Cognitive Impairment and Dementia - Synthesis

Cognitive Impairment and Dementia - Synthesis


Palliative care provision in the context of older age needs to consider some specific cognitive issues including confusion, delirium, mild cognitive impairment, dementia and/or communication difficulties. Dementia is likely the better known of these. Dementia is a life-limiting condition that has a significant impact on many aspects of a person’s physical and mental health. Dementia is becoming better recognised as a terminal condition for which palliative care is appropriate and necessary. [1,2] Access to quality palliative care in a person’s home or in a residential aged care facility is critical to supporting people with dementia to die well. [1]


The term Mild Cognitive Impairment (MCI) emerged from clinical studies describing older people who had some cognitive impairment without a diagnosis of dementia. [3] The term mild neurocognitive disorder (mild NCD) defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) Task Force shares considerable overlap with this and both terms describe cognitive impairment that does not interfere with functional capacity for activities of daily living. [3] Regardless of which definition is used, this mild form of cognitive impairment in older people is associated with a higher risk for dementia or major NCD although it does not always lead to this outcome. [4,5]

In contrast, dementia is a more severe and progressive condition which can lead to profound cognitive impairment, inability to communicate verbally and complete functional dependence. [6] Cognitive impairment carries an increased risk of mortality, and this increases with severity of dementia, although the mechanism for this is not fully understood. [6,7]

Dementia is an incurable, life-limiting condition. [6,8-12] It is the leading cause of cognitive decline and the second leading cause of death and disability in Australia. [13] Dementia is not a specific disease, instead, it describes a group of symptoms affecting intellectual and social abilities severely enough to interfere with daily functioning. [9,10,14] Every person with dementia will experience the condition in a unique way.

Age is one of the biggest risk factors for dementia and our ageing population in Australian means that dementia prevalence is increasing. [10,15,16] The estimated prevalence of dementia in Australia in 2018 was 436,366 persons, and this is predicted to rise to 1,076,129 by 2058. [17] Approximately 9% of people using home care in 2019 received the dementia and cognition supplement. At the same time, 53% of people in permanent residential aged care had been diagnosed with dementia. [18] Adequate and appropriate end-of-life or palliative care is not as commonly offered to this cohort as it might be to people dying from cancer. [6,10,12,19] This is at least in part explained by the variability of the dementia trajectory compared to the trajectory of other terminal conditions. [12] Age, gender, type of dementia, the severity of the illness at the time of diagnosis, and the presence of any co-existing conditions can all impact this trajectory. [1]

A timely diagnosis of dementia provides the opportunity for people living with dementia, their families and carers to undertake advance care planning. [7]

Quality Statement

Overall, the quality of the included reviews is good with systematic reviews being of acceptable to high quality. Six systematic reviews [6,10,12,19-21], a white paper [22] a longitudinal study [23] and another primary study [24] focussed on palliative care or a palliative approach and dementia. Two guidelines were retrieved for the care of people with dementia and these include guidance specific to palliative care. [14,25] In total, 40 systematic reviews [6,8,10,12,19-21,26-58], an integrative review [59] and a meta-analysis [60], a rapid review [61], two guidelines [14,25] and a white paper [22] were included which most focussing on dementia. One guideline in relation to the assessment of pain in older people was also included [35] along with additional sources to provide context to this topic. [1-5,7,9,11,13-18,23,24,62-98]

The terms hospice and palliative care are variably used across publications and the terminology used in individual studies has been retained in this synthesis. Both terms denote interprofessional care to optimise quality of life where a person’s life course is disrupted by a life-limiting illness. [86] In the literature, hospice care is considered to be under the spectrum of palliative care and generally describes a community-based program that provides interprofessional care for people with a terminal illness (expected survival <6 months in the USA) and their families that includes care from symptom management to bereavement care. [86] In Australia, hospices are synonymous with inpatient palliative care units. [88] Palliative care involves interdisciplinary care that focuses on improving the person’s quality of life by addressing their physical, emotional, and spiritual needs, and on supports their families. [86,87]

The terms nursing home, long-term care, and residential aged care are used in the literature to describe care. Long-term care describes care for people needing support in many facets of living over a prolonged period of time. [90,91] It can be delivered in the home, in short-term settings (such as respite facilities) or in permanent residential care homes. [90,91] Older people are the primary recipients of long-term care. [90] Residential aged care facility is the term commonly used in Australia; nursing home and care home are the terms commonly used in the UK, Canada and USA. [90]

Evidence Synthesis

In the following, much of the evidence is based on diagnosis of MCI or dementia, and hence these terms are used throughout. However, the newer terms mild NCD and major NCD are defined in the DSM-5 manual to describe MCI-like conditions and dementia respectively and are likely to be used in more recent publications. [3] In brief, DSM-5 defines three neurocognitive disorders: (1) delirium, (2) mild neurocognitive disorder (mild NCD) and (3) major neurocognitive disorder (major NCD) or dementia. In defining loss associated with these diagnoses the DSM-5 includes six cognitive domains: complex attention, executive function, learning and memory, language, perceptual-motor and social cognition. [5] Mild NCD, like MCI, does not interfere with the person’s capacity for independence in everyday activities although it may require greater effort to achieve some tasks. In contrast, loss in at least one of the six cognitive domains experienced with major NCD or dementia impacts on a person’s ability to perform usual activities of daily living. Advanced dementia is characterised by profound cognitive impairment, affecting functional dependence and communication. [6]

Cognitive changes

Mild cognitive impairment (MCI) can be an intermediate state between normal cognition and dementia. [9] A six-year longitudinal study conducted in Australia found 12.8 per cent of people with MCI progressed to dementia and 15 per cent reverted to cognitively normal. [23] Not all MCI progresses to dementia, but regular assessment may be useful to monitor for changes. The level of impairment in daily living also varies. Some of the cognitive changes observed in MCI are considered part of the normal ageing process and there is increasing evidence that others are an early manifestation of dementia. [41] People who ultimately receive a diagnosis of MCI or dementia typically have observable neurological and cognitive differences many years prior to diagnosis. [9,41]

The most common forms of dementia include Alzheimer’s disease, vascular dementia and dementia with Lewy bodies. [7,9] Each type of dementia will have particular symptoms and each will have different patterns of cognitive decline because the physiological changes can occur in different parts of the brain. Dementia causes progressive impairments in at least two of the following cognitive domains: (1) memory, (2) executive function (reasoning, planning, and judgement), (3) visuospatial ability, (4) language, (5) and personality or behaviour. [9,10] These changes are associated with functional dependence. [7,9] You can read more on CareSearch page Advanced Dementia.

'Change points' indicate an acceleration in the rate of cognitive decline which precedes diagnosis of MCI or dementia or terminal decline and these may occur years before diagnosis or death. [41] Change points have been investigated to identify the earliest possible biomarkers of neurodegenerative processes and modifiable risk factors associated with the onset or rate of cognitive decline. [41] The findings are inconclusive, but suggest a sequence preceding Alzheimer’s Disease with early decline in verbal memory, followed by visuospatial ability, then fluency and executive functions, and lastly, verbal IQ. [41]

Screening for MCI and dementia

Many people with dementia will experience an increasing need for assistance with more basic activities of daily living (ADLs) such as bathing, dressing, and feeding. Therefore, screening is important so that assistance can be put into place in a timely manner. [9] The Montreal Cognitive Assessment (MoCA) is a brief and validated screening tool that is freely available and has high sensitivity and specificity for detecting mild cognitive impairment and dementia. [9,62,66] There are also indications that the Mini-Addenbrooke's Cognitive Examination (M-ACE), DemTect, and Memory and executive screening (MES) are useful for MCI diagnosis. [66,67] Brief and effective screening tools that can aid in identifying dementia include the Mini-Mental Sate Examination (MMSE), Montreal Cognitive Assessment (MoCA), and the Mini-Cog. [9]

Advanced dementia can be diagnosed and staged by using a validated tool. Advanced dementia corresponds to stage 6d or above on the Functional Assessment Staging Test (FAST), CDR-3 (severe) on the Clinical Dementia Rating Scale (CDR) or stage 7 on the Global Deterioration Scale (GDS). [6]

People with dementia are frequently transferred to an emergency department (ED) and/or admitted to hospital for care-related issues. [9,27,63] Despite the importance of screening for cognitive dysfunction to provide an accurate diagnosis and person-centred care, most ED staff do not conduct this screening, even in the geriatric-specific ED. [27] A meta-analysis by Carpenter et al. found that in older adult emergency department (ED) patients, the Abbreviated Mental Test (AMT-4) most accurately ‘ruled in’ dementia, and the Brief Alzheimer’s Screen most accurately ‘ruled out’ dementia. [27] They are preferable to the MMSE in the ED environment as they are brief and relatively easy to conduct. Although neither is a stand-alone diagnostic test, they are useful in the ED setting in determining when a formal cognitive assessment or Comprehensive Geriatric Assessment would be useful. [27]

Screening and diagnostic assessment of people from non-English speaking backgrounds

Screening tests can be skewed by language barriers, literacy levels, and sensory impairments. [27]

The Kimberley Indigenous Cognitive Assessment tool (KICA) was developed and validated in a number of Indigenous communities in the Kimberley region of Western Australia (WA) as a culturally appropriate assessment tool to evaluate extent of dementia and other cognitive impairments in members of the Indigenous community. The KICA is recommended for use with remote living Indigenous Australians for whom the use of alternative cognitive assessment tools is not considered appropriate. [14] The modified KICA (mKICA) is recommended as an alternative to the Mini Mental State Exam (MMSE) in urban and rural Indigenous Australian populations if illiteracy, language or cultural considerations suggest that it is a more appropriate tool. [14] A full set of KICA resources (2006) are available from Aboriginal Ageing Well Research (freely available after creating an account).

The Rowland Universal Dementia Assessment Scale (RUDAS) is a short cognitive screening instrument designed to minimise the effects of cultural learning and language diversity on the assessment of baseline cognitive performance. The RUDAS should be considered for assessing cognition in CALD populations. [14] RUDAS scoring guide and scoring sheets are available from Dementia Australia.

A palliative approach for dementia

Despite the progressive decline that is characteristic of dementia, it is often not recognised as a life-limiting illness or only considered as such in the terminal phase. [10,22,24] Early access to palliative care can improve quality of life [9,19,22] and this is an emerging area of research. [6] Care for individuals with advanced dementia should involve a number of key palliative interventions, including advance care planning, avoidance of potentially inappropriate interventions, hospice referral, and support for the person’s family and/or carer(s).

In Australia and globally, there are attempts to improve early diagnosis, and to provide better information and support to people living with dementia and their families, including access to palliative care services to improve end-of-life care. [6,22,65] In 2014, the European Association for Palliative Care (EAPC) developed a comprehensive description of optimal palliative care in dementia. [22] Full consensus was reached on the following ten domains of care [22]:

  1. applicability of palliative care
  2. person-centred care, communication, and shared decision-making
  3. setting care goals and advance planning
  4. continuity of care
  5. prognostication and timely recognition of dying
  6. optimal treatment of symptoms and providing comfort
  7. psychosocial and spiritual support
  8. family care and involvement
  9. education of the health care team
  10. societal and ethical issues.

In the eleventh domain - avoiding overly aggressive, burdensome or futile treatment - only moderate consensus was reached on the recommendations of assisted hydration outside of the dying phase and permanent enteral tube nutrition. [22]

Person-centred care, communication and shared decision-making; and optimal treatment of symptoms and providing comfort were considered as care and research priorities. [22]

The EAPC has also described a model of appropriate goals of care: prolongation of life, maintenance of function, maximisation of comfort and bereavement support. [22] These goals align with the progression of dementia yet are not specific to a certain stage as they may apply simultaneously with a certain goal or goals being a priority. [22] The EAPC emphasises the applicability and potential benefits of palliative care, the importance of prognostication and timely recognition of dying and avoiding aggressive treatments. [22] Prognostication in dementia is difficult, there is no specific prognostic tool in dementia, and dementia is often not seen as a life-limiting condition for which palliative care can be beneficial. [9,22]

Guidelines for the care of people with dementia are available to assist with care decisions and these include guidance specific to palliative care. [14,25] Multiple guidelines recommend clinicians assess need for palliative care services, particularly during end of life. However, criteria or triggers for referral to specialists or hospice are needed. [20]

Care for people living with advanced dementia should involve a number of key palliative interventions, including advance care planning, symptom management, hospice referral, carer support, and avoidance of potentially inappropriate interventions. [15] Nursing home referrals to specialist services or staff training in palliative care may improve quality of life and reduce discomfort for residents including those with dementia. [20,21] However, the evidence for this is uncertain. [21] Similarly, palliative care interventions based on organisation and delivery of care for people with advanced dementia may increase comfort in dying [12], but this is not likely to be clinically significant. Review of advance care planning (ACP) for this population also provided uncertain evidence of a possible increased documentation of advance directives and discussions about goals of care.

Criteria for referral to specialist palliative care

The importance of palliative care for people with dementia is highlighted in the NICE guidelines, “From diagnosis, offer people living with dementia flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be.” [25] However, in contrast to people with cancer, criteria for referral of people with dementia to specialist palliative care are poorly defined. [49] Mo et al. found dementia stage to be a commonly applied criteria and this included both advanced and newly diagnosed stages. [49] However, very few studies included physical or psychological needs-based criteria for referral. [49] Where they did, poor nutritional status was the most often applied followed by functional decline. [49] Difficulty in defining end of life in dementia can also mean that even at advanced stages people with dementia may not receive timely palliative care or, if required, referral to a specialist palliative care service or hospice. [52] A dependence on “advanced stages” or sequential progression of symptoms as defined by assessment tools can also mean that some will die without palliative care or referral. For example, many people with dementia develop stages of the FAST assessment tool in a non-sequential order. [52] Much of the evidence on palliative care for people with dementia is focused on those with advanced dementia. Complexity in defining end of life and optimal timing for palliative care for people with dementia suggests a need to refocus effort on responding to individual needs as proposed by NICE. [25]

Advance Care Planning (ACP)

Given the inevitable loss of capacity and communication, advance care planning is relevant for adults living with dementia. [26,30,39] Documenting care preferences and family meetings can help decisions about current and future care to be made in line with the person’s wishes and lessen the impact of supporting someone with dementia. [10,14,68]

The perception that discussing advance care planning close to the time of diagnosis causes undue stress and anxiety has been countered by strong evidence from a systematic review which reports that patients and families who participated in advance care planning did not report elevated levels of stress, anxiety or depression. [30] Read more on this topic in Advance Care Planning.

Decision-making in aged care

All adults have an equal right to make decisions that affect their life and to have those decisions respected. [79] The increasing prevalence of dementia among people receiving aged care services and the growing focus on consumer-directed care make it important for aged care services to be able to provide maximal support for people in their care to participate in decision-making. [79]

Decisions can span from those relating to everyday care through medical treatment to long-term care placement. [56] Evidence suggests that although most persons with dementia report wanting to participate in shared decision-making with their family carers, many do not remain involved once their symptoms move beyond mild dementia. [56]

For people living with dementia, shared decision-making is an essential aspect of person-centred care and is increasingly considered important for services providing care of people living with dementia. [29,56] People living with dementia value opportunities to be involved in everyday decision-making about their care, yet this is consistently underestimated by carers and aged care staff. [29] Aged care staff and carers can best facilitate shared decision-making if they [29]:

  • encourage memory and routine
  • recognise the abilities and rights of the person living with a cognitive impairment as capable of influencing the decision
  • give and share information, offer support and reinforce opinions.

Supported decision-making

Supported decision-making is the process of enabling a person to make and/or communicate decisions about their own life when they need help with making decisions. In this process, the decision-making is supported, but the decision is theirs. [79] Access to the support necessary for them to make, communicate and participate in decisions that affect their lives is important. [79]

Person-centred care

Person-centred care aims to maintain and nurture ‘personhood’ in the person with dementia. [8] Instead of focussing on a trajectory of irrevocable decline related to neurodegenerative changes, person-centered care recognises that the person’s experience of dementia is not solely determined by neuropathology but also by psychosocial factors. [44] Person-centred care focuses on supporting the person’s remaining abilities and places the person at the centre of all care planning and tailoring care according to their needs and preferences. [8,58] It, therefore, brings the person into shared decisions on their care. [8]

A review by Chenoweth et al. [8] found that person-centred care embedded throughout an organisation for people living with dementia had a significant effect on increased quality of life, and a non-significant improvement in some neuropsychiatric symptoms (i.e. apathy, sleep disorders, hallucinations, delusions, psychosis, aggression), and well-being. [8] There was no change to depression and agitation. [8] The 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.

A review by Caspar et al. [58] found that basing care on individual preferences and personal characteristics, was significantly associated with the effectiveness of the nonpharmacological ways of responding to behavioral and psychological symptoms of dementia. Additionally, these authors noted that the interventions that included individualised approaches that promoted self-determination, desire for meaning, intrinsic motivation, and value were most effective. [58]

Dementia Care Mapping is a structured observational tool more commonly used in the UK that supports the implementation of person-centred care in a care home. It can be used as an assessment of residents’ well-being and quality of life and/or as an intervention to promote practice change. [44] Careful observation of the person over the course of a typical day provides the basis of an action plan developed by the care team which is implemented and subsequently reviewed. [44] This process can help care home staff to consider the causes of behaviours such as agitation and aggression which can in turn inform the management of these behaviours. [44] Recent primary studies that have explored the effect on quality of care and cost-effectiveness of dementia care mapping as an intervention have highlighted the challenges with its implementation. [44,72-76]

Intimacy and sexuality

Consent is an important component of healthy sexual relationships. [55,77,78] Cognitive impairment can interfere with the person’s ability to express consent to the formation of a relationship and physical intimacy. Difficulties may be experienced in their ability to understand the who, what, where, and when and safety aspects of sexual activity; their awareness of potential risks of sexual engagement, appropriateness, and consequences; their decisional capability to initiate, engage or refrain from sexual activity and their ability to take self-protective measures against unwanted advances. [55] Determining a person’s ability to consent and therefore enjoy a healthy and safe sexual relationship(s) is complex and requires a person-centred approach that considers aspects such as consent capacity, sexual identity, beliefs, values, culture, and life history. [55] Aged care staff can find this aspect of care of people with dementia challenging as it involves navigating issues such as consent, protection and duty of care, resident self-expression, dignity, and respect. [77]

Whether and to what extent a person with dementia retains capacity, insight and the ability to express consent varies and is part of the unique experience of dementia for every person. In situations where the person with dementia appears to understand the nature of the sexual activity, express interest or desire in the act, and indicate active approval, consent may be considered valid. [78]

In the case of advanced dementia affecting one person in a long-standing or married relationship, the assumption can often be made that consent previously made in a loving relationship will remain even after the person loses the ability to consent. [55] This continuation aspect of a sexual relationship with someone living with a cognitive disability is the Prior Consent Thesis, which deems current sexual relationships permissible, providing both people in the relationship gave consent to sex with each other before. [55] The Australian clinical practice guidelines and principles of care for people with dementia recommend that health and aged care staff identify the needs of people with dementia arising from diversity including gender and sexual orientation. [14] Consent in the context of sexual relationships is not included in these guidelines. [14]


Difficulty with communication can make management of symptoms of dementia more challenging [19] and the presence of other health conditions is not uncommon. [36]

Because of deficits in memory, language, judgement, and reasoning ability, people in more advanced stages of dementia often have difficulty recognising and reporting symptoms or side effects, adhering to medication, and complying with treatment and follow-up recommendations. [36] Refusal of care can also be challenging for carers and health professionals and is more common in advanced dementia. Contributing factors include lack of understanding of carer intentions or unmet needs such as pain or hunger. [43] Backhouse et al. found some evidence that reducing ‘elder-speak’ (use of overly endearing terms and tones, repetition, slowness of speech, or simplified sentences) and negative communications can reduce refusal behaviours in dementia. [43] In that study, playing music, approaches to bathing, and some psychosocial interventions also helped but aromatherapy or massage did not.

Healthcare professionals’ (HCPs) communication skills are important in the decisions as to future care of people living with dementia. [32-34,42] The communication skills of HCPs are critical especially when tackling challenging topics such as mortality and institutionalisation. [32] Understanding and respecting the preparedness of the person with dementia and their family to broach these topics is important in the decision-making process. [32] You can read more about this in Communication Skills.

Transition to long-term care facilities

Family carers contribute significantly to the care at home of people with dementia. [20,31,37] Caring for a person with dementia can be challenging and resilience of carers has been explored to understand how some carers manage better. [28,38,51,61] You can read more about this in Resilience. The decision to move into a long-term care facility such as residential aged care by people with dementia and their carers often occurs when they reach the limits of their physical, emotional, and social capacity. [45] This burden of disease and disability is further increased with the combination of dementia and multimorbidity. Frequently transition is in response to a crisis event with carers unprepared for the inevitable but unpredictable escalation in needs. Delaying this transition benefits the person’s autonomy as well as reducing demand for external services including hospitals and long-term care facilities. [50] Decisions about long-term care are often made at advanced stages of dementia associated with severe impairment in communication and executive function. [45] At this time, trust in carers and self-awareness of their own need for more support may help people with dementia to cope with any resentment at the loss of autonomy.

Movement into residential care is often associated with depression and feelings of guilt among residents and carers. Interventions based on education/skill training, psychoeducation, and psychosocial support have been examined, but the evidence is inconclusive. [50,51] Nevertheless, for some continued involvement as part of the care team is valued as is open communication with care staff. [45]

Emerging evidence suggests that home care support and case management can delay transition to long-term care for people living with dementia. [54] In these instances, effective home care needs to comprise a wide variety of services and complex, multifactorial, individualised interventions. [54] Allied health services as single focus interventions have shown promise in reducing admissions but more research is required. [54] Case management is a key component in these complex interventions as is the use of a comprehensive assessment process with good communication and liaison with GPs, individualised care plans and interventions with frequent client contact if required and regular reviews. [54] Who is best placed to deliver the assessment and case management is not clear. [54]

Symptom management

Symptom identification and management should be centred on the person’s individual needs. The most common symptoms associated with dementia are pain, dyspnoea, depression and agitation and these are increasingly experienced as the person approaches the end of their life. [6,14] Advanced dementia is the stage of profound cognitive and physical impairment. It is characterised by dysphagia, incontinence, loss of the ability to ambulate independently, [9] inability to communicate, and severe memory decline. [6,7,9,10,19] While some symptoms are more common than others, there are commonalities among all end-stage diseases and symptom identification and management should be centred on the person’s needs. [6,14,19,22,25]


Assessment of symptoms can be challenging, and under-recognition and under-treatment of pain and other symptoms is common in people with advanced dementia. [6,10,22] As with late stages of other conditions, care should be taken to consider the benefit of any medication and deprescribing may benefit the person with dementia by reducing unnecessary side effects. [7,14,25] Over treatment with burdensome treatments around the time of death has been widely reported including antibiotics, enteral feeding, and unnecessary hospitalisations. [26]

Integrated Palliative care Outcome Scale for Dementia IPOS-Dem is designed to support systematic assessment of care home residents with dementia and incorporates common symptoms and problems experienced by this population. IPOS-Dem adapts IPOS as the latest version of the POS family of comprehensive measures adapted. [82,85] These measures are established and validated and widely used in clinical practice and research nationally and internationally. [85] The adaptation includes dementia-specific symptoms and concerns (such as delusions) and symptoms common in older people with multi-morbidities (such as pain or constipation) and developed for use by unqualified care home staff who provide the majority of direct care in care homes. [82,85]

People with a chronic medical condition and moderate-to-severe cognitive impairment (including diagnosed and undiagnosed dementia) have a higher risk of mortality, of longer period in hospital, and of decreasing function or clinical deterioration. [36] Significant cognitive impairment also makes it more likely that the person will not recognise or respond appropriately to early symptoms of a chronic conditions, geriatric syndromes, and decreasing function. [36]


The ability to assess pain and manage pain for people with dementia is affected by their reduced ability to report their pain. [9] Assessment of pain is complex as it might fluctuate over time and is influenced by individual interpretation of assessment tools. [46] It is best assessed via a combination of patient reports, carer reports, and direct observation of the person. [9] There are many validated behavioural assessment tools available to help health care professionals and informal carers assess pain in non-verbal adults. [35,37,48] These include the Pain in Advanced Dementia (PAINAD) and Doloplus 2. [9] The Abbey Pain Scale remains popular in both Australia and the UK yet there has been limited research into validating this tool. [35] Emerging evidence from two small-scale primary studies suggests that PainChek can be useful in identifying pain in aged care residents with moderate to severe dementia. [83]

Once a tool has been chosen its use should be used in follow up assessments as part of a broader approach. A review of pain assessment and management in people living mostly in residential aged care with dementia found that comprehensive models with multidisciplinary team involvement are essential. [46] Routine use of assessment tools alone had minimal effect. Use of analgesia was found to improve pain but a focus on this alone increased the occurrence of adverse effects. Evidence is emerging for a balanced approach between analgesia and non-pharmacological approaches to reduce pain level and pain-related behaviours. [46] The choice of analgesics should be based on the severity of the person’s presenting pain, their pain and analgesic history, the interaction of the analgesic with co-existing conditions, and the care setting and support services. [9]


Delirium is an acute, generally reversible, state of confusion causing a change to cognition. [69,99] The cause of delirium can be multifactorial and includes opioid use and dehydration, both of which can be reversed with medical attention. The risk of developing delirium is particularly high in end-stage diseases, and cognitive impairment can increase the risk of onset. [69,99,100] Where an older adult with dementia experiences delirium, it is often associated with prolonged hospitalisation, decline in cognitive and physical functioning, rehospitalisation, placement in residential aged care, and death. [69,99]

In end-stage cancer and other life-limiting diseases, cognitive impairment can be overlooked or mistaken for symptoms of delirium. [69] Delirium is an acute state of confusion causing a change to cognition and can be difficult to diagnose. [69] Despite being difficult to distinguish, differences between delirium and dementia include fluctuating level of consciousness, rapid appearance of symptoms with incoherent speech.

Where older adults with dementia experience delirium, it is often hard to discern symptoms of each and delirium is often highly attributed to mortality. [69] Important characteristics in recognising delirium in a person with dementia is the acuteness of the change in mental status (fluctuating course, inattention, and disorganised thinking or altered level of consciousness). [99] You can read more on this topic on the CareSearch website: Delirium.

Neuropsychiatric symptoms

Neuropsychiatric symptoms or behavioural and psychological symptoms of dementia (BPSD) are common in advanced dementia. [58] These include depression, psychosis, agitation, and delirium.

Although recognition of BPSD was intended to improve care, in recent years, concerns about use of the term have been expressed. While stigmatisation is part of this discussion, of particular concern is the associated over-medication, use of chemical restraint, and inadequate effort to understand the person with dementia and their changed behaviour. [92] Behaviours exhibited by a person with dementia can arise from biological, psychological, social, and environmental stressors. A person’s behavioural responses to these are highly personal, context-dependent, and can evolve with time/changes in the brain and vary according to the type of dementia. [92] Cunningham et al. [92] note the importance of acknowledging the degenerative nature of dementia and its highly variable impact with a small number of people displaying behaviour that does pose a serious risk to themselves and others. While discussion of alternative terminology continues, Cunningham et al. [92] suggest that use of the term BPSD may be reasonable in clinical or research contexts focused on understanding the person and their behaviour but should never be used to describe a specific behaviour or symptom. ‘Instead, each behaviour should be named neutrally and the impact of that behaviour should be described in a clear and objective manner.’(p. 1112) [92] The emphasis should be on identifying and responding to the underlying causes of the person’s behaviour.

Strategies for managing these include non-pharmacological and pharmacological approaches. Non-pharmacological interventions, such as music therapy, massage and touch therapy or physical activity should be used in the first instance. [47,71,89] Changes to the person’s environment, routine and tasks may help to reduce distress in day-to-day activities. [89] Dementia Australia have published help sheets on daily care (e.g. hygiene, dressing, safety, intimacy and sexual issues), behavioural issues (including sundowning, wandering, aggression, agitation), and changes that can be made to the person’s environment. Dementia Support Australia hosts resources (guides and help sheets) for clinicians and families which include managing/dealing with BPSD.

Anti-psychotic medication is not recommended for the management of psychosis or agitation unless the symptoms are so severe the person is at risk of harming themselves or others. [14] The risks and benefits of using medication to manage BPSD need to be carefully considered. [89] When psychotropic medication (antidepressants, anxiolytic/hypnotics or antipsychotics) is prescribed, a behaviour support plan, careful monitoring for adverse effects and regular evaluation and review must be part of the process. [80,89]

As of 1 September 2021, it is a requirement for all residential aged care providers to have behaviour support plans (BSP) in place for consumers [81]:

  • who need behaviour support,
  • where the use of a restrictive practice has been assessed as necessary, and
  • where a restrictive practice is being used.

For more information see: Dementia Support Australia's Dementia Support Plans.

Other medication approaches such as anti-depressants may have some benefit, but the length of time required to reach therapeutic effect may limit usefulness for the patient with advanced dementia. [60,71]

A recent extensive review of non-pharmacological interventions on agitation in people with dementia found evidence for improvement within order of probability: massage therapy, animal-assisted intervention, personally tailored interventions (based on individual interests) and pet robot intervention. [53]


People with advanced dementia commonly develop eating and swallowing problems. [25] The National Institute for Health and Care Excellence (NICE) has published evidence-based guidance for the safe management of swallowing difficulties in advanced dementia. [25] Assessment by a speech pathologist can be helpful. [14] Enteral feeding could be considered if dysphagia is transient but is not recommended in advanced dementia where dysphagia or anorexia is a symptom of the condition’s severity. [9,14,22,25]


People with advanced dementia are at increased risk of infections, commonly, urinary tract infections and pneumonia. [6,9] If a person with advanced dementia shows signs of an infection, a clinical assessment should be undertaken and the utility of treating infections decided on an individual basis. [14] Increased confusion and disorientation is a common sign of infection in someone living with dementia who may be unable to verbalise their discomfort/symptoms so a careful assessment is needed to distinguish these signs from delirium. [93,95] Antibiotics may be appropriate in treating infections with the goal of increasing comfort by alleviating the symptoms of infection. [14,22] If antibiotics are not given, comfort can adequately maintained with aggressive use of antipyretics, analgesics. [9]

Dementia and multimorbidity

Multimorbidity, that is, the presence of two or more chronic medical conditions, is common in Australia. People who have multimorbidity are found to experience reduced quality of life, polypharmacy, greater likelihood of uncoordinated and fragmented care, and greater use of services. [97] More can be read in Comorbidity and Multimorbidity.

Multimorbidity is particularly common for older people [96] and common chronic conditions in older Australians include arthritis, asthma, back pain and problems, cancer, cardiovascular disease, chronic obstructive pulmonary disease (COPD), diabetes, chronic kidney disease, mental and behavioural conditions, and osteoporosis. [96,97]

Most people with dementia have co-existing long-term health conditions and these additional conditions will also contribute to the person’s level of impairment. [22,94] In 2018, 95.1% of Australians with dementia had at least one additional long-term health condition. [94] Chronic or recurring pain or discomfort is common for people with dementia. [94] Sarcopenia is an under-recognised age-related syndrome common in dementia characterised by progressive loss of muscle mass and strength. It is associated with poor health outcomes such as cognitive decline, functional decline and depression. [57]

A recent systematic review found that moderate to severe cognitive impairment (including dementia) increased risks of mortality, was associated with prolonged institutional stays, and decreased function in persons with multiple chronic conditions. [36] This and the high prevalence of multimorbidity underline the importance of careful assessment and monitoring of people with dementia. Australian clinical practice guidelines for dementia recommend regular assessment of co-existing illnesses with a special mention of depression. [14] Assessing and managing symptoms can be challenging in this group and under treatment of symptoms is common in people with advanced dementia. [98]

Evidence gaps

More needs to be understood about:

  • the service utilisation and hospitalisations of people living with dementia
  • disease-specific outcomes of people with moderate-to-severe cognitive impairment and more than two other chronic conditions
  • optimal treatment of symptoms and providing comfort for people with dementia particularly in the advanced stages
  • the minimum or optimum amount of person-centred care training and supervision for aged care staff, and evaluation of person-centred care support to produce positive outcomes for the person living with dementia
  • whether advance care planning influences the type of care that patients actually receive
  • how opportunities for shared and supported decision-making are created, recognised and understood; and whether they could improve the quality of life for people living with dementia in aged care services
  • the factors that influence palliative care from the perspective of the person living with dementia
  • how cognitive interventions can help improve health outcomes for older people with cognitive impairment or dementia and a life-limiting condition(s).

Page updated 26 July 2022

  • References

  1. Dementia Australia. Dying Well: Improving palliative and end of life care  for people with dementia (259kb pdf). Canberra: Dementia Australia; 2019 October.
  2. Palliative Care Australia (PCA) and Dementia Australia. Palliative care and dementia. Policy statement. Canberra: PCA, Dementia Australia; 2018 May.
  3. Stokin GB, Krell-Roesch J, Petersen RC, Geda YE. Mild Neurocognitive Disorder: An Old Wine in a New Bottle. Harv Rev Psychiatry. 2015 Sep-Oct;23(5):368-76. doi: 10.1097/HRP.0000000000000084.
  4. Dementia Australia. Mild Cognitive Impairment [Internet]. 2022 [cited 2022 Feb 28].
  5. Sachdev PS, Mohan A, Taylor L, Jeste DV. DSM-5 and Mental Disorders in Older Individuals: An Overview. Harv Rev Psychiatry. 2015 Sep-Oct;23(5):320-8. doi: 10.1097/HRP.0000000000000090.
  6. Walsh SC, Murphy E, Devane D, Sampson EL, Connolly S, Carney P, et al. Palliative care interventions in advanced dementia. Cochrane Database Syst Rev. 2021 Sep 28;9(9):CD011513. doi: 10.1002/14651858.CD011513.pub3.
  7. CareSearch. Advanced Dementia [Internet]. Adelaide SA: CareSearch, Flinders University; [updated 2021 Aug 27; cited 2022 May 30].
  8. 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.
  9. Widera E, Bernacki R. Dementia. In: Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC, editors. Oxford Textbook of Palliative Medicine. 5th ed. Oxford: Oxford University Press; 2015.
  10. 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.
  11. World Health Organisation (WHO). Palliative care and dementia statement - Worldwide Hospice Palliative Care Alliance. Geneva, CH: WHO; 2014.
  12. Walsh SC, Murphy E, Devane D, Sampson EL, Connolly S, Carney P, et al. Palliative care interventions in advanced dementia. Cochrane Database Syst Rev. 2021 Sep 28;9(9):CD011513. doi: 10.1002/14651858.CD011513.pub3.
  13. Australian Bureau of Statistics (ABS). Causes of Death, Australia [Internet]. Canberra: ABS; 2021 [updated 2021 Sep 29; cited 2022 May 6].
  14. Guideline Adaptation Committee. Clinical Practice Guidelines and Principles of Care for People with Dementia (1.01MB pdf). Sydney: Guideline Adaptation Committee; 2016.
  15. Dementia Australia. Dementia Australia Annual Report 2017-2018 (3.73MB pdf). Canberra: Dementia Australia; 2018.
  16. Alzheimer’s Society. Risk factors for dementia (1.37MB pdf). London, UK: Alzheimer’s Society; 2021 Jun.
  17. Dementia Australia. Dementia Prevalence Data 2018-2058. Canberra: commissioned research undertaken by NATSEM, University of Canberra; 2018.
  18. Australian Institute of Health and Welfare (AIHW). Dementia [Internet]. Canberra: AIHW; 2020 [updated 2020 Jul 23; cited 2022 May 11].
  19. Hines S, McCrow J, Abbey J, Foottit J, Wilson J, Franklin S, et al. The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: a systematic review. JBI Libr Syst Rev. 2011;9(26):960-1131. doi: 10.11124/01938924-201109260-00001.
  20. Durepos P, Wickson-Griffiths A, Hazzan AA, Kaasalainen S, Vastis V, Battistella L, et al. Assessing Palliative Care Content in Dementia Care Guidelines: A Systematic Review. J Pain Symptom Manage. 2017 Apr;53(4):804-813. doi: 10.1016/j.jpainsymman.2016.10.368. Epub 2017 Jan 4.
  21. Hall S, Kolliakou A, Petkova H, Froggatt K, Higginson IJ. Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database Syst Rev. 2011 Mar 16;2011(3):CD007132. doi: 10.1002/14651858.CD007132.pub2.
  22. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014 Mar;28(3):197-209. doi: 10.1177/0269216313493685. Epub 2013 Jul 4.
  23. Lipnicki DM, Crawford J, Kochan NA, Trollor JN, Draper B, Reppermund S, et al. Risk Factors for Mild Cognitive Impairment, Dementia and Mortality: The Sydney Memory and Ageing Study. J Am Med Dir Assoc. 2017 May 1;18(5):388-395. doi: 10.1016/j.jamda.2016.10.014. Epub 2016 Dec 31.
  24. McInerney F, Doherty K, Bindoff A, Robinson A, Vickers J. How is palliative care understood in the context of dementia? Results from a massive open online course. Palliat Med. 2018 Mar;32(3):594-602. doi: 10.1177/0269216317743433. Epub 2017 Dec 13.
  25. The National Institute for Health and Care Excellence (NICE). Dementia: assessment, management and support for people living with dementia and their carers. Clinical guideline [NG97] [Internet]. London, UK: NICE; 2018 [updated 2018 Jun 20; cited 2022 May 27].
  26. Bryant J, Turon H, Waller A, Freund M, Mansfield E, Sanson-Fisher R. Effectiveness of interventions to increase participation in advance care planning for people with a diagnosis of dementia: A systematic review. Palliat Med. 2019 Mar;33(3):262-273. doi: 10.1177/0269216318801750. Epub 2018 Sep 27.
  27. Carpenter CR, Banerjee J, Keyes D, Eagles D, Schnitker L, Barbic D, et al. Accuracy of Dementia Screening Instruments in Emergency Medicine: A Diagnostic Meta-analysis. Acad Emerg Med. 2019 Feb;26(2):226-245. doi: 10.1111/acem.13573. Epub 2018 Nov 8.
  28. Cross AJ, Garip G, Sheffield D. The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research. Psychol Health. 2018 Nov;33(11):1321-1342. doi: 10.1080/08870446.2018.1496250. Epub 2018 Sep 27.
  29. Daly RL, Bunn F, Goodman C. Shared decision-making for people living with dementia in extended care settings: a systematic review. BMJ Open. 2018 Jun 9;8(6):e018977. doi: 10.1136/bmjopen-2017-018977.
  30. 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.
  31. Hall CL, Brooke J, Pendlebury ST, Jackson D. What is the Impact of Volunteers Providing Care and Support for People with Dementia in Acute Hospitals? A Systematic Review. Dementia (London). 2019 May;18(4):1410-1426. doi: 10.1177/1471301217713325. Epub 2017 Jun 6.
  32. 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 Dec;31(12):1731-1746. doi: 10.1017/S104161021900005X. Epub 2019 Feb 14.
  33. Morris L, Horne M, McEvoy P, Williamson T. Communication training interventions for family and professional carers of people living with dementia: a systematic review of effectiveness, acceptability and conceptual basis. Aging Ment Health. 2018 Jul;22(7):863-880. doi: 10.1080/13607863.2017.1399343. Epub 2017 Nov 10. Erratum in: Aging Ment Health. 2018 Jul;22(7):920.
  34. Nguyen H, Terry D, Phan H, Vickers J, McInerney F. Communication training and its effects on carer and care-receiver outcomes in dementia settings: A systematic review. J Clin Nurs. 2019 Apr;28(7-8):1050-1069. doi: 10.1111/jocn.14697. Epub 2018 Nov 20.
  35. Schofield P. The Assessment of Pain in Older People: UK National Guidelines. Age Ageing. 2018 Mar 1;47(suppl_1):i1-i22. doi: 10.1093/ageing/afx192.
  36. Snowden MB, Steinman LE, Bryant LL, Cherrier MM, Greenlund KJ, Leith KH, et al. Dementia and co-occurring chronic conditions: a systematic literature review to identify what is known and where are the gaps in the evidence? Int J Geriatr Psychiatry. 2017 Apr;32(4):357-371. doi: 10.1002/gps.4652. Epub 2017 Feb 1.
  37. Tapp D, Chenacher S, Gérard NPA, Bérubé-Mercier P, Gelinas C, Douville F, et al. Observational Pain Assessment Instruments for Use With Nonverbal Patients at the End-of-life: A Systematic Review. J Palliat Care. 2019 Oct;34(4):255-266. doi: 10.1177/0825859718816073. Epub 2019 Jan 13.
  38. Teahan Á, Lafferty A, McAuliffe E, Phelan A, O'Sullivan L, O'Shea D, et al. Resilience in family caregiving for people with dementia: A systematic review. Int J Geriatr Psychiatry. 2018 Dec;33(12):1582-1595. doi: 10.1002/gps.4972. Epub 2018 Sep 19.
  39. Tilburgs B, Vernooij-Dassen M, Koopmans R, van Gennip H, Engels Y, Perry M. Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review. PLoS One. 2018 Jun 20;13(6):e0198535. doi: 10.1371/journal.pone.0198535.
  40. van der Steen JT, van Soest-Poortvliet MC, Hallie-Heierman M, Onwuteaka-Philipsen BD, Deliens L, de Boer ME, et al. Factors associated with initiation of advance care planning in dementia: a systematic review. J Alzheimers Dis. 2014;40(3):743-57. doi: 10.3233/JAD-131967.
  41. Karr JE, Graham RB, Hofer SM, Muniz-Terrera G. When does cognitive decline begin? A systematic review of change point studies on accelerated decline in cognitive and neurological outcomes preceding mild cognitive impairment, dementia, and death. Psychol Aging. 2018 Mar;33(2):195-218. doi: 10.1037/pag0000236.
  42. Machiels M, Metzelthin SF, Hamers JP, Zwakhalen SM. Interventions to improve communication between people with dementia and nursing staff during daily nursing care: A systematic review. Int J Nurs Stud. 2017 Jan;66:37-46. doi: 10.1016/j.ijnurstu.2016.11.017. Epub 2016 Nov 30.
  43. 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 Sep;109:103640. doi: 10.1016/j.ijnurstu.2020.103640. Epub 2020 May 16.
  44. Barbosa A, Lord K, Blighe A, Mountain G. Dementia Care Mapping in long-term care settings: a systematic review of the evidence. Int Psychogeriatr. 2017 Oct;29(10):1609-1618. doi: 10.1017/S1041610217001028. Epub 2017 Jun 20.
  45. Teng C, Loy CT, Sellars M, Pond D, Latt MD, Waite LM, et al. Making Decisions About Long-Term Institutional Care Placement Among People With Dementia and Their Caregivers: Systematic Review of Qualitative Studies. Gerontologist. 2020 May 15;60(4):e329-e346. doi: 10.1093/geront/gnz046.
  46. Tsai YI, Browne G, Inder KJ. The effectiveness of interventions to improve pain assessment and management in people living with dementia: A systematic review and meta-analyses. J Adv Nurs. 2021 Mar;77(3):1127-1140. doi: 10.1111/jan.14660. Epub 2020 Nov 22.
  47. Watt JA, Goodarzi Z, Veroniki AA, Nincic V, Khan PA, Ghassemi M, et al. Comparative Efficacy of Interventions for Aggressive and Agitated Behaviors in Dementia: A Systematic Review and Network Meta-analysis. Ann Intern Med. 2019 Nov 5;171(9):633-642. doi: 10.7326/M19-0993. Epub 2019 Oct 15.
  48. McAnee G, Norwood K, Rosato M, Leavey G. Assessment of pain in people living with dementia at the end of life: a systematic review. Int J Palliat Nurs. 2021 Apr 2;27(2):72-85. doi: 10.12968/ijpn.2021.27.2.72.
  49. Mo L, Geng Y, Chang YK, Philip J, Collins A, Hui D. Referral criteria to specialist palliative care for patients with dementia: A systematic review. J Am Geriatr Soc. 2021 Jun;69(6):1659-1669. doi: 10.1111/jgs.17070. Epub 2021 Mar 2.
  50. Parker KJ, Hickman LD, Phillips JL, Ferguson C. Interventions to optimise transitional care coordination for older people living with dementia and concomitant multimorbidity and their caregivers: A systematic review. Contemp Nurse. 2020 Oct-Dec;56(5-6):505-533. doi: 10.1080/10376178.2020.1812416. Epub 2020 Sep 10.
  51. Hui Z, Yang C, Lee DTF. Interventions for Family Members After Long-Term Care Placement of a Relative With Dementia: A Systematic Review and Meta-Analysis. Res Gerontol Nurs. 2021 Jan 1;14(1):43-52. doi: 10.3928/19404921-20200918-02. Epub 2020 Sep 23.
  52. Browne B, Kupeli N, Moore KJ, Sampson EL, Davies N. Defining end of life in dementia: A systematic review. Palliat Med. 2021 Dec;35(10):1733-1746. doi: 10.1177/02692163211025457. Epub 2021 Jun 17.
  53. Leng M, Zhao Y, Wang Z. Comparative efficacy of non-pharmacological interventions on agitation in people with dementia: A systematic review and Bayesian network meta-analysis. Int J Nurs Stud. 2020 Feb;102:103489. doi: 10.1016/j.ijnurstu.2019.103489. Epub 2019 Nov 25.
  54. Luker JA, Worley A, Stanley M, Uy J, Watt AM, Hillier SL. The evidence for services to avoid or delay residential aged care admission: a systematic review. BMC Geriatr. 2019 Aug 8;19(1):217. doi: 10.1186/s12877-019-1210-3.
  55. Esmail S, Concannon B. Approaches to Determine and Manage Sexual Consent Abilities for People With Cognitive Disabilities: Systematic Review. Interact J Med Res. 2022 Feb 4;11(1):e28137. doi: 10.2196/28137.
  56. Miller LM, Whitlatch CJ, Lyons KS. Shared decision-making in dementia: A review of patient and family carer involvement. Dementia (London). 2016 Sep;15(5):1141-57. doi: 10.1177/1471301214555542. Epub 2014 Nov 3.
  57. Pacifico J, Geerlings MAJ, Reijnierse EM, Phassouliotis C, Lim WK, Maier AB. Prevalence of sarcopenia as a comorbid disease: A systematic review and meta-analysis. Exp Gerontol. 2020 Mar;131:110801. doi: 10.1016/j.exger.2019.110801. Epub 2019 Dec 28.
  58. Caspar S, Davis ED, Douziech A, Scott DR. Nonpharmacological Management of Behavioral and Psychological Symptoms of Dementia: What Works, in What Circumstances, and Why? Innov Aging. 2018 Mar 20;2(1):igy001. doi: 10.1093/geroni/igy001.
  59. Hurst A, Coyne E, Kellett U, Needham J. Volunteers motivations and involvement in dementia care in hospitals, aged care and resident homes: An integrative review. Geriatr Nurs. 2019 Sep-Oct;40(5):478-486. doi: 10.1016/j.gerinurse.2019.03.010. Epub 2019 Mar 25.
  60. Asmer MS, Kirkham J, Newton H, Ismail Z, Elbayoumi H, Leung RH, et al. Meta-Analysis of the Prevalence of Major Depressive Disorder Among Older Adults With Dementia. J Clin Psychiatry. 2018 Jul 31;79(5):17r11772. doi: 10.4088/JCP.17r11772.
  61. Parkinson M, Carr SM, Rushmer R, Abley C. Investigating what works to support family carers of people with dementia: a rapid realist review. J Public Health (Oxf). 2017 Dec 1;39(4):e290-e301. doi: 10.1093/pubmed/fdw100.
  62. Nasreddine Z. MoCA Cognitive Assessment [Internet]. Quebec, CA: MoCA Test Inc; 2019. [cited 2022 Mar 1].
  63. Australian Institute of Health and Welfare (AIHW). Hospital care for people with dementia 2016-17. Canberra: AIHW; 2019.
  64. Dementia Australia. Types of dementia [Internet]. Canberra: Dementia Australia; 2022 [cited 2022 Feb 28].
  65. Cahill S. WHO's global action plan on the public health response to dementia: some challenges and opportunities. Aging Ment Health. 2020 Feb;24(2):197-199. doi: 10.1080/13607863.2018.1544213. Epub 2019 Jan 2.
  66. Larner AJ. Cognitive screening instruments for the diagnosis of mild cognitive impairment. Prog. Neurol. Psychiatry. 2016 Mar-Apr;20(2):21-26.
  67. Zhuang L, Yang Y, Gao J. Cognitive assessment tools for mild cognitive impairment screening. J Neurol. 2021 May;268(5):1615-1622. doi: 10.1007/s00415-019-09506-7. Epub 2019 Aug 14.
  68. Cognitive Decline Partnership Centre, HammondCare. Future planning and advance care planning: Why it needs to be different for people with dementia and other forms of cognitive decline (3.53MB pdf). Sydney: Cognitive Decline Partnership Centre; 2016 Jan.
  69. Parpa E, Tsilika E, Gennimata V, Mystakidou K. Elderly cancer patients’ psychopathology: A systematic review: Aging and mental health. Arch Gerontol Geriatr. 2015 Jan-Feb;60(1):9-15.
  70. Brodaty H, Aerts L, Crawford JD, Heffernan M, Kochan NA, Reppermund S, et al. Operationalizing the Diagnostic Criteria for Mild Cognitive Impairment: The Salience of Objective Measures in Predicting Incident Dementia. Am J Geriatr Psychiatry. 2017 May;25(5):485-497. doi: 10.1016/j.jagp.2016.12.012. Epub 2016 Dec 23.
  71. Bartley MM, Suarez L, Shafi RMA, Baruth JM, Benarroch AJM, Lapid MI. Dementia Care at End of Life: Current Approaches. Curr Psychiatry Rep. 2018 Jun 23;20(7):50. doi: 10.1007/s11920-018-0915-x.
  72. Griffiths AW, Robinson OC, Shoesmith E, Kelley R, Surr CA. Staff experiences of implementing Dementia Care Mapping to improve the quality of dementia care in care homes: a qualitative process evaluation. BMC Health Serv Res. 2021 Feb 12;21(1):138. doi: 10.1186/s12913-021-06152-6.
  73. Meads DM, Martin A, Griffiths A, Kelley R, Creese B, Robinson L, et al. Cost-Effectiveness of Dementia Care Mapping in Care-Home Settings: Evaluation of a Randomised Controlled Trial. Appl Health Econ Health Policy. 2020 Apr;18(2):237-247. doi: 10.1007/s40258-019-00531-1.
  74. Surr CA, Griffiths AW, Kelley R, Holloway I, Walwyn REA, Martin A, et al. The Implementation of Dementia Care Mapping in a Randomized Controlled Trial in Long-Term Care: Results of a Process Evaluation. Am J Alzheimers Dis Other Demen. 2019 Sep;34(6):390-398. doi: 10.1177/1533317519845725. Epub 2019 May 5.
  75. Surr CA, Holloway I, Walwyn RE, Griffiths AW, Meads D, Kelley R, et al. Dementia Care Mapping™ to reduce agitation in care home residents with dementia: the EPIC cluster RCT. Health Technol Assess. 2020 Mar;24(16):1-172. doi: 10.3310/hta24160.
  76. Surr CA, Holloway I, Walwyn REA, Griffiths AW, Meads D, Martin A, et al. Effectiveness of Dementia Care Mapping™ to reduce agitation in care home residents with dementia: an open-cohort cluster randomised controlled trial. Aging Ment Health. 2021 Aug;25(8):1410-1423. doi: 10.1080/13607863.2020.1745144. Epub 2020 Apr 13.
  77. Tarzia L, Fetherstonhaugh D, Bauer M. Dementia, sexuality and consent in residential aged care facilities. J Med Ethics. 2012 Oct;38(10):609-13. doi: 10.1136/medethics-2011-100453. Epub 2012 Jun 25.
  78. D’cruz M, Andrade C, Rao TSS. The Expression of Intimacy and Sexuality in Persons With Dementia. J Psychosexual Health. 2020 Jul;2(3-4):215-23. doi:10.1177/2631831820972859.
  79. Sinclair C, Field S, Blake M. Supported decision-making in aged care: A policy development guideline for aged care providers in Australia (1.42MB pdf). 2nd ed. Sydney Cognitive Decline Partnership Centre; 2018.
  80. Dementia Australia. Use of chemical restraint (restrictive practices) in residential aged care (347kb pdf). Canberra: Dementia Australia; 2021.
  81. Age Care Quality and Safety Commission. Minimising the use of restrictive practices [Internet]. Canberra: Commonwealth of Australia; 2021. [updated 2021 Oct 12; cited 2022 May 2].
  82. Palliative care Outcome Scale (POS). Integrated POS (IPOS) for Dementia and Translations [Internet]. London: Cicely Saunders Institute; 2012 [cited 2022 May 27].
  83. Babicova I, Cross A, Forman D, Hughes J, Hoti K. Evaluation of the Psychometric Properties of PainChek® in UK Aged Care Residents with advanced dementia. BMC Geriatr. 2021 May 28;21(1):337. doi: 10.1186/s12877-021-02280-0.
  84. Hoti K, Atee M, Hughes JD. Clinimetric properties of the electronic Pain Assessment Tool (ePAT) for aged-care residents with moderate to severe dementia. J Pain Res. 2018 Jun 1;11:1037-1044. doi: 10.2147/JPR.S158793.
  85. Ellis-Smith C, Higginson IJ, Daveson BA, Henson LA, Evans CJ; BuildCARE. How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem. PLoS One. 2018 Jul 11;13(7):e0200240. doi: 10.1371/journal.pone.0200240.
  86. Hui D, De La Cruz M, Mori M, Parsons HA, Kwon JH, Torres-Vigil I, et al. Concepts and definitions for "supportive care," "best supportive care," "palliative care," and "hospice care" in the published literature, dictionaries, and textbooks. Support Care Cancer. 2013 Mar;21(3):659-85. doi: 10.1007/s00520-012-1564-y. Epub 2012 Aug 31.
  87. World Health Organisation (WHO). Palliative care [Internet]. Geneva, CH: WHO; 2020 [updated 2020 Aug 5; cited 2022 May 5].
  88. Australian Government Department of Health and Aged Care. Where is palliative care provided? [Internet]. Canberra: Australian Government Department of Health and Aged Care; 2022. [updated 2022 July 25; cited 2022 July 26].
  89. Royal Australian College of General Practitioners (RACGP). Behavioural and psychological symptoms of dementia. 2019. In: RACGP aged care clinical guide (Silver Book) - Part A [Internet]. Melbourne: RACGP; 2019 [updated 2019 Oct 30; cited 2022 May 6].
  90. Parliament of Australia. International aged care: a quick guide [Internet]. Canberra: Commonwealth of Australia; 2017 [updated 2017 Jun 28; cited 2022 May 5].
  91. Australian Institute of Health and Welfare (AIHW). International health data comparisons, 2020 [Internet]. Canberra: AIHW; 2020. [updated 2020 Nov 13; cited 2022 May 5].
  92. Cunningham C, Macfarlane S, Brodaty H. Language paradigms when behaviour changes with dementia: #BanBPSD. Int J Geriatr Psychiatry. 2019 Aug;34(8):1109-1113. doi: 10.1002/gps.5122. Epub 2019 May 27.
  93. Royal Australian College of General Practitioners (RACGP). Dementia. 2019. In: RACGP aged care clinical guide (Silver Book) - Part A [Internet]. Melbourne: RACGP. 2019 [updated 2019 Oct 30; cited 2022 May 6].
  94. Australian Bureau of Statistics (ABS). Dementia in Australia [Internet]. Canberra: ABS; 2020 [updated 2020 Jul 31; cited 2022 May 6].
  95. Royal Australian College of General Practitioners (RACGP). Infection and sepsis. 2019. In: RACGP aged care clinical guide (Silver Book) - Part A [Internet]. Melbourne: RACGP. 2019 [updated 2019 Oct 30; cited 2022 May 6].
  96. Australian Institute of Health Welfare (AIHW). Chronic conditions and multimorbidity [Internet]. Canberra: AIHW; 2020 Sep 23. [cited 2022 May 6]. 
  97. Royal Australian College of General Practitioners (RACGP). Multimorbidity. 2019. In: RACGP aged care clinical guide (Silver Book) - Part A [Internet]. Melbourne: RACGP. 2019 [updated 2019 Oct 30; cited 2022 May 6].
  98. van der Steen JT. Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis. 2010;22(1):37-55. doi: 10.3233/JAD-2010-100744.
  99. Fick DM, Agostini JV, Inouye SK. Delirium Superimposed on Dementia: A Systematic Review. J Am Geriatr Soc. 2002 Oct;50(10):1723-32. doi: 10.1046/j.1532-5415.2002.50468.x.
  100. Skelton L, Guo P. Evaluating the effects of the pharmacological and nonpharmacological interventions to manage delirium symptoms in palliative care patients: systematic review. Curr Opin Support Palliat Care. 2019 Dec;13(4):384-391. doi: 10.1097/SPC.0000000000000458.