantly higher death rate. The authors recommend that decision-making in relation to artificial feeding in advanced dementia be person-centred and individualised. They also recommend that discussions take place early with the person with dementia and their family and carers regarding future nutrition needs and their wishes. These recommendations align with those from Dementia Australia and numerous guidelines.
Tait P, Chakraborty A, Tieman J. The Roles and Responsibilities of Community Pharmacists Supporting Older People with Palliative Care Needs: A Rapid Review of the Literature. Pharmacy (Basel). 2020 Aug 12;8(3):E143. doi: 10.3390/pharmacy8030143.
Increasingly older people approach the end of their life with one or more chronic illnesses and management of these often requires multiple medications (polypharmacy). The community pharmacist plays a role in dispensing medicines and providing information on their use and checking the safe use of medicines. This rapid review sought to summarise the international literature as to the roles and responsibilities of pharmacists supporting older people with their palliative care needs living at home or in residential aged care (RAC). The community pharmacist played an important role in liaising with the GP and other members of a multidisciplinary team, conducting medication reviews, providing guidance on deprescribing, and anticipating the need for subcutaneous medicines. Most studies focussed on the pharmacist in the RAC setting. One study outlined how a pharmacist in the general medical practice setting improved effective coordination of home medication reviews for older people living in their home and supported quality prescribing by the GP through the development of medicine screening criteria. Communication and people skills were critical to pharmacists’ ability to develop effective relationship with the network of people in their care and members of aged care teams so important to the successful facilitation of medication management.
McDerby N, Kosari S, Bail K, Shield A, Peterson G, Naunton M. Pharmacist-led medication reviews in aged care residents with dementia: A systematic review. Australas J Ageing. 2020 Aug 4. doi: 10.1111/ajag.12827. Epub ahead of print.
Over half of residential aged care facilities (RACFs) residents with dementia are prescribed more than five regular medications. This is a concern as they are vulnerable to adverse side effects. The residential medication management review (RMMR) provides the opportunity for a comprehensive assessment to optimise the benefits of medicine use and reduce risks. This review investigated models of pharmacist-led medication reviews for RACF residents with dementia and found a small body of fair-poor quality evidence. Most of the included studies focussed on the reduction of appropriateness of psychotropic medication use which resonates with concerns in Australian RACFs. The emerging evidence suggests that medicine reviews by an established multidisciplinary team can improve the appropriateness of psychotropic medication and reduction in total number of ‘sometimes appropriate’ medications. The benefit in this approach seems to be the established professional relationships and trust allow effective collaboration in the medication review process.
Jones C, Liu F, Murfield J, Moyle W. Effects of non-facilitated meaningful activities for people with dementia in long-term care facilities: A systematic review. Geriatr Nurs. 2020 Jun 20:S0197-4572(20)30187-7. doi: 10.1016/j.gerinurse.2020.06.001. Epub ahead of print.
With a focus on person-centred care in aged care, there is an increasing interest in meaningful activity for older people living with dementia in residential aged care facilities (RACFs). Meaningful activities are relevant and enjoyable to the person, and can help their physical function, emotional wellbeing, cognitive status, or behavioural problems. Non-facilitated meaningful activities are activities that a person can do or enjoy without the help of another person, such as nursing or care staff. This review aimed to summarise the existing literature to provide evidence as to the effects of non-facilitated meaningful activities for residents living with dementia. The meaningful activities included in this review were music, audiotaped conversation prepared by a family member about positive experiences from the past, and interactions with animal-like social robots, plush toys, and lifelike dolls. They showed varying benefits on agitation, emotional well-being, feelings of pleasure, sleep quality and the person’s visual and verbal engagement. These benefits were mostly only observed when the activities were taking place, that is, “in the moment”. These activities may be useful in care providing activities for people living with dementia in RACFs with limited staff and resources and during virus outbreaks when social distancing may be required.
Hickman L, Ferguson C, Davidson PM, Allida S, Inglis S, Parker D, et al. Key elements of interventions for heart failure patients with mild cognitive impairment or dementia: A systematic review. Eur J Cardiovasc Nurs. 2020 Jan;19(1):8-19. doi: 10.1177/1474515119865755. Epub 2019 Jul 26.
Mild cognitive impairment is common in older people living with heart failure. This may cause difficulty with activities of daily living, self-care, and adherence to their typically extensive treatment. Despite this, there are few intervention programmes designed to help people with heart failure and mild cognitive impairment or dementia. Six randomised control trials were included in this review of interventions for mild cognitive impairment and dementia in heart failure care. The findings suggest that nurse-led interventions can help improve heart failure knowledge, self-care and quality of life and that ongoing face-to-face or telephone contact or the monitoring of care using a mobile health app are beneficial. The role of relatives and carers was recognised as they play a critical role in providing family and person-centred care through shared decision-making and patient advocacy. mHealth technology is emerging as a way to assist self-care for people with heart failure according to their cognitive ability.
de Nooijer K, Penders YW, Pivodic L, Van Den Noortgate NJ, Pype P, Van den Block L. Specialist palliative care services for older people in primary care: A systematic review using narrative synthesis. Palliat Med. 2020 Jan;34(1):32-48. doi: 10.1177/0269216319874978. Epub 2019 Sep 28.
Not all older people will need palliative care at the end of their life, but evidence suggests that specialist palliative care services in primary care could help older people with frailty or other progressive conditions. This review looked at the referral criteria used, the health professionals involved, the outcomes already measured and potential improvements to be made. In this emerging area of research, it seems that older people continue to be referred primarily based on age and diagnosis despite recommendations that symptoms and patient needs also be included. The evidence in this area is limited, but the authors note the influence on referral of physician skills and knowledge, and nurse practitioners and social workers are highlighted as key to the coordination of care. In noting similarities in frequency and content of specialist services provided to younger groups with cancer, they also question the adequacy of this for older people who are more likely to have complex multimorbidity and fluctuating needs.
Teahan Á, Lafferty A, McAuliffe E, Phelan A, O'Sullivan L, O'Shea D, et al. Psychosocial Interventions for Family Carers of People With Dementia: A Systematic Review and Meta-Analysis. J Aging Health. 2020 Jan 19:898264319899793. doi: 10.1177/0898264319899793. Epub ahead of print.
Family carers often support people in the later stages of dementia with activities of daily living (ADLs) including eating, grooming, dressing, bathing, toileting. However, family carers are often reluctant to disclose their own psychosocial needs to health and social care providers. This review sought to understand the effectiveness of interventions to improve psychosocial needs of family carers of people with dementia. A meta-analysis performed on 22 studies revealed that psychosocial interventions, especially those based on education, made small to moderate improvements to carer burden, depression, and general health, but not overall quality of life. The authors suggest that even small improvements such as these might be clinically significant in this population, and they highlight ways that health and social care providers can support carer resilience as well as barriers that might need to be overcome.
Janus SIM, Kosters J, van den Bosch KA, Andringa TC, Zuidema SU, Luijendijk HJ. Sounds in nursing homes and their effect on health in dementia: a systematic review. Int Psychogeriatr. 2020 Jun 29:1-18. doi: 10.1017/S1041610220000952. Epub ahead of print.
Research has established an association between sounds and human health noting positive and negative effects. Aged care residents with dementia are highly sensitive to certain sounds which may be due to a reduced ability to filter or make sense of what they are hearing. This review of 35 studies investigated sources of noise in residential aged care facilities (RACFs), and the influence of this on the health of residents with dementia and staff. Understandably, common rooms and dining areas were the noisiest spaces but residents’ bedrooms at night-time were also noisy. Five studies found a reduction in agitation and an improvement in food intake when soothing music was played at dinnertime. Caregiver singing can also evoke a calmer attitude in people with dementia. While the evidence in RACFs is only just emerging, addressing general noise levels and playing music that residents like, where appropriate, are very simple measures that could already be tried.
Backhouse T, Dudzinski E, Killett A, Mioshi E. Strategies and interventions to reduce or manage refusals in personal care in dementia: A systematic review. Int J Nurs Stud. 2020 May 16;109:103640. doi: 10.1016/j.ijnurstu.2020.103640. Epub ahead of print.
This review could be of interest to those caring for older Australians with advanced dementia.
People with advanced dementia increasingly require assistance with activities of daily living (ADLs) and personal care. However, providing intimate care may be complicated by the person with dementia refusing care, for example by either verbally (saying ‘no’), moving away, stiffening the body, or responding with physical aggression. This systematic review examined strategies that have been developed to reduce refusals. Refusal behaviours were often associated with poor communication styles such as elderspeak and controlling or negative communication. In contrast, all music interventions (except humming) and methods bathing such as towel bath, person-centred showering or thermal bath reduced instances of refusal behaviours. These findings suggest that playing recorded music during care activities or communication through singing and playing instruments might be used to reduce refusal behaviours. These interventions are cheap and time efficient to implement, making them simple for anyone to immediately adopt.
Morgan T, Bharmal A, Duschinsky R, Barclay S. Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis. PLoS One. 2020 Jun 9;15(6):e0232401. doi: 10.1371/journal.pone.0232401.
This review could be of interest to those caring for very older couples living in the community.
Many oldest-old Australians (aged over 75) live with progressively declining health and uncertainty as to when ‘really sick becomes dying’. They are often cared for at home with their spouse taking on daily care for indefinite periods of time with limited help. This is an emerging area of research and this review found that these spousal carers provided a wide range of care including administration and advocating, emotional support and hands-on care tasks. They were seen to develop a range of coping mechanisms to facilitate their caring with obstacles framed as ‘challenges’ rather than ‘threats’. In this light, moving a partner to residential aged care could be viewed as a coping tactic to sustain caring rather than stop caring. For care to not disrupt the relationship, it is important for spouses to maintain their verbal and non-verbal communication. To support this, health and care professionals should ‘think couple’ and facilitate opportunities where couples can be together and be observed together, for example, at joint GP visits or community groups for both spouses.
Mataqi M, Aslanpour Z. Factors influencing palliative care in advanced dementia: a systematic review. BMJ Support Palliat Care. 2020 Jun;10(2):145-156. doi: 10.1136/bmjspcare-2018-001692. Epub 2019 Apr 3.
This review could be of interest to those caring for older Australians with advanced dementia.
People with dementia increasingly require assistance with activities of daily living (ADLs). As the advanced stage is marked with profound cognitive and physical impairment, a palliative approach is appropriate with its focus on maximising comfort and, where possible, maintaining function. Yet this systematic review of factors influencing the provision of palliative care services for people with advanced dementia found that 30% (10 of 24) of the included studies rejected palliative care as a management step or did not discuss it. Where it was included, recognition or awareness that dementia is a terminal illness was an important step in improving the quality of death as it helped the person have control over the future, allowing them to make choices and prepare for death. The review outlines both barriers and facilitators to palliative care for people with dementia, and support is available for many of these such as improved training in symptom management and communication. However, perhaps the most surprising barrier, and easiest to address, is awareness that dementia is a terminal/palliative condition. This might be a good starting point for care providers caring for older Australians with dementia.
Hemmy LS, Linskens EJ, Silverman PC, Miller MA, Talley KMC, Taylor BC, et al. Brief Cognitive Tests for Distinguishing Clinical Alzheimer-Type Dementia From Mild Cognitive Impairment or Normal Cognition in Older Adults With Suspected Cognitive Impairment: A Systematic Review. Ann Intern Med. 2020 May 19;172(10):678-687. doi: 10.7326/M19-3889. Epub 2020 Apr 28.
This review could be of interest to those caring for older Australians with dementia.
An early diagnosis of dementia can help timely access to support, information, and care planning. A formal diagnosis of dementia is made after comprehensive neuropsychological testing which is time-consuming and not always accessible. However, several brief cognitive tests are also available which are quick to administer and can be used in a primary care setting without specialist training. This review examined the usefulness of these tools. Many of the brief cognitive tests included in the review accurately differentiated clinical Alzheimer-type dementia (CATD) from normal cognition. While not sufficient for formal diagnosis they allow objective assessment for the older person with noticeable cognitive impairment and might be useful for screening prior to formal assessment. The review found that these tests are not sufficient to categorise patients with mild impairment.
Crimmins RM, Elliott L, Absher DT. Palliative Care in a Death-Denying Culture: Exploring Barriers to Timely Palliative Efforts for Heart Failure Patients in the Primary Care Setting [published online ahead of print, 2020 Apr 22]. Am J Hosp Palliat Care. 2020;1049909120920545.
This review could be of interest to those caring for older Australians with heart failure.
Heart failure (HF) is increasingly common in elderly people. In HF patients, symptoms such as shortness of breath, pain, anorexia, fatigue, and depression are often overlooked and undertreated. Late referral to palliative care eliminates the opportunity to discuss advanced care planning, manage troublesome symptoms, and improve overall quality of life at a more functional stage in the disease. This review examined barriers to the early initiation of palliative care for advanced heart failure (AHF) patients in the primary care setting. Recognising the fluctuating course of HF, the findings of this review recommend an annual heart failure review (AHFR) so that both the person and the doctor can discuss physical and psychosocial needs and goals of care. Conducting an AHFR provides a structured approach to the management of AHF which heightens the focus on advance care planning and a more proactive approach to palliative care. The Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF) is a rapid screening measure developed to assess palliative care needs of patients with HF. It is an established, well-supported tool and weaving this into the patient’s AHFR would further facilitate the early integration of palliative care for HF patients. The authors call for training and re-education in HF care for doctors, so that optimal care is provided.
Dodd SR, Payne SA, Preston NJ, Walshe CE. Understanding the Outcomes of Supplementary Support Services in Palliative Care for Older People. A Scoping Review and Mapping Exercise [published online ahead of print, 2020 Mar 20]. J Pain Symptom Manage. 2020;S0885-3924(20)30138-X. doi:10.1016/j.jpainsymman.2020.03.010
This review could be of interest to those caring for older people in the last 12-18 months of their life.
Public health and compassionate community approaches have inspired services provided by volunteers, community networks, and non-clinical charitable organisations. This type of support often focuses on practical, psychosocial, and spiritual needs, for example, loneliness, belonging, or social support. This review explored what older people, their family carers, and health and social care professionals see as the key concepts of these supplementary or volunteer end-of-life services for older people. Four main concepts were identified: (1) enriching relationships, (2) greater autonomy and perceived control, (3) knowing more, and (4) improved mental health. Underpinning these concepts was the sense of holistic, personalised and attentive care that allowed the person to feel comfortable with their situation and be able to broach difficult or even taboo topics. These concepts are not commonly assessed with older people at the end of their life so the authors mapped these concepts to measurement tools that are used. The tools with the greatest crossover were the McGill Quality of Life Questionnaire (McGill QOL), ICECAP-Supportive Care Measure (ICECAP-SCM), Palliative Care Quality of Life Instrument (PQLI), and Quality of Life at End of Life (QUAL-E). Service providers and researchers looking to measure impact of supplementary services could use these tools as appropriate for their clients.
Ludlow K, Churruca K, Mumford V, Ellis LA, Testa L, Long JC, et al. Unfinished Care in Residential Aged Care Facilities: An Integrative Review. Gerontologist. 2019 Nov 27:gnz145. doi: 10.1093/geront/gnz145. Epub ahead of print.
This review could be of interest to those caring for older adults in residential aged care facilities.
'Unfinished care' is a term used to describe care that is omitted (in part or in whole), left undone or delayed. It also describes the processes of prioritising or rationing care in response to a workload that is too great for the available time and resources or as a way to manage competing demands. This notion is important considering the increasing care dependency of older Australians entering residential aged care facilities (RACFs). This integrative review investigated the current state of knowledge of unfinished care in RACFs and to identify knowledge gaps in the field. Seven of the thirteen studies were conducted in Australia and New Zealand. The review outlines that unfinished care is widespread in RACFs and it classifies 32 types of unfinished care and 50 associated factors. “Resources” was the most commonly reported category of factors associated with unfinished care, for example, staffing levels and skill mix, access to supplies and equipment, and funding. The types of care most often reported as missed, rationed, delayed or assigned as a lower priority were assisting with toileting/changing pads, communication with residents and families, mouth care/oral hygiene, and medication management (administration and review). This review has important insights for people looking to improve the care of older people.
Moehead A, DeSouza K, Walsh K, Pit SW. A Web-Based Dementia Education Program and its Application to an Australian Web-Based Dementia Care Competency and Training Network: Integrative Systematic Review. J Med Internet Res. 2020 Jan 22;22(1):e16808. doi: 10.2196/16808.
This review could be of interest to those caring for older Australians with dementia.
Quality dementia education and training is important in building a highly skilled dementia care workforce. Clinicians seek education that is user-friendly, affordable, and accessible with available peer support, supervision, and access to dementia champions, especially for those working in rural and remote regions. Web-based education has the potential to meet these requirements. This review conducted in Australia explored the key features associated with an effective and functional web-based education program.Fromprogram. From 46 included studies, 14 features were identified of which the most commonly cited were:
- Is self-directed and self-paced
- Is interactive
- Measures using questionnaires, feedback and surveys of satisfaction
- Nurtures critical thinking
- Is facilitated, with access or instructors, or mentored.
Learners engaged in web-based studies require a level of commitment and willingness, the ability to develop self-direction, and a capacity for flexibility. Evidence suggests that organisational support and a short, sharp format to learning modules can help overcome barriers such as lack of time and competing interests. The second part of the review mapped the 14 fetaures to the to the Dementia Care Competency and Training Network (DCC&TN ) with a connection found between all features and their inclusion within the content and structure of the DCC&TN.
Rivett E, Hammond L, West J. What influences self-perceived competence and confidence in dementia care home staff? A systematic review. Psychogeriatrics. 2019 Sep;19(5):440-456. doi: 10.1111/psyg.12422. Epub 2019 Feb 26.
This review could be of interest to residential facilities providing care for older Australians with dementia.
A perceived lack of competence in caring for people with dementia can impact on the confidence of those delivering care, and vice versa. Quality dementia education and training can improve the quality of care provided by staff, but can also improve staff motivation, wellbeing, morale and retention. This systematic review aimed to establish how residential dementia care staff perceived their own competence and confidence in relation to the care they deliver, whether there are any specific interventions that improve these feelings, and whether feeling more competent and confident impacts on care delivery. The majority of the 14 included studies focussed on understanding and managing behavioural and psychological symptoms of dementia (BPSD), with communication and interaction skills being the next most addressed area of study. The one Australian study used an outreach service to coach care staff in 20 RACFs on the management of BPSD while they were on shift. As well as significantly improving the sense of confidence in staff, there was a decrease in presentations and admissions of residents to emergency departments suggesting that staff felt more able to manage behaviours that they had previously found challenging. The most successful interventions were those that used live coaching and that taught reflective and independent problem-solving skills. This suggests that teaching enhanced by practical support is more effective than teaching alone.
Anderson RJ, Bloch S, Armstrong M, Stone PC, Low JTS. Communication between healthcare professionals and relatives of patients approaching the end-of-life: A systematic review of qualitative evidence. Palliative Medicine. 2019;33(8):926-41.
This review could be of interest to those caring for older adults in primary care or aged care settings.
This review investigated the characteristics of communication about prognosis and end-of-life care between health professionals and the family of people approaching the end of their life. Most of the 31 qualitative studies were from the acute care setting particularly ICU. Nurses often explained what treatments could mean for the person and brought together information from different sources to help families understand the most suitable options. Other allied health professionals, particularly social workers, were identified as playing an important role in communication with families.
Key strategies which aid effective communication with family members of a person approaching the end of their life include:
- highlighting the person’s deterioration to aid understanding and decision-making
- collaborative decision-making through references to person’s wishes and providing options
- highlighting continuing care by explaining comfort care
- tailoring information to individual understanding and readiness to discuss dying
- honesty and clarity to avoid false hope
- providing information repeatedly and in small chunks
- use less language that is relatively simple and not technical.
For health professionals, training in communication skills was considered important as was embedding reflective practice into a supportive work environment.
Havreng-Théry C, Giner-Perot J, Zawieja P, Bertin-Hugault F, Belmin J, Rothan-Tondeur M. Expectations and Needs of Families in Nursing Homes: An Integrative Review. Med Care Res Rev. 2020:1077558720907183-.
This review could be of interest to those caring for older adults in residential aged care facilities.
The number of Australians who are residents of an aged care facility (RACF) is increasing as is their level of dependency on entry. Family members have often provided care for their relative prior to admission to RACF. An appropriate welcome of the older person and their family can form the basis of a positive RACF experience, contribute to a healthy and caring staff-family relationship and avoid conflict or complaints. To better understand these positive interactions, this review explored the expectations and needs of the relatives of RACF residents Seven of the 53 included studies were from Australia. Families expect holistic and person-centred care that respects the dignity of the resident. They wish to establish a collaborative, honest, and mutually trusting relationship with staff and doctors and to be able to engage with the resident and, for some, in care. Family see the information and knowledge that they can provide about the resident as important and wish this to be listened to and acknowledged. Although they often appreciate being involved in decisions, they want doctors to appreciate how difficult it can be for them to make decisions in critical situations. They want to understand the person’s illness and to know when the person is entering the terminal phase of life. It is important to them that the person receives appropriate palliative care. Finally, families want a pleasant environment, open to nature, and with spaces that encourage family ties.
Asano R, Abshire M, Dennison-Himmelfarb C, Davidson PM. Barriers and facilitators to a ‘good death’ in heart failure: An integrative review. Collegian. 2019;26(6):651-65.
This review could be of interest to those caring for older adults living with heart failure.
An estimated 105,000 Australians have heart failure of which nearly two thirds are over the age of 65. The most common symptoms experienced by a person in advanced heart failure are pain, dyspnoea, fatigue, and depression. With advances in medicine, more people with heart failure are living longer with higher symptom burden, disabilities, and reduced quality of life. Yet, only a small percentage receive palliative care. This review synthesised the research evidence related to how elements of heart failure care may contribute to a good death. How people define a “good death” varies but it can include the minimising distress and suffering, care that respects the wishes and values of the person and the family, and the ability to participate in care planning and perhaps future arrangements to ease the burden on the family. Many people living with heart failure want to die at home and without life-sustaining treatment at the end of life. However, this is often not their experience. The use of an advanced heart failure care program reduced the number of hospital readmissions and emergency department visits and the cost of care. Palliative care was shown to decrease the number of days of hospitalisation before death and increase the likelihood of a home death. Care delivered by a multidisciplinary palliative care approach (nurse practitioner, palliative care doctor, and counsellor) showed an improvement in quality of life, anxiety, depression, and spiritual well-being in patients with advanced heart failure. This review highlights disease-specific factors that prevent people with heart failure from receiving palliative care, including difficulty predicting mortality, severity of disease, and lack of knowledge concerning prognosis. If policies and guidelines can be introduced to respond to these factors, timely palliative care could help these older Australians and their family to experience what they perceive as a good death.
Bauer M, Haesler E, Fetherstonhaugh D. Organisational enablers and barriers to the recognition of sexuality in aged care: A systematic review. J Nurs Manag. 2019 May;27(4):858-868. doi: 10.1111/jonm.12743. Epub 2019 Feb 13.
This review could be of interest to those caring for older adults in primary care or aged care settings.
Sexuality and sexual activity are often difficult topics to broach. Understanding what factors promote or inhibit the recognition of sexuality, sexual health and sexual identity in the care of older people is important given the strong connections between sexuality and quality of life. This systematic review examined the organisational characteristics and practices that promote or inhibit the recognition of sexuality in the care of older people in health and aged care settings. The 34 studies reviewed included older people using health and aged care services, family, healthcare professionals, care staff and managers in a range of clinical settings. This review recognises nurse managers’ ability to act proactively and take risks to promote positive change which can include support for sexuality and sexual expression of older people. Other recommendations were for organisations and their nursing leaders to:
- adopt a sex‐positive, LGBTI‐inclusive, organisational philosophy that is expressed through policies, procedures, staff attitudes and care practices (eg. safe and private spaces facilitate discussion of sexuality with older clients, policies that detail the opportunity for residents for expression of sexuality, policies that allow room-sharing or conjugal visits)
- provide education, role modelling and opportunities for open discussion for all stakeholders (eg. staff have the skills to promote sensitive language and behaviour, recognition and acceptance of older LGBTI people is included in staff education)
- promote opportunities for older people to make personal connections and express their sexual identity (eg. safe private spaces that facilitate touch, physical contact or sexual expression; provision of condoms and access to sex workers)
- maintain an environment and amenities that support private sexual experiences (eg. provision of double beds, and spaces that are respected as 'do not disturb').
These authors have published the Sexuality Assessment Tool (SexAT) (2.37MB pdf) for residential aged care facilities.
For more on this topic in a palliative care context, read the Intimacy and Sexuality - palliAGED Evidence and Intimacy and Sexuality - palliAGED Practice.
Chenoweth L, Stein-Parbury J, Lapkin S, Wang A, Liu Z, Williams A. Effects of person-centered care at the organisational-level for people with dementia. A systematic review. PLoS One. 2019 Feb 22;14(2):e0212686. doi: 10.1371/journal.pone.0212686.
This review could be of interest to those caring for older adults living with dementia.
Person-centred care (PCC) involves developing a thorough understanding of the person and consideration of their cultural background, personal history, social and family networks and preferences for activities in designing their care. Successful implementation of PCC across an organisation sees staff acquire PCC knowledge, skills and attitudes in an environment that supports a cultural and structural change supported by sufficient resources. This systematic review looked at how effective PCC interventions delivered at the organisational level for people living with dementia were in relation to quality of life, mood, neuropsychiatric symptoms (eg. agitation, depression) and function. Organisational-level interventions included a combination of: staff education, training, guidance and exposure to role modelling in how to understand and interpret verbal and non-verbal communication from the perspective of the person with dementia; and providing the person with interesting, purposeful, and meaningful things to do in their daily life, in consultation with the person, their family and carers. Person-centred care and leisure/social activities all included approaches that were meaningful for the person, such as communicating with them about their memories of family, friends, places and events. When the whole care team employed this approach, it was found to increase the person’s participation in care and leisure/social activities, which in most studies also improved psychosocial and functional outcomes, albeit non-significantly. Other results showed a significant effect for increased quality of life but not for a reduction in agitation and depression.
Collingridge Moore D, Payne S, Van den Block L, Ling J, Froggatt K; PACE. Strategies for the implementation of palliative care education and organizational interventions in long-term care facilities: A scoping review. Palliat Med. 2020 Feb 3:269216319893635. doi: 10.1177/0269216319893635. Epub ahead of print.
This review could be of interest to those caring for older adults in residential aged care facilities.
Increasingly, residential aged care (RAC) is the final place of care for residents who live with more than one chronic condition, and for those with dementia or high levels of cognitive impairment. RAC facilities require a specific approach to palliative care that is appropriate to needs of residents and staff. Interventions to improve palliative care have been shown to improve the quality of care received by residents yet the factors that facilitate their uptake in RAC are not well understood. This review set out to identify the implementation strategies used to support palliative care interventions in RAC and the facilitators and/or barriers to their implementation. The four implementation strategies that were explored were facilitation, education/training, and internal and external engagement. An audit of current practices allowed staff to reflect on current practices and the need for improvement. Buy-in from staff was important and can be supported via incentives for attendance at education sessions (e.g. certificate, CPD credits, payment for attendance). Face-to-face workshops or on-the-job training can facilitate uptake of new skills. Involvement of staff with leadership qualities (informal leaders) can inspire staff in embracing change and champion the intervention. These facilitators moved interventions to sustained changes in practice and improvement in palliative care.
Bray J, Brooker DJ, Garabedian C. What is the evidence for the activities of Namaste Care? A rapid assessment review. Dementia (London). 2019 Sep 24;1471301219878299. doi: 10.1177/1471301219878299.
This review could be of interest to those who care for residents with dementia.
Research has shown that there is scope to improve the quality of life of people with dementia through care that provides them with support at an appropriate level. Namaste Care is a structured programme developed to meet the sensory and emotional needs of residents with advanced dementia and enrich their quality of life. The aim of Namaste is to use sensory stimulation through touch, music, light, aromas and connection to nature to structure the ‘empty time’ when residents are not engaged in personal care or mealtimes. The aim of this review was to critically appraise activities that are commonly utilised as components of Namaste Care. It was found that aromas (especially lavender), engaging with dogs, dolls, various forms of music (eg. background music, singing, personalised music, one-to-one and within groups), nature, lighting, various forms of touch/ massage and sensory interventions (including Snoezelen) all appeared to be effective. However, the overall amount and level of evidence for each component was inconsistent. For many of the interventions, researchers highlighted the need to tailor delivery to the person by observing personal preferences by offering choice and being aware of allergy issues (eg. aromas and animals). There was generally agreement on the importance of human presence and attention, and of caring touch as perhaps the most consistently influential element contributing to a positive impact on the wellbeing of residents with advanced dementia. Helping staff and families to understand the rationale behind this programme and the potential benefits was important.
Gautam S, Neville S, Montayre J. What is known about the spirituality in older adults living in residential care facilities? An Integrative review. Int J Older People Nurs. 2019 Jun;14(2):e12228. doi: 10.1111/opn.12228. Epub 2019 Mar 1.
This review could be of interest to those caring for older adults living in residential care facilities.
Spirituality is the search for purpose, meaning and connectedness and can occur with or without any religious affiliation or practice. For many people, spirituality is important throughout life and for many older people, spiritual care is especially important at the end of life. Spirituality contributes to quality of life and wellbeing and has been associated with positive emotional and mental health and the ability to cope in a time of stress. This integrative review examined research on spiritual needs and care from the perspectives of older adults, nurses or carers in residential aged care facilities (RACFs). Of the seven included studies, two were conducted in Australia. The spiritual needs of older adults living in a RACF can differ from those who are living in their own community as the context, sources of connection and access to resources can vary in a RACF. Residents value the opportunities to connect with familiy and friends, and to develop trusting relationships with nurses, carers and other residents, and see this as an important part of spiritual care. They also value the opportunity to take part in social interactions and meaningful events and to connent to nature. Spiritual care in residential care facilities is linked to information gathering, maintaining family connections and companionship, discussing end-of-life issues, providing counseling, and religious guidance. Providing regular staff education sessions on the importance of addressing spiritual needs, what spirituality is and how to undertake a spiritual assessment, as well as ongoing supervision and support to staff has been identified as enablers to the successful provision of spiritual care in a RACF.
For more on this topic in palliAGED read the spiritual care evidence and spiritual care practice guidance.
Prizer LP, Zimmerman S. Progressive Support for Activities of Daily Living for Persons Living With Dementia. Gerontologist. 2018 Jan 18;58(suppl_1):S74-S87. doi: 10.1093/geront/gnx103.
This review could be of interest to those caring for people living with dementia.
The progressive decline of dementia is accompanied by a progressive need for support with activities of daily living (ADLs). This need for supportive care generally follows the order of bathing, dressing, grooming, toileting, walking, and eating so much so that certain challenges typify a stage of dementia. For example, challenges with dressing in moderate dementia, toileting in moderately severe dementia, and the need for support with eating in severe dementia. This review summarises the grey and peer-reviewed literature of dementia care practices for one early-stage, one middle-stage, and one late-stage ADL loss, that is, dressing, toileting, and eating/nutrition. Fifty-nine sources of information (guidelines and peer-reviewed research) provided information on 74 supportive care practices. For example, simple verbal instructions for dressing and sequential arrangement of clothing were linked with improved ability to dress and decreased need for assistance. Positive reinforcement and reassurance (as part of multi-component interventions), verbal reminders to use the bathroom, and avoiding caffeine and fluids in the evening decreased incontinence episodes. Verbal prompts and encouragement to eat increased eating and weight (as part of multi-component interventions) and playing music during meals decreased agitation and increased food consumption. The authors emphasise that care aimed at optimising ADL function should include the person’s functional and cognitive ability to perform the activity. The importance of individualised and person-centred care is also emphasised. More than one third (38%) of the practices were not from evidence-based guidelines. However, they provide pragmatic advice related to basic human values, such as dignity.
Nasu K, Konno R, Fukahori H. End-of-life nursing care practice in long-term care settings for older adults: A qualitative systematic review. Int J Nurs Pract. 2019 Jul 30:e12771. doi: 10.1111/ijn.12771. [Epub ahead of print]
This systematic review could be of interest to all those who care for residents not just nurses.
Residents of aged care facilities often have complex health needs with a varying trajectory of decline and dying which makes care in RACFs challenging. End‐of‐life (EoL) care is support for people in the last months or years of life which encompasses physical, spiritual, and psychosocial assessment, treatment, and care. It is one of the essential competencies of nurses working in residential aged care facilities (RACFs). This review of 20 studies highlights the multidimensional role that nurses assume in coordinating care, mediating wishes and decisions about EoL care, facilitating a comfortable death, and supporting families and carers. Drawing on international insights the review found that nurses need emotional support to cope with resident deaths, but also resources to allow them to provide individualised and compassionate care. Their role in advocating for residents can limit unnecessary treatments, allow residents to die with dignity, and help relatives cope with death. Nurses play an important role in coordinating care provided by a team of health professionals. They would like education and training to negotiate and collaborate with members of the multidisciplinary team and that the team has a good understanding of each profession’s knowledge and skills. Although drawing on studies completed in different countries, the findings provide useful insights into the challenges likely to be faced by nurses coordinating care in aged care facilities.
The Royal Commission into Aged Care Quality and Safety has recently published a research paper on staffing levels in Australian in RAC (817kb pdf).
Shrestha S, Poudel A, Steadman K, Nissen L. Outcomes of deprescribing interventions in older patients with life-limiting illness and limited life expectancy: a systematic review. Br J Clin Pharmacol. 2019 Sep 4. doi: 10.1111/bcp.14113. [Epub ahead of print]
This systematic review conducted in Australia could be of interest to all those who care for older Australians approaching the end of their life.
Older patients approaching the end of their life continue to receive preventive medicines or medicines that are not prescribed as symptomatic treatment. This is despite evidence which associates them with poor health outcomes such as reduced quality of life (QOL), adverse drug reactions, falls, hospitalisation and mortality. It is, however, acknowledged that the deprescribing of inappropriate medications in these patients is complex due to physiological changes in this group and the lack of deprescribing guidelines. This systematic review of nine studies showed that a range of deprescribing interventions in older patients with life-limiting illness (LLI) and lower life expectancy (LLE) are effective. This review also suggests a decline in mortality with deprescribing but uncertain impact on QOL, number of falls, and other clinical outcomes. That mortality did not increase as a result of deprescribing of potentially inappropriate medications is of itself an important finding.
Domínguez-Chávez CJ, Salazar-González BC, Murrock CJ. Use of Music Therapy to Improve Cognition in Older Adults With Dementia: An Integrative Review. Res Theory Nurs Pract. 2019 May 1;33(2):183-195. doi: 10.1891/1541-65220.127.116.11.
This systematic review could be of interest to all those who care for older Australians living with dementia.
Music therapy utilises musical experiences to actively support people to improve their health, functioning and well-being. It is a non-invasive and inexpensive complementary therapy gaining attention for its use in nursing homes, hospitals, day-care centres to help people living with dementia. There is evidence that reports that music therapy for older people with dementia is associated with improvement in their psychological symptoms and behaviour, such as anxiety, agitation, and irritability. This review of international studies investigated the effect of music therapy on cognition in older adults with varying levels of dementia. Three of the five included studies reported a significant effect on global cognitive function or higher cognitive functions (attention, memory/recall/registration, executive function, orientation). This could be because music acts as a complex stimulus that activates various brain structures associated with cognition, manages to stimulate memory, and evocation of positive images and memories. These three studies had music therapists delivering the music therapy sessions. In contrast, the studies with no effect involved older people with more advanced dementia and were delivered by psychologists or occupational therapists or people without education in music therapy. Future studies with larger sample sizes and more rigorous methodology will provide a stronger evidence base.
Batchelor F, Hwang K, Haralambous B, Fearn M, Mackell P, Nolte L, et al. Facilitators and barriers to advance care planning implementation in Australian aged care settings: A systematic review and thematic analysis. Australas J Ageing. 2019 Sep;38(3):173-181. doi: 10.1111/ajag.12639. Epub 2019 Mar 14.
This systematic review conducted in Australia could be of interest to all those who care for older Australians.
Advance care planning (ACP) is where a person plans for their future care by recording their preferences and values. ACP is particularly important for older people with chronic and life-limiting illnesses as they have a higher risk of losing the ability to make or communicate their preferences for care. Advance care planning helps people receive the care in line with their preferences, yet uptake remains low in Australia including in residential aged care. The review highlights that involvement in ACP of different members of the aged care and health care team can help facilitate ACP discussions. Tailoring the discussions to the person’s needs and circumstances (i.e. taking a person-centred approach) can help remove the taboo nature of ACP for older people and empower them to reflect on their life and make decisions. Aged care workers and health professionals can best deliver ACP if they have enough the time and skills to discuss ACP and they receive relevant training that does not demand too much time.
Knopp-Sihota JA, Dirk KL, Rachor GS. Factors Associated With Pain Assessment for Nursing Home Residents: A Systematic Review and Meta-Synthesis. J Am Med Dir Assoc. 2019 Jul;20(7):884-892.e3. doi: 10.1016/j.jamda.2019.01.156. Epub 2019 Mar 23.
This systematic review conducted could be of interest to nurses, GPs and allied health professionals who care for residents in aged care facilities.
Persistent pain increases with age and illness, reaching its highest levels among older people in residential aged care facilities (RACFs). Pain is common in chronic progressive illness and may change as the illness progresses. Unrecognised and poorly managed pain can show itself in many ways including decline in function, depression, agitation, aggression or wandering. Pain also has a negative effect on formal and informal care providers which can result in burnout. Good pain management can improve quality of life for both residents and their care providers. The use of touch or observation of resident behaviour was seen to help pain assessment and improved residents’ level of comfort with staff. Tailoring the assessment to the person’s circumstances (i.e. taking a person-centred approach) was beneficial. Examples included
1) assessing pain in the resident’s first language, where possible
2) involving family carers to understand how individual residents expressed their pain
3) using nonverbal pain assessment tools, behaviour charts, picture boards, and written communication to assess pain in residents with cognitive impairment.
ACF staff who attended training or used resources had more positive attitudes and beliefs of pain and ageing, and a greater likelihood of conducting pain assessments. Using standardised assessments as part of routine pain assessment practices was also beneficial.
Komalasari R, Chang HC, Traynor V. A review of the Rowland Universal Dementia Assessment Scale. Dementia (London). 2019 Oct-Nov;18(7-8):3143-3158. doi: 10.1177/1471301218820228. Epub 2019 Jan 3.
This systematic review could be of interest to nurses, doctors and allied health professionals working with older Australians with cognitive impairment from culturally and linguistically diverse (CALD) background.
The assessment of dementia is crucial to care of the person living with dementia. Standard assessment tools, such as the Mini-Mental State Examination (MMSE), are not easy to translate and use for people from a CALD background. The Rowland Universal Dementia Assessment Scale (RUDAS) tool was developed in Australia. It has been tested in populations other than those for which it was developed (i.e. validated) for assessing clients from several language groups across Australia and for Aboriginal and Torres Start Islander peoples in NSW. This review examined the degree to which the RUDAS tool produces stable and consistent results (i.e. reliability) when adapted for use among older people living outside of Australia. The review compared RUDAS to MMSE and found benefits to using RUDAS including: it is short and easy to administer and does not include many reading tasks; staff can quickly learn how to use the tool; and that gender, years of schooling, or cultural and linguistic background do not affect the results of the test. Although the intent of this extensive review was to inform decisions on adapting RUDAS for use in Indonesia, it confirms that it is a relevant tool for the multicultural Australian population.
Cunningham N, Cowie J, Watchman K, Methven K. Understanding the training and education needs of homecare workers supporting people with dementia and cancer: A systematic review of reviews. Dementia (London). 2019:1471301219859781.
This review could be of interest to community aged care managers and educators.
We know that people with dementia often live with other conditions (multimorbidities) including cancer, and many prefer to remain at home where possible. The types of support services they access will depend on their individual needs. Ideally homecare will offer choice and flexibility and will be person-centred. To meet these needs training of careworkers caring for people with dementia in their home is required. This umbrella review (a systematic review of reviews) outlines the facilitators and barriers to effective training for careworkers supporting people with dementia and cancer living at home. Three of the thirteen included studies were conducted in Australia. Some factors identified in the included studies which support effective learning, motivation for ongoing learning and/or improved workplace wellbeing were:
- training which includes face-to-face group work and shared-team or -group learning
- training which is sensitive to different skill levels and prior educational experiences
- training for person-centred or needs-based care rather than task-focused and time-focused care
- training and preparation to manage the intimacies of close-caring and personal boundary issues
- training which includes self-care
- ongoing motivational support with student engagement offering learning incentives
- positive organisational learning culture and management support that includes continued mentoring and supervision.
Karacsony S, Good A, Chang E, Johnson A, Edenborough M. An instrument to assess the education needs of nursing assistants within a palliative approach in residential aged care facilities. BMC Palliat Care. 2019;18(1):61.
Careworkers (personal carer, carer assistants, nursing assistants, care staff, aged care worker, personal carer) are a major part of the Australian aged care workforce. They provide the most direct care to residents, and are, therefore, best placed to identify and support residents’ physical, psychological, emotional and spiritual needs, and provide support to family carers. When caring for residents approaching the end of their life, careworkers require palliative care knowledge and essential skills and positive attitudes to dying and death. Yet, many are not trained in palliative care and this has been recognised as a priority area. To know what training is needed, we need to be able to assess careworker understanding. Australian researchers have collaborated with careworkers and aged care experts from four professional and industry groups to develop the PANA (Palliative Approach for Nursing Assistants) Instrument to measure careworker knowledge, skills, and attitudes. This instrument consisting of three questionnaires can be used to determine educational needs of careworkers relative to their role and responsibilities in providing care with a palliative approach. Key indicators most associated with patients’ quality of life reported by bereaved families are whether health professionals, including careworkers, provided the desired physical comfort and emotional support to the dying person, supported shared decision-making, treated the dying person with respect, attended to the emotional needs of the family, and provided coordinated care. These are all areas identified in the PANA questionnaires. This article describes the results of the final phase of this project where the PANA Instrument was tested to determine the degree to which it is likely to be true and free of bias (systematic errors) (i.e. the instrument’s validity). Approximately 350 careworkers from 17 residential aged care facilities across metropolitan Sydney participated. The results provide preliminary evidence for the validity and reliability (degree to which results obtained by a measurement procedure can be replicated) of the PANA Instrument. Careworkers’ skills did not vary with level of experience (time in nursing assistant role) which implies that careworkers' skills remain static. However, participants who had been in a careworker role for more than five years demonstrated significantly more positive attitudes than those with less experience. For the two-thirds of participants not born in Australia, a total of 52 countries were identified as country of birth. This points to the need for cultural awareness to be included in careworker training.
Wied TS, Knebel M, Tesky VA, Haberstroh J. The Human Right to Make One's Own Choices - Implications for Supported Decision-Making in Persons with Dementia: A Systematic Review. Eur Psychol. 2019;24(2):146-58.
Across Australia legislation regarding decision-making capacity assumes that a person has capacity, unless it can be proven that they do not. People with dementia (PwD) eventually lose the capacity to make informed decisions. The laws in Australia consider whether the person can understand the information being given, keep it in mind long enough to make a decision, and communicate their decision to another person. Supporting a PwD to make decisions means respecting the person’s independence whilst providing protection. This can be difficult to balance. This systematic review investigated strategies to support decision-making to help PwD, and what PwD need and look for. Two of the eleven included studies were conducted in Australia. The support strategies and interventions identified in the studies had been developed by practitioners and PwD. To assist the PwD to understand information several authors recommended: 1) clear, simple speech and the use of lists, visual aids, illustrations and props, 2) presenting information with few options, 3) meeting in a quiet, uncluttered space with minimal noise, objects and people 4) using questions to check if the PwD had understood. PwD reported that they appreciated decision topics being introduced slowly and support being given subtly so that they felt involved in the process, supported to express their choices without too strong a sense of expectation. The authors emphasise the complexity of this issue and the ethical considerations in trying to balance the level of information provided, the comfort of the PwD and the possibility of misleading the PwD.
Xiao J, Chow KM, Liu Y, Chan CWH. Effects of dignity therapy on dignity, psychological well-being and quality of life among palliative care cancer patients: A systematic review and meta-analysis. Psychooncology. 2019 jun 27.
Dying with dignity is a core element of good palliative care. Dignity Therapy (DT) provides the opportunity for a person to reflect on and share the moments that have shaped their life and to create a legacy document. The final legacy document is then presented to the person who may share it with family and friends. The aim of this systematic review was to evaluate the effects of DT on dignity, psychological wellbeing, and quality of life (QoL). Two of the eight included studies (four randomised controlled trials and four quasi-experimental studies) were conducted in Australia. Although this review did not focus on older people, most participants were aged over 65 years. The participants were under palliative care for incurable advanced cancer and participated in dignity therapy. The findings of this study and previous studies indicate that the effects of DT on dignity, psychological wellbeing, and QoL on terminally ill patients are inconsistent. The effect on depression and anxiety were positive yet not significant. Various forms of bias were identified in all eight included studies. The authors noted that formal DT training is important for the quality of DT. Future research should be qualitative and quantitative and include the family.
Best M, McArdle MB, Huang YJ, Clayton J, Butow P. How and how much is spirituality discussed in palliative care consultations for advanced cancer patients with and without a question prompt list? Patient Educ Couns. 2019 Jun 19.
Spirituality describes a person’s connections to other people, to the natural world, or to what gives them meaning and purpose. Spirituality contributes to quality of life and wellbeing and has been associated with the ability to cope in a time of stress. For many people, spirituality is important throughout life. Spiritual care may be especially important for older people at the end of life. People at the end of their life may not raise the subject of spirituality with their doctor because they may not be ready for the discussion or they believe that the doctor may not have time, interest or a role in these discussions. This study investigated spirituality in palliative care consultations for advanced cancer patients. Although this study was not focussed on older people, the average age of the 174 participants was 65 years. Eighty-seven palliative care consultations were recorded and analysed. Spirituality was discussed in just over half the consultations, raised by the doctor 51% of the time and by the patient 38% of the time. Palliative care patients who were asked about their concerns by the doctor were four times more likely to have spirituality discussions than those who were not asked. Most of these conversations focussed on peace (emotional peace of mind, a sense of comfort, or harmony) but also faith and spiritual distress. A question prompt list (QPL) provided to 90 patients prior to the consultation, did not significantly increase the discussion of spirituality during the consultation. This suggests that conversations on spirituality need to be started by physicians. Many physicians recognise the importance of their role in screening patients for spiritual concerns and that training in spiritual discussions is important for appropriate referrals.
Westbury JL, Gee P, Ling T, Brown DT, Franks KH, Bindoff I, et al. RedUSe: reducing antipsychotic and benzodiazepine prescribing in residential aged care facilities. Medical J Aust. 2018 May 21;208(9):398-403.
Some aged care facility residents require psychiatric medication with sedating properties (i.e. antipsychotics, benzodiazepines, sedating antidepressants) to treat a mental illness such as schizophrenia, bipolar disorder, severe anxiety states and major depression. Residents with dementia may also experience very high levels of distress, hallucinations and/or pose a risk of harm to themself or others. In these cases, prescribing antipsychotics is justified provided use is monitored and the lowest effective dose is taken for a short amount of time. But antipsychotic use is also associated with severe risks including falls, stroke, pneumonia and death. The over-use of antipsychotics has often been reported in Australian residential aged care facilities (RACFs). To try and reduce over-use, the Reducing Use of Sedatives (RedUSe) intervention reported in this article was designed to promote the appropriate use of antipsychotics and benzodiazepines in RACFs. It involves three main approaches; medication audit and feedback, staff education, and interdisciplinary case review. Based on outcomes from 150 RACFs (with 12,157 residents) this report shows that the proportions of RACF residents prescribed antipsychotics and benzodiazepines reduced significantly. Four in ten of the residents taking antipsychotics at the beginning of this study had either stopped taking them or had their dose reduced. Although it was not clear which RedUSe approach was the most influential the strategies were thought to build upon each other, starting with awareness raising by dissemination of local prescribing data, reinforced by staff education, and followed by interdisciplinary review. It is suggested that the RedUSe program should be available in all Australian RACFs.
Detering KM, Buck K, Ruseckaite R, Kelly H, Sellars M, Sinclair C, et al. Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study. BMJ Open. 2019 Jan 15;9(1):e025255. doi: 10.1136/bmjopen-2018-025255.
An Advanced Care Directive (ACD) is a written advance care plan that is completed and signed by a competent adult and either recognised by common law (non-statutory ACD) or recognised under legislation (statutory ACD). Although regarded as good practice and often promoted, the question often asked is how many people actually complete an ACD? In this study records from 2,285 older Australians at 51 different sites of care showed that approximately one-third of these older Australians had at least one ACD. But very few had completed a statutory ACD. Residents of residential aged care facilities (RACF) were more likely to have an ACD than older people in hospitals or general practice. People with functional impairment were also more likely to have an ACD. Almost half of the residents had an ACD compared to two in ten people in hospitals and less than one in ten people in general practice. For the true potential of ACP to be achieved community awareness and uptake will need to increase. The value of providing training and support for clinicians and aged care workers and improving storage and accessibility of ACDs at the point of care is discussed. The article also outlines the prevalence and value of statutory and non-statutory ACDs, and other ACP documentation presented by older Australians in various healthcare settings and across the different Australian states.
Lai M, Jeon YH, McKenzie H. The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review. Int Psychogeriatr. 2019 Feb 14:1-16. doi: 10.1017/S104161021900005X. [Epub ahead of print]
Dementia is a group of progressive neurological illnesses with a long, slow pattern of decline over many years. The diagnosis of dementia can be very unsettling for the person and those close to them. Palliative care for a person living with dementia focuses on quality of life to enhance comfort and functioning of the person. However, it can be difficult to know when a person with dementia is approaching the end of their life. Advance care planning (ACP) is one process of planning for the future yet the uptake of ACP among residents with dementia is as low as 40% in some aged care facilities. This systematic review conducted in Australia identified six key factors for successful engagement: 1) knowledge and understanding of dementia and decision-making for the future, 2) valuing decision-making for the future, 3) healthcare professionals’ communication skills, 4) timing of initiating conversations, 5) relationship quality, and 6) orientation to the future. Healthcare professionals’ knowledge and understanding of dementia and communication skills were critical. Strong communication skills allowed them to sensitively conduct discussions including difficult topics such as mortality and institutionalisation, and to manage conflicts which may arise through the process. The authors also discuss the complexities and challenges that underpin the reluctance to have these discussions and the support that can be provided.
Combes S, Nicholson CJ, Gillett K, Norton C. Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model. Palliat Med. 2019 May 6:269216319845804. doi: 10.1177/0269216319845804. [Epub ahead of print]
Currently under-recognised, frailty is expected to increasingly be part of the profile of people receiving palliative care. Frail older people often experience poor health, falls, fractures, disability and loss of independence. The objective of this review was to understand how advance care planning (ACP) can be better implemented for frail older people and for all relevant multidisciplinary professionals. Forty-two studies were included of which one was conducted in Australia. Although the title specifies older people living in the community, of the included studies ten focussed on the views of older people and their families, the remainder focussed on the needs and experiences of professionals. The findings show that frail older people are most likely to engage with ACP if it is introduced in routine care through multiple opportunities over time and across systems of care. ACP is successful if it is relevant to their current care as well as planning future care. This is the first proposal for a model that illustrates the relationships between the frail older person, the family and the health professionals and the factors that optimise ACP. Those factors include living well now, recognising triggers of decline, discussing death and dying, and the need for professionals to develop their skills and competencies in ACP so that they recognise and proactively use and create ACP facilitation opportunities in the care of frail older people. Key implications for practice include the need for frail older people to engage early with ACP and the importance of reframing ACP as something that in addition to future planning also promotes living well now.
Fetherstonhaugh D, Haesler E, Bauer M. Promoting mealtime function in people with dementia: A systematic review of studies undertaken in residential aged care. Int J Nurs Stud. 2019 Apr 17. pii: S0020-7489(19)30101-4. doi: 10.1016/j.ijnurstu.2019.04.005. [Epub ahead of print]
Mealtimes are often as important as a way of coming together and interacting as they are for us maintaining our health through good nutrition. For people living with dementia, loss of appetite and memory, and problems with the functional ability to eat can cause difficulties with eating and nutrition. For people with dementia, losing weight and/or malnutrition are significant concerns. The objective of this review was to report on the effectiveness of interventions designed to improve mealtime function for residents living with dementia. The 20 studies included in this review were all conducted outside of Australia. The approaches investigated included the influence of food presentation, the physical environment, skills training for people with dementia and two therapies: music and the presence of animals. Findings were limited due to the small scale and lack of rigour in study design or reporting, and strong guidance for specific approaches could not be made. However, it was found that some low-cost and easy-to-implement interventions such as music therapy, creating a homelike dining area, the use of high-contrast crockery and red-coloured cups, the presence of fish tanks in a dining room appear to increase food and fluid intake. Programs designed to improve dexterity, coordination and memory showed mixed results in improving these skills with some improvements in oral intake. While further research is required to establish effectiveness, this review provides insights into low cost and easily implemented approaches that might applied to encourage increased food intake in the residential aged care setting.
Gaviola MA, Inder KJ, Dilworth S, Holliday EG, Higgins I. Impact of individualised music listening intervention on persons with dementia: A systematic review of randomised controlled trials. Australas J Ageing. 2019 Mar 26. doi: 10.1111/ajag.12642. [Epub ahead of print]
Even in the late stage of cognitive impairment, people with dementia (PWDs) are still able to remember and enjoy music. Music and/or its elements (sound, rhythm,melody and harmony) are increasingly being used to meet physical, emotional, mental, social and cognitive needs of PWDs with promising results. This study reviewed randomised control trials (RCTs) to better understand the effects of individualised music listening interventions on PWDs. The reviewers focussed on the impact of intervention on the behavioural and psychological symptoms of dementia (BPSDs) including agitation, anxiety and depression, cognitive function, physiological outcomes and quality of life. The four included studies were conducted in Canada, Italy, Japan and Spain, and severity of cognitive impairment ranged from mild to very severe. Individualised music lists were created with input from the PWD and/or their family members and/or carers. These listening interventions had positive short-term effects on mood and emotion. Short-term improvements were also noted in behavioural and psychological symptoms of dementia (BPSDs) such as verbally agitated behaviour, non-aggressive behaviours, delusion, disinhibition, anxiety, phobias, affective disturbance and depression. As three of the four studies were small (less than 50 participants) and the participants were living with different degrees of dementia, it is difficult to draw firm conclusions from this review. A positive effect on cognitive function and dementia severity was not found. Although greater benefits were noted with other more intensive and/or costly music therapy interventions, the ease of administering individualised music lists is relevant to selecting approaches. Further research is needed to strengthen the evidence base and to determine at which stage of dementia severity the greatest benefit might be gained.
Gonella S, Basso I, De Marinis MG, Campagna S, Di Giulio P. Good end-of-life care in nursing home according to the family carers' perspective: A systematic review of qualitative findings. Palliat Med. 2019 Apr 10:269216319840275. doi: 10.1177/0269216319840275. [Epub ahead of print]
The profile of nursing home (NH) residents is changing with people entering facilities with higher levels of dependency, advanced frailty and dementia. The deaths of patients are now expected within a shorter time frame with an increasing shift toward palliative orientated care. Family members perception of end of life care is recognised as an important quality indicator however it is rarely included in planning care at the end of life. This literature review aimed to identify what families perceived as the elements of good end of life care and to develop a conceptual model of the key aspect's family carers define as good end of life care. One hundred and ten studies were selected for review from 7 countries. Different methodologies were used including ethnographic, interpretive and qualitative methods. Five key themes were identified: perceptions related to perceived life crisis or triggers, and transitions in care, environmental and human factors, good end of life care and dying in dignity, information, understanding and support and establishing relationships and partnerships with health professionals. The review found most elements of good end of life care identified by family carers shared common ground with palliative care. Family carers wanted care aimed at early identification and treatment of physical, psychological and spiritual issues. The model recommended the palliative approach be adopted at an early stage from the time of recognising physical or social changes. The model also recommended there be adequate staff training in palliative care and policies in place to support patient and family focussed care.
Fredrickson BA, Burkett E. Interventions to improve the continuity of medication management upon discharge of patients from hospital to residential aged care facilities. J Pharm Pract Res. 2019 Apr 16;49(2):162-170. doi:10.1002/jppr.1462
Residential aged care facilities (RACF) are now caring for more complex older patients with the majority taking 5 or more medications. An increase in number of medications can increase the risk of adverse drug reactions particularly when first admitted. This systematic review investigates interventions to improve continuity and management of medications when discharging and transitioning patients from hospital to a RACF. Seven studies were included and all interventions involved a multidisciplinary approach to discharge facilitation. To facilitate continuity of care medications need to be supplied in the correct format, an up to date medication chart needs to be in place and comprehensive and accurate discharge medication information needs to be available. The review found there was a high risk of medication related issues on discharge to a RACF and these were multifaceted. The review found a multidisciplinary approach including a pharmacist was vital to improving continuity of medication management. No approach addressed all barriers to continuity of care. However, it was noted better medication management could be enabled with increased access and use of electronic records.
Evans CJ, Ison L, Ellis-Smith C, Nicholson C, Costa A, Oluyase AO, et al. Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review. Milbank Q. 2019 Mar;97(1):113-175. doi: 10.1111/1468-0009.12373.
This comprehensive systematic synthesis examined the available evidence regarding service delivery models that optimise quality of life for people at the end of life. Seventy-two studies were included with all WHO regions represented with studies predominately from the Americas, Europe and the Western Pacific regions. Although globally there was a large number of service delivery models for end of life and palliative care two overarching service delivery models were identified. The ‘Integrative Geriatric Care' and 'Integrated Palliative Care’ models both aimed to maximise people's quality of life at the end of life and advocate comprehensive assessment and person centred. Both approaches highlighted the need to integrate care across the care continuum and to focus service involvement triggered by patient need and the likelihood of benefit. The findings highlighted the need for urgent health system change to improve end of life care as part of universal health coverage and improve the continuum between healthy ageing and healthy dying.
Gautam S, Neville S, Montayre J. What is known about the spirituality in older adults living in residential care facilities? An Integrative review. Int J Older People Nurs. 2019 Mar 1:e12228. doi: 10.1111/opn.12228. [Epub ahead of print]
Spirituality has been identified as an important aspect of ageing, however, there is currently limited research on the spiritual needs of older adults particularly those living in residential care facilities (RCF). This integrative review synthesised the evidence regarding the spiritual needs and care of older adults living in (RCF) from the perspectives of older adults and nurses or caregivers. Seven articles were analysed in this review which used a variety of quantitative, qualitative and mixed methodological approaches. There was limited empirical evidence on the topic, the definitions of spiritual needs varied and a limited number of articles were exclusive to RCF. The review found that spiritual needs in RCF involved psycho-social, religious and existential constructs and was linked to maintaining connections, companionship, religious guidance, counselling and discussion of end of life issues. Older adults highly valued the role nurses and caregivers played in providing spiritual care, whereas nurses and caregivers perceived their role as arranging referrals to religious advisors as the main aspect of spiritual care provision. Spirituality has been directly linked to overall health and wellbeing of older adults and the focus of current research on spiritual needs and care from nurses and caregivers perspectives may limit our understanding of other concepts or spiritual practices, needs and spiritual care provision in RCFs. Including the opinions of both older adults and care givers is important to ensure effective delivery of spiritual care.
Testa L, Seah R, Ludlow K, Braithwaite J, Mitchell R. Models of care that avoid or improve transitions to hospital services for residential aged care facility residents: An integrative review. Geriatr Nurs. 2019 Mar 12. pii: S0197-4572(18)30626-8. doi: 10.1016/j.gerinurse.2019.02.001. [Epub ahead of print]
Older adults living in residential aged care facilities (RACFs) often have complex multi-morbidity and are more frequent users of hospital services. The transition of care between RACFs and hospital are associated with greater challenges and poorer patient outcomes and potentially appropriate health care could be delivered outside a hospital environment. This integrative review aimed to analyse models of care that seek to avoid or improve transitions of older adults in RACFs to hospital settings. Twenty-one studies were included and examined the service components and impacts of hospital utilization, patient outcomes, costs and care staff views. Seven studies were from Australia. The studies used a variety of methods and reported on different models of care, however, 31 service elements with seven common themes were identified. Models of care included those aimed at improving transitions between settings through enhanced primary care, promoting quality improvement, comprehensive hospital care, outreach services, transferring information, or a combination of outreach and comprehensive hospital care. The diversity of the studies and the complexity of the models of care limited the interpretation of individual service elements and outcomes. The review found standardised communication tools alone may improve information transfer between RACFs and hospital services. In addition, providing quality improvement and outreach services to RACFs may prevent some types of hospital admissions.
Hemsley B, Meredith J, Bryant L, Wilson NJ, Higgins I, Georgiou A, et al. An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation, documentation, storage, and implementation. Patient Educ Couns. 2019 Jan 11. pii: S0738-3991(18)30810-3. doi: 10.1016/j.pec.2019.01.007. [Epub ahead of print]
The aim of this systematic literature review of Advance care planning (ACP) and advance care directives (ACD) was to examine published accounts of the views and experiences of patients, family members, and health professionals. Of 93 included articles all published since 2010, 23 reported on studies conducted in the Australian setting. Quality of included studies was not appraised. Detailed description of viewpoints resulted in the authors providing a list of motivators for individuals to engage with ACP and ACD including desire to exercise personal autonomy, improve quality of life, maintain self-sufficiency, minimise family decision-making burden. Importantly the authors also noted the need for additional research in culturally and linguistically diverse (CALD) populations. This suggests that the current review lacked insight into this group which may affect outcomes such as the importance of autonomy and role of the family. Barriers included reluctance to engage with the topic of death and dying, both by members of the public and health professionals. From the health professional’s perspective important issues when implementing ACP or ACD included access to and storage of documents, and difficulty when the preferences of older people differed to those of their family or surrogate decision maker. This detailed review has drawn together numerous studies and provides useful insights to guide ACP and ACD implementation.
Raco M, Burdett T, Heaslip V. Exploring an integrated palliative care model for older people: an integrative review. J Integr Care (Brighton). 2019; doi: 10.1108/JICA-10-2018-0065. [Epub ahead of print]
Global health organisations have recognised the challenges of fragmented care between health and social care sectors in end of life care. With ageing of the population and an increasing number of people living with one or more chronic conditions the need for integrated models of palliative care has become an issue of importance. This review examines the existing literature on integrative models of palliative care for older people. Nine studies were included, and three key themes were identified: person-centred care, coordination of care, and education and training. Integrative care in the palliative care context was identified as an embryonic area of practice with limited literature available. Failure to include the views of individuals themselves was also noted, mainly due to perceived ethical issues around vulnerability of patients and carers receiving palliative care. For older people it may not be the fear of death itself but fears about the quality of care they may receive at the end of life. There is now a shift toward ‘at homeness’ in end of life care with a home-like atmosphere being enabled regardless of the setting. The review identified that tailored multidisciplinary teams are at the heart of well integrated models of palliative care. The study stressed the need for all staff working in this area to have the education and training required to offer quality care. The limited research available suggested that integrated models facilitate the delivery of person-centred care, enhance communication, and support better interprofessional relationships leading to improved quality of life at the end of life.
Stow D, Spiers G, Matthews FE, Hanratty B. What is the evidence that people with frailty have needs for palliative care at the end of life? A systematic review and narrative synthesis. Palliat Med. 2019:269216319828650.
The number of people living and dying with frailty is rising with population ageing. Despite the high prevalence of frailty in older people, there are few end of life care services for this group even though frailty may be a signal point for a need to adopt palliative approaches. To date there is limited evidence available for palliative needs among those with frailty. This review sought to identify and define this evidence gap by examining the palliative care needs of people dying with frailty. Twenty studies were included in the review with the sample sizes varying from 40 to 57,753 participants. The majority of the studies reported hospital data only, four included single settings (hospitals, hospice facilities, or long term care), and three combined date from multiple settings, including community. Thirteen different definitions of frailty were used in the articles. A range of palliative care needs and outcomes were identified across all studies encompassing physical health, psychosocial needs, functional status, care related outcomes and care preferences. The review found people with frailty do have physical, psychosocial and support needs which are not being routinely assessed and palliative care pathways need to be developed for people with frailty.
Pearse W, Oprescu F, Endacott J, Goodman S, Hyde M, O'Neill M. Advance care planning in the context of clinical deterioration: a systematic review of the literature. Palliat Care. 2019 Jan 19;12:1178224218823509. doi: 10.1177/1178224218823509. eCollection 2019
Rapid Response Teams (RRTs) provide rapid in-hospital response to critical patients to prevent further deterioration or escalation of care needs to intensive care units (ICU). The aim of this systematic review was to examine advanced care planning in this context because one-third of patients requiring RRT review are known to be approaching the end of life (including frail, elderly patients, and those with co-morbidity). A total of 31 articles were reviewed, with 16 of the studies conducted in Australia. RRT outcomes predominately focussed on End-of-Life decision-making and establishment of ceilings of care but without reference to advance care planning or patient preferences. Only one of the 31 studies reported reference to advance care planning documents, and in this case only five percent of patients had an advanced care directive in place. Involvement of family or substitute decision maker as part of RRT was minimal, as were post review palliative care consultation and referral for spiritual care where reported. In contrast escalation of care to ICU while variable was as high as 62 percent in one study. With a large proportion of studies conducted in Australia the results of this systematic review are particularly relevant, and suggest a need for patients, their families and care team to better engage with advance care planning if RRT responses are to reflect their priorities and preferences.
Pu L, Moyle W, Jones C, Todorovic M. Psychosocial interventions for pain management in older adults with dementia: A systematic review of randomized controlled trials. J Adv Nurs. 2018 Dec 10. doi: 10.1111/jan.13929. [Epub ahead of print]
This systematic review of randomised control trials (RCT’s) aimed to examine the effectiveness of psychosocial interventions as supportive interventions to manage pain in older adults living with dementia in any setting. Pain is one of the most common issues for people living with dementia however communication and cognitive difficulties can make assessment and management challenging. Pain management using analgesic medications can have serious side effects for dementia patients including confusion, falls and constipation. In this review eight RCT’s were included with a range of parallel, cross over cluster and multi-aim study designs. Half the studies were conducted in USA and one each from Australia, France, Netherlands and Spain. The studies included patients with mild, moderate, or advanced dementia and different pain histories. Psychosocial interventions used in the studies included sensory stimulation, massage, music, showering and physical activity for individuals or groups. The results show that sensory intervention for individuals may reduce observed pain, but the results should be viewed with caution as the quality of evidence in many of the studies was very low.
Lemoyne SE, Herbots HH, De Blick D, Remmen R, Monsieurs KG, Van Bogaert P. Appropriateness of transferring nursing home residents to emergency departments: a systematic review. BMC Geriatr. 2019 Jan 21;19(1):17. doi: 10.1186/s12877-019-1028-z.
This systematic review examined the characteristics of Emergency Department (ED) transfers of Nursing Home (NH) residents. The review sought to describe definitions of appropriateness and to identify factors associated with inappropriate transfer. Seventy-seven studies were selected including 18 Australian studies, and observational study designs dominated (44 of 77 studies). Transfers to ED are often associated with a high risk of complications and mortality. It was found that NH residents were often transferred to ED after an exacerbation of an illness or an injury requiring acute medical services. The most common reasons for transfer were falls related trauma, altered mental state and infection. Transfers to ED were found to be associated with a high risk of complications and mortality and 4 to 55% of transfers were deemed inappropriate. It should be noted that definitions of inappropriate transfer to ED’s varied across studies which took place in countries with varied health and care systems. However, the main conclusions were supported by most of the studies and inappropriate transfers of NH residents to ED’s was widespread. The review highlighted the need to respect each individual’s autonomy, encourage advanced care planning, provide sufficient trained nursing staff, increase the role of GP’s in illness management and promote inter-professional collaboration between GP’s, NH staff and Ed’s.
Hukins D, Macleod U, Boland JW. Identifying potentially inappropriate prescribing in older people with dementia: a systematic review. Eur J Clin Pharmacol. 2019 Jan 4. doi: 10.1007/s00228-018-02612-x. [Epub ahead of print]
People with dementia have high levels of comorbidities and may receive sub-optimal care including poor pain control and potential inappropriate prescribing (PIP). This has been associated with adverse drug reactions, hospitalisation, mortality and lower quality of life in older people with dementia. This review aimed to describe the tools used to identify PIP, the prevalence of PIP, medications identified as inappropriate, and to describe any advantages and disadvantages of the tools identified. Twenty-six studies were included in the review, most were observational and used at least one tool to measure PIP prevalence. One study was a non-randomised control evaluation of an intervention aimed at improving medication management. A total of 26,534 participants were included. The application of PIP tools varied considerably across the studies however the review did demonstrate that rates of inappropriate prescribing and polypharmacy were high in older people living with dementia. Rates of sedative and anticholinergic medication use were high despite the evidence of risks to people with dementia. To be effective tools need to be regularly updated and more comprehensive to include all potentially inappropriate medications.
Gonella S, Basso I, Dimonte V, Martin B, Berchialla P, Campagna S, et al. Association Between End-of-Life Conversations in Nursing Homes and End-of-Life Care Outcomes: A Systematic Review and Meta-analysis. J Am Med Dir Assoc. 2018 Nov 20. pii: S1525-8610(18)30554-1. doi: 10.1016/j.jamda.2018.10.001. [Epub ahead of print]
This systematic review examines the impact of end of life (EOL) conversations with residents and families in Nursing Homes (NH) on end of life outcomes and decisions on the use of life sustaining interventions. Sixteen studies were included with ten from USA, four from Europe and one each from Canada and Asia. Only six of the 16 studies reported on advanced care directives and most conversations were between health professionals and family members even when the resident had the capacity to be involved. The findings suggest that health professional end of life conversations with the resident and family may promote the uptake of a palliative approach with less aggressive treatments. Specifically, meta-analysis showed a two-fold increased likelihood of limiting or withdrawing life-sustaining treatments following EOL conversations. Outcomes were not influenced by social, geographical or cultural context but were influenced by family member education level. EOL conversations were also shown to have a positive effect on a family’s satisfaction with EOL care and this was found to increase with the duration and frequency of discussions overtime. The review is limited by poor reporting of EOL conversation characteristics. However, the findings suggest that EOL conversations should be initiated from an early stage and take account of resident’s preferences.
Bone AE, Evans CJ, Etkind SN, Sleeman KE, Gomes B, Aldridge M, et al. Factors associated with older people's emergency department attendance towards the end of life: a systematic review. Eur J Public Health. 2018 Nov 26. doi: 10.1093/eurpub/cky241. [Epub ahead of print]
This study examined factors associated with Emergency Department (ED) attendance by people over 65 years of age in the last year of life. ED presentations and resulting hospitalisations are a major cost pressure in end of life healthcare. Twenty-one, predominately US studies were included with a combined sample size of over 1.5 million participants. Only six studies reported on ED attendance in relation to advanced care planning, four in relation to palliative care-related interventions, and two in relation to hospice care. The systematic review identified service-related, socio-demographic factors and illness related factors associated with ED attendance. Based on six studies including three of high quality, people receiving palliative or hospice care had a lower attendance at ED in their last year of life. This supports accumulating evidence that modifiable service-related factors such as palliative care might influence ED presentation among older people in the last year of life.
Chung A, Collier A, Gott M. Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review. Palliat Med. 2018 Dec 5:269216318813813. doi: 10.1177/0269216318813813. [Epub ahead of print]
Family carers play a crucial role in end of life and palliative care but often report unmet support needs and are at an increased risk of poor mental and physical health outcomes. There is growing interest in Public Health approaches that focus on building community capacity and support networks that can support family carers but the extent or nature of these types of initiatives is unknown. This review sought to identify current community focussed or community led initiatives that support people and their families with palliative care needs. The integrative review identified six community focussed evaluated initiatives. All six studies were led by a professional and three studies had community input either directly or in an advisory capacity. The main aim of most of the initiatives was to promote psychosocial wellbeing among carers and a variety of delivery methods including DVD’s, a website and network or community facilitation were used. All initiatives were shown to be of benefit to carers. The review highlighted the limited availability of evaluated initiatives and the authors called for further discourse and research involving communities in the process.
Liu JT, Kovar-Gough I, Farabi N, Animikwam F, Weers SB, Phillips J. The Role of Primary Care Physicians in Providing End-of-Life Care. Am J Hosp Palliat Care. 2018 Oct 24:1049909118808232. doi: 10.1177/1049909118808232. [Epub ahead of print]
The current body of literature focused on ‘primary palliative care’ remains limited. Primary care physicians (PCPs) frequently have long-term relationships with patients as well as their families and the involvement of PCPs at the end of life has been linked to a number of positive outcomes. These include greater continuity of care, fewer hospital admissions and greater PCP involvement at the end of life. This study used a narrative review of the literature to develop a theoretical model based on the role's PCPs play in caring for people at the end of life. Most of the studies were from Europe and Canada. The review outlined four major roles that PCPs played in the care of adult patients at the end of life: pain and symptom management; information management, including transmitting and clarifying information, setting care priorities, and assisting patients with treatment decisions; coordinating care and collaborating with other providers; and addressing patients’ and families’ social, emotional, and spiritual needs. The four roles identified can have practical applications for assessing PCPs own practice, promoting a full scope of practice, and for education and health service planning.
Dixon J, Karagiannidou M, Knapp M. The Effectiveness of Advance Care Planning in Improving End-of-Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion. J Pain Symptom Manage. 2018 Jan;55(1):132-150.e1. doi: 10.1016/j.jpainsymman.2017.04.009. Epub 2017 Aug 5.
The purpose of this review was to identify and assess the evidence concerning the effectiveness and cost-effectiveness of Advance Care Planning (ACP) for people with dementia. ACP is particularly important for dementia patients and their carers as it can be a way of supporting peoples autonomy when they can no longer speak for themselves. ACP in dementia has special challenges as it may be difficult to identify a terminal phase or a lack of professional or family confidence in discussing end of life may result in hospital admissions toward the end of life. A palliative approach in the care of people with dementia is recommended but not always implemented. Eighteen studies were identified and most found ACP to be associated with some improvement in end of life outcomes. Most of the studies were from the USA and based in care-homes. The type of ACP and outcome measures used varied. Over half the studies were moderate to high quality, three were randomised control trials and two were of low quality. The review found that ACP is likely to be relevant for people with dementia and may be linked to a range of positive end-of-life outcomes. Recommendations were made for further research with priorities identified including measurement of patient/carer outcomes, outcomes in other settings beyond care-homes, and improved evaluation of ACP.
Zeng YS, Wang C, Ward KE, Hume AL. Complementary and Alternative Medicine in Hospice and Palliative Care: A Systematic Review. Send to J Pain Symptom Manage. 2018 Nov;56(5):781-794.e4. doi: 10.1016/j.jpainsymman.2018.07.016. Epub 2018 Aug 2.
This review sought to identify and evaluate CAM therapies in palliative and hospice settings looking at symptom management and quality of life improvement. Patients, families or care givers may select CAM approaches when conventional therapy is not adequate for their symptoms or needs especially toward the end of life. Seventeen studies were identified for this review and the therapies included acupressure, acupuncture, aromatherapy massage, breathing, hypnotherapy, massage, meditation, music therapy, reflexology and reiki. The review highlighted short term benefits associated with CAM use in the management of symptoms, but between group differences were not significant. The authors called for further studies to look at the potential value of CAM in palliative care settings.
Thompson W, Lundby C, Graabaek T, Nielsen DS, Ryg J, Søndergaard J, et al. Tools for deprescribing in frail older persons and those with limited life expectancy: a systematic review. J Am Geriatr Soc. 2018 Oct 13. doi: 10.1111/jgs.15616. [Epub ahead of print]
The aim of this review was to summarise available tools for deprescribing where frailty and/or limited life expectancy are specifically considered. A total of 15 tools were identified, but most were based on expert opinion and only four had been tested in clinical practice. Studies of use in clinical practice were of very low-quality. Classification of the 15 tools according to where they would be used in the deprescribing process was presented by the authors as a logical approach to reflect clinician need and to assist choice of the most appropriate tool. The categories were: models or frameworks (a high level first step approach to deprescribing as a general concept); entire medications list (approaches to identify and prioritise drugs for deprescribing); and approaches to specific medications (tools containing more specific information on deprescribing of individual drugs). Overall the review highlights the availability of tools to support deprescribing, but also highlights the lack of evaluation in clinical practice which in turn limits tool use in decision making.
Baillon SF1, Narayana U, Luxenberg JS, Clifton AV. Valproate preparations for agitation in dementia. Cochrane Database Syst Rev. 2018 Oct 5;10:CD003945. doi: 10.1002/14651858.CD003945.pub4. [Epub ahead of print]
The authors of this review note that as many as 90% of people with dementia experience agitation and use of medications such as valproate to address this continues even though its use is not generally recommended in available guidelines. The aim of this Cochrane review was to determine the efficacy and adverse effects of valproate preparations used to treat agitation in people with dementia. Based on five studies including 430 participants receiving doses of valproate between 480mg/day and 1000mg/day, this review found no evidence for the efficacy of valproate in treating agitation in people with dementia. However, valproate use was associated with significantly higher rates of adverse effects (including serious adverse events), although these findings were based on moderate to very low-quality evidence. Adverse events associated with use of valproate included sedation, nausea, vomiting, diarrhoea, and urinary tract infections. Based on currently available evidence the authors could not recommend use of valproate for management of agitation in dementia; the potential for adverse effects outweighed any potential benefit.
Fitzpatrick JM, Tzouvara V. Facilitators and inhibitors of transition for older people who have relocated to a long-term care facility: A systematic review. Health Soc Care Community. 2018 Sep 21. doi: 10.1111/hsc.12647. [Epub ahead of print]
Relocation to a long-term care facility often accompanies functional and cognitive impairment, and/or need for assistance with activities of daily living. However, for the person and their family this can be a stressful time that is often poorly understood by care facility providers. To address this gap in understanding, a total of 34 studies mostly moderate to high-quality qualitative studies from twelve countries (including one from Australia) were examined. Facilitators and barriers to transition were mapped to four themes: resilience of the older person (capacity to make sense of and come to terms with relocation); interpersonal relationships and connections; this is my home (home-like but not replacing one’s home); and care facility as an organisation (organisational culture, approaches to care and workforce factors). For each of these themes approaches to maximise facilitators and minimise barriers are discussed. For example, it is proposed that the older person’s resilience might be positively influenced through support for self-efficacy, and continuation of one’s faith, values and beliefs, and ethnic identity. Although the research conducted in this area has been very heterogeneous and hence the generalisability of findings limited, the review has highlighted potential transition facilitators and inhibitors. Knowledge of these may be of use in supporting the transition of older people to long-term care facilities.
Cresp SJ, Lee SF, Moss C. Substitute decision makers’ experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis. Dementia (London). 2018 Sep 25:1471301218802127. doi: 10.1177/1471301218802127. [Epub ahead of print]
Substitute decision makers have a major role in deciding on care options for people with dementia at end-of-life. Yet, according to the authors of this review much of the research into advance care planning has ignored the needs and support of substitute decision makers. The aim of this review was to examine how substitute decision makers are affected by and experience making decision for older persons with dementia. Based on seven articles published in the last ten years, the review provides insights gained from small to medium sized studies conducted in Australia, Spain, the US, and UK. Synthesis yielded five findings: trust; guilt, mistrust and confusion; translating quality of life; negotiating families; and uncertainty and reactivity. Of central importance across the themes was the role of health professionals, including development of trust with substitute decision makers and communicating with them to improve clinical understanding and capacity for proactivity. Based on this review six practice recommendations are made to address the needs of substitute decision makers caring for people with dementia. However, the authors caution that these are weak recommendations because of uncertainty around reported outcomes. The authors suggest a list of needed research to address this.
Van Leeuwen E, Petrovic M, van Driel ML, De Sutter AI, Stichele RV, Declercq T, et al. Discontinuation of Long-Term Antipsychotic Drug Use for Behavioral and Psychological Symptoms in Older Adults Aged 65 Years and Older With Dementia. J Am Med Dir Assoc. 2018 Aug 9. pii: S1525-8610(18)30361-X. doi: 10.1016/j.jamda.2018.06.023. [Epub ahead of print]
Based on 10 randomised controlled trials, this update of a Cochrane systematic review examined the impact and feasibility of discontinuation of long term antipsychotic drugs for behavioural and psychological symptoms (BPSD) in older people with dementia. All included studies were published before 2013, and were generally of low to very low quality, with limited statistical power. However, pooled meta-analysis on two comparable studies found no significant difference in neuropsychiatric inventory score for discontinuation versus continuation after three months. Results from seven studies supported this finding, although between study differences precluded inclusion for meta-analysis. Similarly, the available evidence did not show any difference in adverse events for discontinuation versus continuation. Subgroup analyses suggested that discontinuation might reduce agitation in less severe BPSD but worsen BPSD in those with more severe BPSD at baseline. While this review was limited by the low quality of available studies, the authors suggest that discontinuation of long-term use antipsychotics for BPSD in older people with dementia should be considered.
Barker RO, Craig D, Spiers G, Kunonga P, Hanratty B. Who Should Deliver Primary Care in Long-term Care Facilities to Optimize Resident Outcomes? A Systematic Review. J Am Med Dir Assoc. 2018 Aug 31. pii: S1525-8610(18)30388-8. doi: 10.1016/j.jamda.2018.07.006. [Epub ahead of print]
This review investigated the impact of different health professional group input on the health-related outcomes of older adults in long-term care facilities. Based on 24 studies published since 2000, including six conducted in Australia, the most common comparison was that of specialist doctor or specialist nurse versus usual primary care (mostly primary care generalist). Specialist practitioner was defined as a professional with a specific remit for older patients and/or specialist training such as geriatrics. Four studies were randomised controlled trials (RCTs), and unplanned transfer to hospital was the most commonly reported outcome followed by prescribing and mortality. Specialists doctor input was found to be strongly associated with improved prescribing but uncertain for reduced transfers, while specialist nurse input was associated with decreased unplanned hospital transfers but uncertain for improved prescribing. Neither professional group was associated with any impact on mortality. This review of international studies did not examine the potential impact of health system differences on the reported outcomes, and this limits generalisation of results. However, strong support for the potential impact of specialist doctor and specialist nurse input on improved prescribing and reduced unplanned transfers to hospital from long-term care facilities was shown.
Góngora Alonso S, Hamrioui S, de la Torre Díez I, Motta Cruz E, López-Coronado M, Franco M. Social Robots for People with Aging and Dementia: A Systematic Review of Literature. Telemed J E Health. 2018 Aug 23. doi: 10.1089/tmj.2018.0051. [Epub ahead of print]
This review sought to examine available evidence for the use of social robots among people with dementia and/or aging. Although 38 articles were included, approximately half of these were conference articles rather than peer reviewed journal articles. Nevertheless, this is an area of increasing interest, and a broad spectrum of social robots was identified. Most articles were published or presented in the last five years. Acceptance by older people was found to differ in line with their differing social needs and capacity; people with dementia were more accepting of the technology. Promoted as an approach to addressing loneliness, isolation, depression and dependence, newer robots are now incorporating videoconferencing capability to connect people with dementia and their family members. However, simpler, social robots such as the widely-known PARO robot were found to be better accepted. Although this is an emerging field, and the availability of robust evidence still very limited, this review highlights the need to consider social environment and capacity when developing robots to assist in the care of older people with or without dementia. This review provides a preliminary insight into the available and emerging evidence behind this finding, and the need for more robust evaluation.
Vrkljan B, Montpetit A, Naglie G, Rapoport M, Mazer B. Interventions that support major life transitions in older adulthood: a systematic review. Int Psychogeriatr. 2018 Jul 11:1-23. doi: 10.1017/S1041610218000972. [Epub ahead of print]
This systematic review examined the effectiveness of interventions on major life transitions that can negatively impact on the emotional well being of older people. Eleven studies were included that examined eight unique interventions focused on the three most common transitions in older adulthood, bereavement, retirement, and relocation of residence to a higher level of care (assisted or residential care). The studies included RCT’s, individual and group based interventions. Although findings suggested group based interventions delivered by trained personnel can be effective in mitigating the negative health related consequences associated with major life transitions in later life, the methodical quality of the studies was weak.
McDermott E, Selman LE. Cultural factors influencing Advance Care Planning in progressive, incurable disease: A systematic review with narrative synthesis. J Pain Symptom Manage. 2018 Jul 16. pii: S0885-3924(18)30345-2. doi: 10.1016/j.jpainsymman.2018.07.006. [Epub ahead of print]
This study examined how cultural factors influence Advance Care Planning (ACP) for patients with serious illness. It also examined how cultural background influences acceptability of ACP and what cultural factors practitioners need to be aware of aware of in approaching communication and planning with patients and families about end of life (EOL) issues. This systematic literature review included 27, mostly US-based studies of which 20 were quantitative, 4 qualitative and 3 mixed methods approaches. A key strength of the study was the expanded focus to include Ethnicity, and religion/spirituality, and nationality or country of residence. The study found that there are a number of interconnected cultural factors influencing ACP, with less formal, communication-focussed approaches valued and warranting further research. The authors call for more research to adapt ACP to meet the needs of culturally diverse groups.
Fitzgerald R, Gallagher J. Oral health in end-of-life patients: A rapid review. Spec Care Dentist. 2018 Jul 19. doi: 10.1111/scd.12316. [Epub ahead of print]
This was the first rapid review of the oral health of end-of-life( EOL) patients from a dental perspective. Despite the well-established link between oral health and quality of life there has been little consideration given to the oral health of patients approaching EOL. The aim of this review was to synthesize existing evidence to assist clinicians and decision makers and facilitate further research. A total of 19 studies were included, of these 15 were observational studies: five
were retrospective cohort studies and 10 cross sectional studies. Studies were drawn from nine countries and although most were of poor quality, they highlight the need to establish a stronger evidence base. The review showed that oral health and oral health-related quality of life was poor, with high rates of dental disease in end-of-life and palliative care populations. Barriers to providing oral care included patient comorbidity and physical difficulties. The review identified the need for more professional support and care for this population.
Moon F, McDermott F, Kissane D. Systematic Review for the Quality of End-of-Life Care for Patients With Dementia in the Hospital Setting. Am J Hosp Palliat Care. 2018 Jan 1:1049909118776985. doi: 10.1177/1049909118776985. [Epub ahead of print]
This systematic review looks at how the current literature describes the quality of end of life care for patients with dementia in the hospital setting. The review assessed 26 articles concerning medical, nursing, and psychosocial care, and sought to identify clinical issues, care provisions, and indicators for future end of life care guidelines. The findings showed patients with dementia are less likely to receive aggressive care at the end of life compared to those without dementia, but there may be inadequate palliative care interventions and symptom management for those with dementia. This was considered to be linked to the debate regarding dementia not being conceptualised as a terminal condition. Some limitations to the study were identified around how palliative and end-of-life care was defined and the studies included represented mainly Western attitudes toward care which may not be appropriate to other cultural contexts. The study did provide a platform to develop specific end-of-life care guidelines and 7 principles to manage end-of-life care patients with dementia were suggested for consideration: The review highlighted the need for further research in the areas of greater education of health professionals and engagement of family caregivers in optimizing end-of-life care for patients with dementia.
Baird LG, Fraser K. Home Care Case Managers' Integrated Care of Older Adults With Multiple Chronic Conditions: A Scoping Review. Prof Case Manag. 2018 Jul/Aug;23(4):165-189. doi: 10.1097/NCM.0000000000000286.
This scoping review examined the extent, range, and nature of available research on home care case manager’s (HCCMs) provision of integrated care for older adults with multiple chronic conditions (MCCs) in community home care settings. Searches for relevant literature across seven databases identified 14 relevant articles, including five quantitative studies. The review showed HCCMs most frequently use case management standards of practice of assessment, planning, implementation, and evaluation to provide professional integrated care and clinical integrated care functions and these were found to be both facilitators and barriers to integrated care. The study proposed the development of evidence based HCCM practice guidelines, and the development of a new case management and integrated care conceptual framework. Understanding how HCCM provide integrated care could have the potential to reduce fragmented care, and enhance the delivery of person-focused quality care to older adults with MCCs.
Paulis SJC, Everink IHJ, Halfens RJG, Lohrmann C, Schols JMGA. Prevalence and Risk Factors of Dehydration Among Nursing Home Residents: A Systematic Review. J Am Med Dir Assoc. 2018 Aug;19(8):646-57.
This systematic review looked at the prevalence and risk factors of dehydration among nursing home residents. Dehydration is a condition that results from excessive loss of body water with or without sodium and is a relevant and frequently occurring problem for nursing home residents. Nineteen mostly moderate to high quality studies were included and the prevalence rates of dehydration varied between 0.8% and 38.5% and were measured using different methods. A total of 49 potential risk factors for dehydration were identified. The study revealed a wide variety of methods for measuring dehydration, and was limited by uncertainty as to which type of dehydration (chronic or acute) was being measured. There was also a lack of universally agreed operationalisation. The different methods of identification made it difficult to compare prevalence rates. Only two of 49 potential risk factors (fever and cognitive impairment) were more than once significantly associated with dehydration. The study concluded that more research into dehydration among nursing home residents is needed to develop more uniform, reliable detection methods and more clarity of potential risk factors to support early tailored prevention strategies for this target group.
Greenwood N, Menzies-Gow E, Nilsson D, Aubrey D, Emery CL, Richardson A. Experiences of older people dying in nursing homes: a narrative systematic review of qualitative studies. BMJ open. 2018;8(6):e021285.
Recognition of the importance of providing good end-of-life care for older people in residential care is growing. This study sought to identify and synthesise qualitative research investigating older people’s experiences of dying in residential care. Based on nine studies, including six from the US, the findings highlighted a number of issues faced by older people dying in residential care, including: physical discomfort related to potentially avoidable symptoms, inappropriate food and drink, limited assessment, and monitoring. Loneliness and depression were also common findings in many of the studies, and highlighted the critical value of professional sensitivity to the broader psychosocial aspects of the older persons dying experience. The review also noted there was a need to include the subjective experiences and perspectives of patients themselves and those most closely involved with older people’s dying experience to inform future service improvement.
Du Preez J, Millsteed J, Marquis R, Richmond J. The Role of Adult Day Services in Supporting the Occupational Participation of People with Dementia and Their Carers: An Integrative Review. Healthcare (Basel). 2018 May 8;6(2). pii: E43. doi: 10.3390/healthcare6020043.
This review looked at the role attendance at community-based adult day therapy services play in supporting the occupational participation of people with dementia and the impact on primary carers. A total of 16 studies were included in the integrated review. Day therapy services provide a broad range of personalised services aimed at enhancing the occupational participation, quality of life and well-being of attendees by providing support to remain in their own homes and by providing respite to carers. Attendance at day therapy service was found to positively impact on physical and psychological functioning by reducing feelings of social isolation, anxiety, and depression. According to the authors, while the evidence supports the benefits of adult day services they remain underutilised. Cost of care and privacy concerns contribute to this outcome. The promotion of the aging-in-place approach may mean there is an increased reliance and expectation on informal carers to undertake the caring role where service providers actively involved carers early institutionalisation of people with dementia was found to be delayed and was also associated with improved caregiver outcomes. People with dementia and family carers require access to flexible, informative and collaborative services.
Mogan C, Lloyd-Williams M, Harrison Dening K, Dowrick C. The facilitators and challenges of dying at home with dementia: A narrative synthesis. Palliat Med. 2018 Jun;32(6):1042-1054. doi: 10.1177/0269216318760442.
Providing end-of-life care to people with dementia poses a significant challenges to healthcare and communities. This study aimed to identify and synthesise the literature relating to the challenges and facilitators of providing end-of-life care at home for people with dementia. Seven papers, four quantitative and three qualitative, were included in the study. Sample sizes ranged from 4 to 210, with 597 participants in total across the studies. The study identified six key themes four facilitators and two challenges. Facilitators identified included; caregiver resilience; social networks; medications and symptom management and health care professionals support. Challenges identified included; issues with professional services and deteriorating physical or mental health. The research showed people with dementia may not always require specialist palliative care at the end of life and that research into community development and public health approaches like compassionate communities are needed so families can be supported to allow a greater number of people with dementia to die at home.
Anker‐Hansen C, Skovdahl K, McCormack B, Tønnessen S. The third person in the room: The needs of care partners of older people in home care services - A systematic review from a person‐centred perspective. J Clin Nurs. 2018 Apr;27(7-8):e1309-e1326. Epub 2018 Mar 26.
This study looked at the needs of care partners of older people receiving home care services. There has been an increasing shift toward people wanting to ‘age in place’ and be cared for in the community. Carers have been called the ‘invisible aid corps’ as they perform many care tasks. With the focus now on person-centred care it is important to acknowledge carers as care partners working with care services to provide quality care. The term ‘care partner’ implies a more balanced relationship between all parties in the care situation. Sixteen studies were included, eleven qualitative and five quantitative, which aimed at developing knowledge about care partners' needs, possible approaches and gaps in current knowledge in the area. The results indicate that care partners have unmet needs and want trustworthy services able to adapt to their needs, more information and training as well as relief and support. The review proposed that a model for systematic collaboration between care partners and home care services be developed based on the principles of patient-centred care. Although this study had some limitations, it is one of the first systematic reviews to identify a gap in the current knowledge about what care partners of older people with mental health problems living at home need from home care services.
Legere LE, McNeill S, Schindel Martin L, Acorn M, An D. Nonpharmacological approaches for behavioural and psychological symptoms of dementia in older adults: A systematic review of reviews. J Clin Nurs. 2018 Apr;27(7-8):e1360-e1376. doi: 10.1111/jocn.14007.
Dementia prevalence is expected to increase and strategies are required to give effective care and support to people living with dementia and their carers in all health and care settings. An important focus for people with dementia is appropriate care for behavioural and psychological symptoms of dementia (BPSD). BPSD can affect 80% of people with dementia and is often used to describe symptoms such as changes in mood, delusions, apathy, agitation, wandering, calling out, repetitive questioning and sexual disinhibition. BPSD can be challenging for family, caregivers and healthcare providers to manage and has been found to potentially increase the likelihood that persons with dementia are admitted to a residential care facility. The aim of this systematic review was to synthesise existing evidence on non-pharmacological approaches for managing BPSD in older persons with dementia. There were 18 international reviews included covering both individual therapies as well as targeted and organisational interventions. The most conclusive evidence supported individual, sensory-focused interventions such as music therapy, interventions targeting pain, person-centred approaches and education for family caregivers. The study found a need for further research for interventions best suited for specific behaviours and contexts, particularly inappropriate sexual behaviours.
Quispel-Aggenbach DWP, Holtman GA, Zwartjes H, Zuidema SU, Luijendijk HJ. Attention, arousal and other rapid bedside screening instruments for delirium in older patients: a systematic review of test accuracy studies. Age Ageing. 2018 Apr 25. doi: 10.1093/ageing/afy058. [Epub ahead of print]
Delirium is a serious neuropsychiatric disorder that occurs frequently in patients in hospitals and nursing homes. As one third of cases go undetected, the aim of this study was to review the sensitivity and specificity of rapid screening instruments to increase detection but be easy and rapid to use. Twenty seven studies of screening instruments were identified that tested accuracy and were easy to administer (<3 minutes). Two arousal tests the Observational Scale of Level of Arousal (OSLA) and Richmond Agitation and Sedation Scale (RASS) were best able to identify delirium cases in older patients. The advantage of rapid and frequent screening was that only screen positive cases need more extensive diagnostic follow up.
Ferrah N, Ibrahim JE, Kipsaina C, Bugeja L. Death Following Recent Admission Into Nursing Home From Community Living: A Systematic Review Into the Transition Process. J Aging Health. 2018 Apr;30(4):584-604. doi: 10.1177/0898264316686575. Epub 2017 Feb 5.
This study investigates the impact of transition to a nursing home from the community at one, three and six months post first hospital admission. Specifically, it examines the impact of transition on the mortality of elderly individuals following admission and the causes and risk factors for death. Eleven cohort studies were analysed. Mortality was measured at different time intervals in the first 6 months post admission and varied from 0% to 34% with a median of 20%. The decision to admit a person to a nursing home was commonly motivated by the belief that they are no longer safe at home, however newly admitted older people are at 2-12 times greater risk of dying than those remaining in the community. The review confirmed that newly admitted residents experienced higher mortality rates even after controlling for physical health and sociodemographic characteristics. This raises the possibility of modifiable risk factors including transition process and facility characteristics, as independent contributors to mortality. This review highlights these findings and current gaps in knowledge that need to be addressed.
Abrahams R, Liu KPY, Bissett M, Fahey P, Cheung KSL, Bye R, et al. Effectiveness of interventions for co-residing family caregivers of people with dementia: Systematic review and meta-analysis. Aust Occup Ther J. 2018 Mar 12. doi: 10.1111/1440-1630.12464. [Epub ahead of print].
People living with dementia experience increasing difficulties in daily tasks as the disease progresses, and co-residing family members are often required to take up the caregiving role. Care giving has significant impacts on family members and burden, depression, decreased health and social support can increase the likelihood that care recipients will be moved to assisted living accommodation. The effects of multicomponent interventions specifically targeting these four important outcomes has not been established. This review examined twenty-two studies and demonstrated a significant impact of interventions on all four outcomes. Multi-component interventions consisting of a combination of counselling, support groups, education, stress and mood management or telephone support were identified as effective interventions. Changes in these caregiver-related outcomes may delay the need for care recipients to move to assisted accommodation. The results of this review are useful to health practitioners and researchers in supporting caregivers to care for people with dementia.
Etkind SN, Bone AE, Lovell N, Higginson IJ, Murtagh FEM. Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis. J Am Geriatr Soc. 2018 Mar 7. doi: 10.1111/jgs.15272. [Epub ahead of print].
This study aimed to identify influences on care preferences of older people with advanced illness and to integrate the results into a model to guide practice and research.
57 relevant articles reported on older adults with advanced illness: people with specific illnesses and markers of advanced disease; populations identified as in the last year of life; or individuals receiving palliative care. Preferences can be broadly classified as: preferences for the context in which care is delivered; preferences for care relationships; preferences for involvement in care; and preferences for care outcomes, such as comfort versus extending life or place of death. The review showed that family and care context, particularly support from family were dominant influences on care preferences. Concerns about the carer or family and the wish not to be a burden influenced options for end-of-life care. These factors combined with individual and illness-related factors were found to influence preferences through mechanisms of trade-offs, expectations, engagement, and the ability to form and express preferences. Practitioners should take these factors into account when considering care preferences. The stability of care preferences was unclear and warrants further research.
Fang B, Yan E. Abuse of Older Persons With Dementia: A Review of the Literature. Trauma Violence Abuse. 2018 Apr;19(2):127-147. doi: 10.1177/1524838016650185. Epub 2016 May 31.
Based on 49 published studies, this detailed systematic review found varying rates of abuse in older persons with dementia ranging from 0.3% to 78.4% in the community and 8.3% to 78.3% in institutional settings. These rates are much higher than the rates of 3.2–27.5% recorded in general older populations. Caring for people with dementia has been shown to increase the risk of caregiver burnout which can potentially lead to abuse of care recipients. Abuse of people with dementia often goes unnoticed and previous studies indicate that bystanders observe behaviour as ‘‘less abusive’’ when the victims have dementia. Substantial variation in reported rates of abuse were also noted according to type of abuse. Rates for physical abuse ranged from 1.5% to 78.4%, psychological abuse from 3.5% to 75%, caregiver neglect from 0.3% to 78.3%, financial abuse from 0.3% to 2.5%, and self-neglect 12.6%. This variation was in part due to study methodological variation. Most of the included studies were conducted in Western countries, however, higher rates of abuse were reported in Asian settings. Studies on abuse of residents with dementia in institutional settings were underrepresented in the literature. The presence of cognitive impairment compounded by minimal oversight, insufficient regulations, and low staff ratios can potentially conspire to enhance the risk of abuse. Based on the finding that the most relevant risk factors for abuse were related to dementia symptoms the authors call for the development of disease-sensitive screening tools to capture the specific characteristics of abuse involving older persons with different stages of dementia.
Booth V, Hood V, Kearney F. Interventions incorporating physical and cognitive elements to reduce falls risk in cognitively impaired older adults: a systematic review. JBI Database System Rev Implement Rep. 2016 May;14(5):110-35. doi: 10.11124/JBISRIR-2016-002499.
Older adults with cognitive impairment such as dementia have an increased risk of falling. The aim of the review was to identify the effectiveness of combined cognitive and physical interventions on the risk of falls in cognitively impaired older adults. The review was based on eight randomized controlled trials that evaluated the effectiveness of multicomponent exercise programs, including physical and cognitive activities, music-based group exercise and mind-body tai chi on falls. Overall, multicomponent interventions incorporating both physical and cognitive components demonstrated positive effects on balance, functional mobility and gait speed when compared with a control and had significantly better effect on balance and gait speed within mild cognitive impairment populations.
Moon H, Dilworth-Anderson P, Gräske J. The effects of placement on dementia care recipients’ and family caregivers’ quality of life: a literature review. Qual Ageing Older Adults. 2017;18(1):44-57.
The paper looked at the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. The review of 12 studies in a variety of care settings revealed a discrepancy in the effects of institutionalisation on the QoL of CRs and CGs. CR's QoL varied between significant decline and stable or improved QoL, while outcomes for CG's indicated that they benefited from the placement or maintained their QoL. Despite the variability in the studies, it was noted that CRs in small-scale facilities such as a group home or a specialised care setting, which focus on person centred care environments, showed better outcomes. The study concluded that the influence on QoL can provide guidance for best practice but there is a need for further research to address the needs of older people in residential care settings and their caregivers.
Kojima G, Liljas A, Iliffe S, Walters K. Prevalence of frailty in mild to moderate Alzheimer's disease: A systematic review and meta-analysis. Curr Alzheimer Res. 2017;14(12):1256-1263. doi: 10.2174/1567205014666170417104236.
Although physical frailty and cognitive impairment have been shown to be associated, evidence on the prevalence of frailty in Alzheimer's disease is scarce. This systematic review explored the contribution of cognitive assessment in frailty operationalisation. The review looked at the prevalence of frailty and the combined data to synthesise the pooled prevalence of physical frailty among patients with Alzheimer’s disease. Five studies incorporating 534 patients with Alzheimer's disease were included for the meta-analysis. The study showed that frailty is highly prevalent in older patients with Alzheimer’s disease in the community. The prevalence of frailty varied from 11.1% to 50.0% and the pooled prevalence was 31.9%. However the findings of this review should be interpreted with caution as the true prevalence of frailty among patients with Alzheimer’s disease is expected to be much higher as end-stage patients may not be able to participate in studies or perform measurements of physical frailty components due to severe cognitive and or physical limitations.
El-Saifi N, Moyle W, Jones C, Tuffaha H. Medication Adherence in Older Patients With Dementia: A Systematic Literature Review. J Pharm Pract. 2017 Jan 1:897190017710524.
Medication non-adherence is of potential significance for palliative care approaches in people with dementia. In a systematic review of 20 mostly retrospective studies from 13 countries, it was found that medication adherence ranged from 17% to 42% across 7 studies. The factors contributing to non-adherence included patient characteristics (older age, female gender), condition, number and type of medications prescribed, and socioeconomic factors (literacy and level of education). Only two studies reported on interventions to improve adherence, telehealth home monitoring and treatment modification (transdermal patches in place of oral medications), and in both improvement was reported. Between study heterogeneity (including method for monitoring adherence) precluded meta-analysis, however, low levels of medication adherence in older people with dementia was demonstrated across the different study settings.
de Vries M, Seppala LJ, Daams JG, van de Glind EMM, Masud T, van der Velde N, et al. Fall-Risk-Increasing Drugs: A Systematic Review and Meta-Analysis: I. Cardiovascular Drugs. J Am Med Dir Assoc. 2018 Jan 30. pii: S1525-8610(17)30698-9.
Based on 131 studies this systematic review and meta-analysis investigated cardiovascular drug use among older people and found that use of Loop diuretics was significantly associated with increased risk for falls [adjusted Odds ratio 1.36 (95% CI, 1.17, 1.57)]. In contrast, beta-blocking agents were significantly associated with a decreased risk for falls [adjusted Odds ratio 0.88 (95% CI 0.80, 0.97)]. While further studies are called for, particularly with respect to beta-blocking agents, this comprehensive review including 45 individual cardiovascular drugs provides a useful overview of the potential association with fall risk.
Herman M, Horner K, Ly J, Vayl Y. Deactivation of Implantable Cardioverter-Defibrillators in Heart Failure: A Systematic Review. J Hosp Palliat Nurs. 2018 Feb;20(1):63-71.
The aim of this systematic review of adults with heart failure was to identify problems that may delay deactivation of implantable cardioverter-defibrillators (ICD) to avoid distressful events such as multiple electrical shocks within the last 24 hours of life. Based on nine, predominately US-based studies reporting on more than 25,000 patients in total, it was found that discussions with patients about deactivating ICDs are rare and patient knowledge lacking. Care providers were uncomfortable about initiating discussions and lacked confidence to perform deactivation. This review supports the need for improved patient and provider education in the US, but also highlights information needs around ICD use that are likely to be relevant in other settings.
Fringer A, Hechinger M, Schnepp W. Transitions as experienced by persons in palliative care circumstances and their families - a qualitative meta-synthesis. BMC Palliat Care. 2018;17(1):22.
Based on 14 studies conducted predominately in Sweden and Canada, this qualitative meta-synthesis examined the experiences of patients and their families during transitions in palliative care (change of place, in level of care, or in goals of care). In those settings, a number of supportive and distressing factors were identified that affected the experience of transition. Numerous role adjustments associated with these changes were also listed, with these adaptations striving to maintain normality in daily life. Awareness of these findings might help nurses (and others) to support patients with palliative care needs and their families when in transition.
Gnanamanickam ES, Dyer SM, Milte R, Harrison SL, Liu E, Easton T, et al. Direct health and residential care costs of people living with dementia in Australian residential aged care. Int J Geriatr Psychiatry. 2018 Jan 2. doi: 10.1002/gps.4842. [Epub ahead of print]
This analysis estimates the whole-of-system direct costs for people living with dementia in residential care and compares it to people without dementia living in residential care. Data were collected from 541 individuals living permanently in 17 care facilities across Australia. The average annual whole-of-system cost for people living with dementia in residential care was approximately AU$88 000 (US$ 67 200) per person in 2016. The cost of residential care constituted 94% of the total costs. The direct health care costs were comprised mainly of pharmaceuticals (55%), out-of-hospital attendances (25%), and hospitalisations (13%). While total costs were not significantly different between those with and without dementia, the cost of residential care was significantly higher and the cost of health care was significantly lower for people living with dementia.
Wahid AS, Sayama M, Jamshahid S, Kerwat D, Oyewole F, Saleh D, et al. Barriers and facilitators influencing death at home: A meta-ethnography. Palliat Med. 2018 Feb;32(2):314-328. doi: 10.1177/0269216317713427. Epub 2017 Jun 12.
This meta-ethnography review looked at barriers and facilitators influencing death at home. Seven overarching barriers were identified: lack of knowledge, skills and support among informal carers and healthcare professionals; informal carer and family burden; recognising death; inadequacy of processes such as advance care planning and discharge; as well as inherent patient difficulties, either due to the condition or social circumstances. Four overarching facilitators were observed: support for patients and healthcare professionals, skilled staff, coordination and effective communication
Pérez HCS, Ikram MA, Direk N, Tiemeier H. Prolonged Grief and Cognitive Decline: A Prospective Population-Based Study in Middle-Aged and Older Persons. Am J Geriatr Psychiatry. 2017 Dec 12. pii: S1064-7481(17)30559-6. doi: 10.1016/j.jagp.2017.12.00.
This study compared cognitive decline, assessed by repeated measures of different cognition domains, between persons with normal and prolonged grief, and a non-grieving reference population. The results suggest an association between prolonged grief and cognitive decline, but it was not possible to infer causality from this study nor detect any psychobiological mechanisms.
Norton SA, Ladwig S, Caprio TV, Quill TE, Temkin-Greener H. Staff Experiences Forming and Sustaining Palliative Care Teams in Nursing Homes. Gerontologist. 2018 Jan 3. doi: 10.1093/geront/gnx20.
Rapid ethnographic assessments of 14 nursing homes were undertaken to develop a deeper understanding of the contextual issues faced by staff in developing and sustaining PCTeams. Teams that were sustainable were able to leverage their participation in the intervention to incorporate the PCTeam into usual care and to develop long-term PC goals aligned with the mission of the facility. The administrators’ role in fostering the development and sustainability of the nascent PCTeams cannot be underestimated. The PCTeams were sustainable in homes where administrators made it an institutional priority, supported it tangibly, and were relatively stable in their roles.
Broady TR, Saich F, Hinton T. Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice. Palliat Med. 2018 Jan 1:269216317748844. doi: 10.1177/0269216317748844.
Family and friend carers play a significant role in supporting people with dementia at the end of their lives however, there is limited research on how these carers experience end-of-life care. In total, 22 papers were reviewed. Two main overarching themes of carer experiences were evident: (1) relationships and (2) the caring context. These overarching themes were shown to have an impact on the carer in terms of their sense of self and personal wellbeing.
Durepos P, Kaasalainen S, Sussman T, Parker D, Brazil K, Mintzberg S, Te A. Family care conferences in long-term care: Exploring content and processes in end-of-life communication. Palliat Support Care. 2017 Dec 29:1-12. doi: 10.1017/S1478951517000773.
Family care conferences (FCCs) aim to increase structured systematic communication around goals and plans for the end of life. FCCs were implemented in four long term care sites in Ontario, Canada. The purpose of this substudy was to examine FCC content and such guiding processes as documentation and multidisciplinary staff participation. Content analysis of documents showed that the most discussed domains were: (1) physical issues such as pain and nutrition); (2) EoL care such as music during death, visitors, withdrawal of medications, EoL symptom management, funeral planning; and (3) social care including support for families and recreation for residents. The least discussed domain was loss/bereavement.
Pereira-Salgado A, Mader P, O’Callaghan C, Boyd L, Staples M. Religious leaders’ perceptions of advance care planning: a secondary analysis of interviews with Buddhist, Christian, Hindu, Islamic, Jewish, Sikh and Bahá’í leaders. BMC Palliat Care. 2017 Dec 28;16(1):79. doi: 10.1186/s12904-017-0239-3.
This study looked at how religious leaders’ perspectives could improve how ACP programs respect patients’ faith backgrounds. Interview transcripts from a primary qualitative study conducted with religious leaders to inform an ACP website, ACPTalk, were used as the data source for analysis. The authors noted that most leaders had some understanding of ACP and held ACP in positive regard. However, religious followers’ preferences for end-of-life care reflected family and geographical origins, cultural traditions, personal attitudes, and religiosity and faith interpretations.
Hunt LJ, Lee SJ, Harrison KL, Smith AK. Secondary Analysis of Existing Datasets for Dementia and Palliative Care Research: High-Value Applications and Key Considerations. J Palliat Med. 2017 Dec 21. doi: 10.1089/jpm.2017.0309. [Epub ahead of print]
The authors looked at the role that secondary datasets could play in providing information germane to dementia and palliative care research. They conducted a broad search of a variety of resources to identify relevant datasets and to review potential applications and use of the data. They also noted potential validity and reliability concerns. The authors concluded that while secondary analysis of existing datasets requires consideration of key limitations, it can be a powerful tool for efficiently enhancing knowledge of palliative care needs among people with dementia.
Borotkanics R, Rowe C, Georgiou A, Douglas H, Makeham M, Westbrook J. Changes in the profile of Australians in 77 residential aged care facilities across New South Wales and the Australian Capital Territory. Aust Health Rev. 2017 Dec;41(6):613-620. doi: 10.1071/AH16125.
This study characterised the demographic profile and utilisation of a large cohort of residential aged care residents, including trends over a 3-year period. The researchers found that the median age at admission over the 3-year period remained constant at 86 years but there were statistically significant decreases in separations to home (z = 2.62, P = 0.009) and a 1.35% increase in low care admissions. Widowed females were the common residents as well as the oldest. They also had the longest lengths of stay. Most permanent residents had resided in aged care for less than 3 years. Approximately 30% of residents were not born in Australia. Aboriginal residents made up less than 1% of the studied population.
Mallery LH, Moorhouse P, McLean Veysey P, Allen M, Fleming I. Severely frail elderly patients do not need lipid-lowering drugs. Cleve Clin J Med. 2017 Feb;84(2):131-142. doi: 10.3949/ccjm.84a.15114.
After performing a systematic review, members of the Palliative and Therapeutic Harmonization (PATH) program and the Dalhousie Academic Detailing Service found that evidence does not support lipid-lowering therapy for severely frail elderly patients. They argue that there should be careful review of evidence before applying clinical practice guidelines to those who are frail.
Salamanca-Balen N, Seymour J, Caswell G, Whynes D, Tod A. The costs, resource use and cost-effectiveness of Clinical Nurse Specialist-led interventions for patients with palliative care needs: A systematic review of international evidence. Palliat Med. 2017 Jun 1:269216317711570. doi: 10.1177/0269216317711570. [Epub ahead of print]
This systematic review looked at the costs, resource use and cost-effectiveness of Clinical Nurse Specialist-led interventions for patients with palliative care needs. Those with palliative care needs were defined as seriously ill patients and those with advanced disease or frailty who are unlikely to be cured, recover or stabilise. The authors found that Clinical Nurse Specialist interventions could help in reducing specific resource use such as hospitalizations/re-hospitalizations/admissions, length of stay and health care costs. However, they noted that costs-effectiveness was not able to be established given variability in study types and quality.
Painter V, Le Couteur DG, Waite LM. Texture-modified food and fluids in dementia and residential aged care facilities. Clin Interv Aging. 2017 Aug 2;12:1193-1203. doi: 10.2147/CIA.S140581.
Dysphagia is common in people living with dementia and associated with increased risk of aspiration pneumonia, dehydration, malnutrition, and death. Texture-modified food and fluids (TMF) are commonly used. This review aimed to evaluate the evidence for TMF in dementia. After reviewing the 22 studies that met the inclusion criteria the authors concluded that there is a lack of evidence for people living with dementia and in residential care facilities that TMF improves clinical outcomes such as aspiration pneumonia, nutrition, hydration, morbidity, and mortality.
Milte R, Ratcliffe J, Bradley C, Shulver W. Evaluating the quality of care received in long-term care facilities from a consumer perspective: development and construct validity of the Consumer Choice Index – Six Dimension instrument. Ageing Soc. 2017 Sept:1-23 First View.
The Consumer Choice Index – Six Dimension (CCI-6D) is a new instrument designed specifically to evaluate the quality of care received in long-term care from a consumer perspective. The analyses presented in this paper present evidence of construct validity for the individual dimensions of the CCI-6D instrument, as assessed through the relationships with variables hypothesised to be associated with the dimensions of the instrument. Therefore, the CCI-6D shows promise in its ability to evaluate the quality of care processes from the perspective of consumers in long-term care facilities.
Shepperd S, Cradduck-Bamford A, Butler C, Ellis G, Godfrey M, Gray A, et al. A multi-centre randomised trial to compare the effectiveness of geriatrician-led admission avoidance hospital at home versus inpatient admission. Trials. 2017 Oct 23;18(1):491. doi: 10.1186/s13063-017-2214-y.
This trial registration describes planning for a multi-site randomised open trial of geriatrician-led admission avoidance hospital at home, compared with admission to hospital. Participants are randomised to geriatrician-led admission avoidance hospital at home or a control group of inpatient admission in a 2:1 ratio in favour of the intervention. The primary endpoint is 'living at home' (the inverse of death or living in a residential care setting).
Cartwright C, White B, Willmott L, Parker M, Williams G. Australian doctors’ knowledge of and compliance with the law relating to end-of-life decisions: implications for LGBTI patients. Cult Health Sex. 2017 Oct 25:1-13. doi: 10.1080/13691058.2017.1385854.
Little is known about medical practitioners’ knowledge of, or attitudes to, the law in this area, especially in relation to LGBTI people, or how the law influences their decision-making. An Australian postal survey explored knowledge and attitudes of medical specialists to legal issues relating to withdrawing/ withholding life-sustaining treatment from adults without capacity. The authors reported that less than one-third of respondents correctly identified the same-sex partner as the legally authorised decision-maker. They concluded that LGBTI people may face multiple obstacles to having their end-of-life wishes respected.
Cardona-Morrell M, Kim JCH, Brabrand M, Gallego-Luxan B, Hillman K. What is inappropriate hospital use for elderly people near the end of life? A systematic review. Eur J Intern Med. 2017 Jul;42:39-50. doi: 10.1016/j.ejim.2017.04.014. Epub 2017 May 11.
This review looked at the extent and causes of inappropriate hospital admission among older patients near the end of life. The authors found that the definition of ‘Inappropriate admissions’ near the end of life incorporated system factors, social and family factors meaning estimating the prevalence of inappropriate admissions varied substantially with non-clinical reasons reported such as poor availability of alternative sites of care; family requests; or too late an admission to be of benefit. The authors proposed two underlying concepts: Inappropriateness encompassing the patient's social circumstances or system factors; and avoidability when clinical management could have been dealt with at a lower level facility.
Bone AE, Gomes B, Etkind SN, Verne J, Murtagh FE, Evans CJ, et al. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliat Med. 2017 Oct 1:269216317734435. doi: 10.1177/0269216317734435. [Epub ahead of print]
Population ageing represents a global challenge for future end-of-life care. This study looked at where people will die from 2015 to 2040 across all care settings in England and Wales. The projections show that if current trends continue, numbers of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023.
Hilmer SN, Gnjidic D. Prescribing for frail older people. Aust Prescr. 2017 Oct 3;40:174-8.
People who are frail experience a higher incidence and severity of adverse drug events because of their medicine use and potential changes in pharmacokinetics and pharmacodynamics. Prescribing for these patients requires constant vigilance and review, considering the impact of every medicine, as well as overall drug load, comorbidities, function and goals of care. This article provides a useful overview of issues and considerations.
Fleming J, Calloway R, Perrels A, Farquhar M, Barclay S, Brayne C, et al. Dying comfortably in very old age with or without dementia in different care settings – a representative “older old” population study. BMC Geriatr. 2017 Oct 5;17(1):222. doi: 10.1186/s12877-017-0605-2.
This study looked at associations between factors potentially related to reported comfort during very old people’s final illness: physical and cognitive disability, place of care and transitions in their final illness, and place of death. The results showed that care homes can provide care akin to hospice for the very old and support an approach of supporting residents to stay in their care home or own home if possible. Findings on reported high prevalence of multiple symptoms can inform policy and training to improve older old people’s end-of-life care in all settings.
Silva RS, Caldeira S, Coelho AN, Apóstolo JLA. Forgiveness facilitation in palliative care: a scoping review protocol. JBI Database System Rev Implement Rep. 2017 Oct;15(10):2469-2479. doi: 10.11124/JBISRIR-2016-003.
The objective of this scoping review is to map the nature and extent of forgiveness facilitation interventions that have been implemented and evaluated in palliative care contexts.
De Roo ML, Tanghe MF, Van Den Noortgate NJ, Piers RD. Development and Validation of the Symptom Assessment to Improve Symptom Control for Institutionalized Elderly Scale. Am Med Dir Assoc. 2017 Oct 14. pii: S1525-8610(17)30480-2. doi: 10.1016/j.jamda.2017.08.013. [Epub ahead of print]
This paper reports on the development of a multiple symptom self-assessment tool for use in nursing homes. The scale was developed from a Delphi process. A study of its use with residents showed that nurses found that the SATISFIE instrument was useful, applicable in daily practice, and sufficiently comprehensible for the patients.
Forbat L, Chapman M, Lovell C, Liu WM, Johnston N. Improving specialist palliative care in residential care for older people: a checklist to guide practice. BMJ Support Palliat Care. 2017 Aug 2;0:1-7. Online First.
This study aimed to develop an evidence-based checklist in order to support specialist palliative care clinicians integrate care in residential nursing homes for older people. It was a grounded theory ethnographic study, involving non-participant observation and qualitative interviews. A palliative care needs round checklist was developed.
Cardona-Morrell M, Benfatti-Olivato G, Jansen J, Turner RM, Fajardo-Pulido D, Hillman K. A systematic review of effectiveness of decision aids to assist older patients at the end of life. Patient Educ Couns. 2017 Mar;100(3):425-435. doi: 10.1016/j.pec.2016.10.007. Epub 2016 Oct 11.
Decision aids (DAs) provide high quality, synthesised information to help patients and clinicians compare the risks and benefits of treatment options. These tools can assist in making a shared decision about what is the best option. DAs at the end of life (EoL) can be helpful at a time of prognostic uncertainty. Existing DAs for EoL care in older adults were reviewed to assess their effectiveness and acceptability, and the involvement of family in decision-making. Overall, the available DAs seemed to enhance patient or surrogate-decision-makers’ knowledge of the care options and to reduce decisional conflict. The authors suggest some future improvements in DAs to guide people in the complex and sensitive treatment choices at the end of life.
Currow DC, Phillips J, Agar M. Population-based models of planning for palliative care in older people. Curr Opin Support Palliat Care. 2017 Sep 16. doi: 10.1097/SPC.0000000000000304. [Epub ahead of print]
The world’s population is ageing more rapidly than ever before. To meet the current and projected care needs of older people, services require a broad understanding of demographic, clinical and health system issues. This review outlines the recent literature that can help to inform planning of palliative care services for older people.
Vermunt NPCA, Harmsen M, Westert GP, Olde Rikkert MGM, Faber MJ. Collaborative goal setting with elderly patients with chronic disease or multimorbidity: a systematic review. BMC Geriatr. 2017 Jul 31;17(1):167. doi: 10.1186/s12877-017-0534-0.
The number of morbidities and the proportion of people suffering from multimorbidity increase with age. A patient-goal-oriented approach to health care could be beneficial and contribute to a patient’s wellbeing and quality of life. This study describes the emerging concepts of ‘collaborative goal setting’ and ‘priority setting’.
Holyoke P, Stephenson B. Organization-level principles and practices to support spiritual care at the end of life: a qualitative study. BMC Palliat Care. 2017 Apr 11;16(1):24. doi: 10.1186/s12904-017-0197-9.
How can hospice palliative care - which recognises the importance of spiritual care at the end of life - better meet the religious, spiritual, and existential questions and needs often present at end of life? This study looked to hospice programs founded and operated on specific spiritual foundations to identify organisational-level practices that support high-quality spiritual care that then might be applied in secular healthcare organisations. Nine Principles for organisational support for spiritual care emerged from the interviews. They are presented as a potential multi-pronged framework for improving spiritual care, along with some organisational practices that could support each of the Principles.
Threapleton DE, Chung RY, Wong SYS, et al. Care Toward the End of Life in Older Populations and Its Implementation Facilitators and Barriers: A Scoping Review. J Am Med Dir Assoc. 2017 Jun 13. pii: S1525-8610(17)30225-6. doi: 10.1016/j.jamda.2017.04.010
A scoping review identified key themes in EOL care. The authors found that quality EOL care for older populations requires many core components but the local context and implementation issues may ultimately determine if these elements can be incorporated into the system to improve care. Changes at the macro-level (system/national), meso-level (organizational), and micro-level (individual) wall need to be harnessed to implement service changes to provide holistic and person-centred EOL care for elderly populations.
Hiam L, Dorling D, Harrison D, McKee M. Why has mortality in England and Wales been increasing? An iterative demographic analysis. J R Soc Med. 2017 Apr;110(4):153-162. doi: 10.1177/0141076817693599
Mortality increased in England and Wales in 2015. Demographic analysis indicates that the e largest contributors to this change in population life expectancy was from those aged over 85 years, with dementias making the greatest contributions in both sexes. The possible impacts of health and social system contexts were also raised.
Easton T, Milte R, Crotty M, Ratcliffe J. Where's the evidence? a systematic review of economic analyses of residential aged care infrastructure. BMC Health Serv Res. 2017 Mar 21;17(1):226. doi: 10.1186/s12913-017-2165-8.
This review aimed to summarise the existing literature of economic evaluations of residential care infrastructure. Fourteen studies were included in the analysis. The authors noted there was a wide variation in approaches taken for valuing the outcomes associated with differential residential care infrastructures and little specific economic analysis.
Huntley AL, Chalder M, Shaw ARG, Hollingworth W, et al. A systematic review to identify and assess the effectiveness of alternatives for people over the age of 65 who are at risk of potentially avoidable hospital admission. BMJ Open. 2017 Aug 1;7(7):e016236. doi: 10.1136/bmjopen-2017-016236.
What admission alternatives are there for older patients and are they safe, effective and cost-effective? This review found 19 studies and 7 systematic reviews relevant to the topic. A number of interventions were identified including paramedic/emergency care practitioners (n=3), emergency department-based interventions (n=3), community hospitals (n=2) and hospital-at-home services (n=11). The data suggested that alternatives to admission appear safe with potential to reduce secondary care use and length of time receiving care.
Morley JE, Arai H, Cao L, Dong B, Merchant RA, Vellas B, et al. Integrated Care: Enhancing the Role of the Primary Health Care Professional in Preventing Functional Decline: A Systematic Review. J Am Med Dir Assoc. 2017 Jun 1;18(6):489-494.
A number of validated screening tests for older persons at risk for physical and cognitive frailty have been developed. These tools can be used by primary care health providers to recognize older persons with early frailty. There are medical and lifestyle interventions that appear to have the ability to slow down the development of frailty. The use of computer-assisted diagnosis and management programs may also be helpful in increasing the reach and effectiveness of these screening activities. The evidence suggests that use of these programs by primary health providers may lead to improved function in older persons.
Cook I, Kirkup AL, Langham LJ, Malik MA, Marlow G, Sammy I. End of Life Care and Do Not Resuscitate Orders: How Much Does Age Influence Decision Making? A Systematic Review and Meta-Analysis. Gerontol Geriatr Med. 2017 Jun 12;3:2333721417713422. doi: 10.1177/2333721417713422. eCollection 2017 Jan-Dec.
With population aging, "do not resuscitate" (DNAR) decisions are becoming more common. This review examined the relationship between age and DNAR. Ten studies were included and eight showed that age affected DNAR independent of other mediating factors such as illness severity and likely outcome. Patients aged 75 to 84 and ≥85 years were more likely to have a DNAR compared with those <65 years. The authors noted that age increases the use of "do not resuscitate" orders, but more research is needed to determine whether this represents "ageism."
Ellis-Smith C, Evans CJ, Murtagh FE, Henson LA, Firth AM, Higginson IJ, et al. Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliat Med. 2017 Jul;31(7):651-660.
This study used focus groups and interviews to examine the content validity and acceptability of the Integrated Palliative Care outcome Scale for Dementia. Participants saw it as a comprehensive and acceptable caregiver-reported measure and that it could be used without professional training.
Wongrakpanich S, Susantitaphong P, Isaranuwatchai S, Chenbhanich J, Eiam-Ong S, Jaber BL. Dialysis Therapy and Conservative Management of Advanced Chronic Kidney Disease in the Elderly: A Systematic Review. Nephron. 2017 May 25. doi: 10.1159/000477361. [Epub ahead of print]
This systematic review looked at retrospective and prospective cohort studies of older adults with stage-5 chronic kidney disease who chose dialysis (hemodialysis or peritoneal dialysis) or opted for conservative management (including management of complications of CKD and palliative care. Generally older patients opted for more conservative management but there was significant heterogeneity in the studies.
Burkett E, Martin-Khan MG, Scott J, Samanta M, Gray LC. Trends and predicted trends in presentations of older people to Australian emergency departments: effects of demand growth, population aging and climate change. Aust Health Rev. 2016 Jul 29;41(3):246-253.
The present study examined national ED presentation trends from July 2006 to June 2011, with specific emphasis on trends in presentation by age group. They found growth in ED presentations was greater than expected from population growth alone. Rates of presentation per head of population were highest for those over 85 years. This highlights the need for ED workforce planning and education in caring for this complex patient cohort. Funding models to incentivise investment in ED avoidance and substitutive care models targeting older people may also be needed.
Wallace CL, Swagerty D, Barbagallo M, Vellas B, Cha HB, Holmerova I, Dong B. IAGG/IAGG GARN International Survey of End-of-Life Care in Nursing Homes. J Am Med Dir Assoc. 2017 Jun 1;18(6):465-469.
This study surveyed 18 long-term care experts from 15 countries in a two step process. Experts provided definitions of core concepts such as palliative care and hospice care and then provided their level of agreement to a series of statements about end of life care. Overall, the experts agreed that hospice and palliative care should be available in long term facilities. However there was substantial variation in the access to palliative care and the need for greater education and training was highlighted.
Froggatt K, Payne S, Morbey H, Edwards M, Finne-Soveri H, Gambassi G, et al. Palliative Care Development in European Care Homes and Nursing Homes: Application of a Typology of Implementation. J Am Med Dir Assoc. 2017 Jun 1;18(6):550.e7-550.e14. doi: 10.1016/j.jamda.2017.02.016
Institutional long-term care for older people varies across Europe reflecting different models of health care delivery. This study undertook a mapping exercise in 29 European countries to identify how palliative care is being implemented into the care home setting. The researchers completed a descriptive and thematic analysis of the collected data and identified levels of implementation - macro at the policy level with legislative, financial and regulatory drivers, meso using education, tools, frameworks and research, and micro the actual delivery level. The authors concluded that implementation at the meso and micro levels is supported by macro-level engagement, but can happen with limited macro strategic drivers.
Cardona-Morrell M, Kim JCH, Brabrand M, Gallego-Luxan B, Hillman K. What is inappropriate hospital use for elderly people near the end of life? A systematic review. Eur J Intern Med. 2017 May 11. pii: S0953-6205(17)30162-0. doi: 10.1016/j.ejim.2017.04.014. [Epub ahead of print]
This systematic review suggests that the definition of 'inappropriate admissions' near the end-of-life incorporates system factors, social and family factors. This makes it difficult to provide an accurate estimation of clinically inappropriate hospital use by older people.
Harrison JK, Reid J, Quinn TJ, Shenkin SD. Using quality assessment tools to critically appraise ageing research: a guide for clinicians. Age Ageing. 2017 May;46:359-365. doi: 10.1093/ageing/afw223.
This article is a review of research methods. It aims to help aged care practitioners learn about the principles and processes associated with critical appraisal. A range of quality assessment tools are discussed and there is advice on when it is useful to use tools in appraisal.
Tait PA, Cheung WH, Wiese M, Staff K. Improving community access to terminal phase medicines in Australia: identification of the key considerations for the implementation of a core medicines list. Aust J Prim Health. 2017 May 11. doi: 10.1071/PY16153.
Access to medicines to support people who are dying at home can be challenging. This study looked at the views of specialist and generalist health professionals around community access to terminal phase medicines. Six themes emerged from focus group discussions around accessing medicines for management of terminal phase symptoms. They were: Medication Supply; Education and Training; Caregiver Burden; Safety; Funding; and Clinical Governance.
Mitchell GK, Senior HE, Rhee JJ, Ware RS, Young S, Teo PC, et al. Using intuition or a formal palliative care needs assessment screening process in general practice to predict death within 12 months: A randomised controlled trial. Palliat Med. 2017 Mar 1:269216317698621. doi: 10.1177/0269216317698621.
This study aimed to determine if screening for likely death within 12 months is more effective using screening tools or intuition. An RCT compared the Surprise Question with the SPICT against unguided intuition. The study showed that the screening tool was better at predicting actual death than intuition, but had a higher false positive rate.
Page updated 02 November 2020