Respite Care - Synthesis
X
GO

Respite Care - Synthesis

Introduction 

Caring for someone can be a valuable and rewarding experience but it can also be stressful, both mentally and physically. [1-3] Respite care is planned or emergency care which provides a temporary break both for a carer and the person receiving care. [1-9] The type and nature of respite services varies according to the setting or location, its duration and timing, who provides the care and the activities or type of care involved. [2,5] Respite is a key component of family support and home-based and community-based long-term services and supports. [2,4,5]

Respite care emerged in response to the need of families and carers of a people with disability, long-term illness, or frailty with old age for a break from their caring responsibilities. [5] Initially, the focus was on outcomes for carers but over recent decades, the focus has extended to the person receiving care. [5] Recently, there has been a change in terminology in the UK from respite to ‘short breaks’ as this is thought to lessen the emphasis on carer burden and dependency. [5] Respite care in Australia seeks to deliver outcomes for both carers and people receiving care. [5]

Quality Statement

Much of the literature addresses respite care for adults in general. [4-6,10,11] Few papers are specific to respite care for older people receiving palliative care and their carers. Three systematic reviews focus on respite care for adults receiving palliative care, [12-14] six papers focus on respite care for people with dementia. [2,3,8,9,15-17] and one focussed on older male spousal carers. [18] The papers were of low to high quality. One set of guidelines from USA were retrieved. [4] Other literature was sought to give context to the topic. [1,5,6,17,19-22]

Evidence Synthesis

There is increasing evidence to suggest that the majority of people would prefer to die in their own homes if they were assured of receiving the high-quality care and the support they need. However, 54% of Australians die in hospitals and 32% in residential care. Only about 14% of people die at home. [21,22]

Even when death occurs in hospital, 90% of people spend most of their final year at home or in the nursing homes where they live. [12] Fulfilling a person’s desire to be cared for and/or to die at home often requires sophisticated and extensive assistance from the family and unpaid/paid carers. [2,12] Respite care can help by providing a temporary break both for a carer and the person receiving care.

Respite - uptake, benefits

Respite care appears to be a sought-after service [9] in the care of people with dementia yet respite care suited to a person’s needs may not always be available or affordable. [2,9] Local studies suggest a low uptake of respite in Australia for people receiving palliative care, [20] for older adults [19] and for people with dementia. [2,3,8,17] A systematic review by Maayan et al. [2] cites a paper which found that slightly over half (58%) of carers of people living with dementia use respite care. Various informational, attitudinal and service-related barriers to the uptake of respite care are described. [3,8,16,17,19,20]

Research suggests that different carers and participants value and need different types of respite services in different settings. [2,5,19] Attention to the needs of the carer and the person receiving care is important in shaping respite care. [2,5,9,12,15,19,20] Carers may prefer to use informal respite care (assistance offered by family and friends) and hesitate to use formal respite care (in-home care, centre-based day care or residential settings) as they may feel guilty or anxious about the quality of care or the disruption of routine. [2,5,9,19] Services may be difficult to find or seem costly. [16,19,20]

In-home respite, provided in the home of the person, can be in several forms and is most often short-term. [5] It can be a therapeutic visit from a health care provider, a day or a night sitting service provided by a careworker, nursing assistant or a befriending service. [5]

The costs and outcomes of respite are difficult to identify, measure and evaluate as there are many factors and variables. The outcomes can be subjective and can vary along the course of an illness and in relation to the setting. [5]

Respite for older Australians

Historically, a number of State and Commonwealth programs have provided respite services for older Australians, Australians with a disability, and carers. [5] Recent disability and aged care reforms have involved a shift to consumer-directed care (CDC) with a move to meet the needs of both the participant (consumer) and the carer. [5]

Since 2015, Commonwealth Home Support Programme (CHSP) (Department of Health) supports planned respite for older people as part of services to support older people who need assistance to keep living independently at home and in their community. [1,5,7] The CHSP offers a mix between block funding and a person-centred model. It focuses on the participant and the care relationship, not on the carer, even though it continues to fund some respite for carers of frail older people. [5]

Emergency respite is coordinated by Commonwealth Respite and Carelink Centre (Department of Social Services). [1,7] Consumer-directed respite care (CDRC) is also coordinated by Commonwealth Respite and Carelink Centre. [1] It provides packages of respite services, tailored to a personal situation and is targeted to the person’s needs.

Respite for people receiving palliative care

In supporting people at end-of-life, careworkers can provide respite care to allow short breaks for carers during the day or, in the provision of overnight support, to enable family members to have a good night’s sleep. As family carers frequently experience sleep problems, overnight support is an important component of end-of-life care. [12] Herber et al. [12] acknowledged the important role of careworkers in a wide range of different tasks required to fulfil the patients desire to be cared for and to die at home and noted similarities in the tasks and roles in the UK and USA. They identified areas that careworkers could be more strongly supported with training, role definition and peer-support. [12]

Palliative day care services (PDS) provide holistic, individualised palliative care to people diagnosed with advanced life-limiting illnesses. [13] These can be either generalist palliative day care or specialist palliative day care. [13] Although, not specifically referred to as respite, they do provide support and a break for the person with a life-limiting illness and their carers.

Stevens et al. [13] recognised that PDS is liked by attendees but were unable to report whether it improved their wellbeing. They called for research to be conducted to particularly investigate the role of PDS in psychological, spiritual or social wellbeing of people receiving palliative care. In a review of the psychosocial (psychological, social and spiritual) aspects of Specialist Palliative Day Care (SPDC), Bradley et al. [14] reported that SPDC can reduce isolation, increase social support, encourage communication and provide activities. [14] They noted that the change of scenery and the removal from an environment in which they were increasingly dependent and restricted was important to participants. [14] This would often free them mentally and restore a sense of self. [14]

Respite for people with dementia

Remaining in the community is generally preferable for people with dementia as this may help them to remain more socially connected, have better physical functions and experience higher levels of quality of life. [2] Respite care for people with dementia living in the community can be over an extended time and may need to be reviewed regularly as communication and behavioural changes can require a change in care or support. [2] In-home respite care seems to be the appreciated by carers [2,3,9] as it does not require carers to prepare and transport the person with dementia [2] and causes minimal or no disruption to home patterns and routines. [2,3] It is also better suited to people with dementia who are known for their difficulty in adapting to new physical environments and persons. [3,9]

The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. [8] There is evidence of high levels of satisfaction with respite use among carers of people with dementia who use respite, and that respite services may support carers of people with dementia to continue in their caring situation for longer. [8] Convenient, reliable, and suitable respite (for carer or care recipient) may not always be available or affordable. [2,3,8,9] The actual usage of formal respite services by carers of people living with dementia has often been shown to be relatively low. [2,3,8,17]

Both Neville et al. [3] and Phillipson et al. [8] noted in the literature that the social stigma associated with dementia and respite care may prevent some carers to use respite care. Feelings of guilt, failure or abandoning the person with dementia may delay carers from using respite. This was found to be the case in a review of older male spousal caregivers, who perceived use of respite services as signalling an inability to cope and failure to care or provide for their wives. [18] Apprehension of the person with dementia becoming angry, resentful or distressed from respite, can also hold back carers from using respite. [3,8] Reluctance to use respite services is found with female and male carers of people with dementia and may be influenced by the type of respite care and relationship status, with spousal carers less likely to use respite. [8,16,18] Neville et al. [3] observed that some carers may see respite as inevitably leading to full-time RACF placement of the person with dementia and therefore hold back on using it. Yet, if carers see respite services as high-quality, trustworthy and benefitting themselves and the person with dementia, they are more likely to accept and use the service. [3,8] Day and in-home respite services specific to cultural and language groups are often used when they match the background of the person with dementia. [8]

Neville et al. [3] noted that carers often prefer respite services that have social or recreational activities that are age-appropriate and are enjoyed by the person with dementia. Carers who use respite services appreciate contact with familiar staff as that can help build strong rapport. [3] The optimal timing (duration, frequency) of respite was not clearly understood as it depended on many variables. [3]

With regard to formal respite services, carers of people living with dementia value an empathetic and respectful approach by staff and the opportunity to receive education and information. [3] Small-scale research cited by Neville et al. [3] suggested that a carer may have most benefit from respite when they are satisfied with what they are able to do during respite. [11]

Day care is the most commonly investigated type of community respite care that can provide positive outcomes for both carers and care recipients. [9] Vandepitte et al. [9] and Tretteteig et al. [15] report that day care can assist carers to manage in their role as carer, particularly if day care also provides a support service for the carer (information, education, skill development). [15]

Vandepitte et al. [9] observed that the use of day care may be associated with subsequent placement in residential care. These authors postulate that this may be because carers may start using day care after an extended period of caring with little or no outside support and that the amount of day care provide is insufficient to affect carer burden. [9]

Vandepitte et al. [9] and Tretteteig et al. [15] reported that day care can help reduce behavioural problems in people with dementia, and possibly improved their sleep quality for carers. [9] Tretteteig et al. [15] pointed out that the experience of day care respite depended on the quality of treatment at the day care centre and how the service met the carer’s needs for flexibility, support, information, and responsibility sharing.

In a Cochrane review of respite for carers of people with dementia by Maayan et al. [2], only four studies were of sufficient quality to be included. Three studies investigated in-home interventions (companionship and care by professionals or trained volunteers). The fourth study reported access to three types of respite care, in-home respite, day care or institutional respite. They were unable to demonstrate any benefits or adverse effects from the use of respite care for people with dementia or their carers and suggested that the provision of respite care at cost or free-of-charge may have confounded some of the results. [2] Consistent with Vandepitte et al. [9] and Tretteteig et al. [15], Maayan et al. identified a need for well-designed trials to build the evidence base. [2] Vandepitte et al. [9] called for more qualitative research and research into the effectiveness and cost-effectiveness of respite people with dementia and their carers.

Vandepitte et al. [9] found that temporary residential admission as respite has mixed effects with unexpected adverse effects on both carers and care recipients. Carers’ sleep quality improved during the admission of the care recipient, but burden and distress increased after the respite period. In contrast to the carers, care recipients’ sleep quality actually decreased during the respite period [9] which supports a common preference for in-home respite for people with dementia.

Video respite is an in-home resource designed initially for people with Alzheimer’s disease and their carers. It uses specially designed interactive videos with which a person can engage for a short time and thus provide a short break for the carer or family members. [5]

Evidence Gaps

  • Respite care (needs, use, effectiveness, benefits) for older Australians receiving palliative care is poorly understood.
  • More research is needed to understand the low uptake of respite by carers who may benefit from receiving this support.
  • Future research could provide more detail as to what type of respite is effective and for whom. Both quantitative and qualitative findings would be informative.
  • More research is needed to understand the benefits of respite care for people living with dementia and their carers.
  • The perspectives and experiences of care recipients needs to be better understood.


Last updated 16 June 2021

  • References

  1. Carer Gateway. What is respite care? [Internet]. 2017 [updated 2017 Feb, cited 2017 Nov 24].
  2. Maayan N, Soares-Weiser K, Lee H. Respite care for people with dementia and their carers. Cochrane Database Syst Rev. 2014 Jan 16;(1):CD004396. doi: 10.1002/14651858.CD004396.pub3.
  3. Neville C, Beattie E, Fielding E, MacAndrew M. Literature review: use of respite by carers of people with dementia. Health Soc Care Community. 2015;23(1):51-63. doi: 10.1111/hsc.12095.
  4. Edgar M, Uhl M. National Respite Guidelines: Guiding Principles for Respite Models and Services (1.30MB pdf). Annandale (VA): ARCH National Respite Network and Resource Center; 2011.
  5. Hamilton M, Giuntoli G, Johnson K, Kayess R, Fisher KR. Transitioning Australian Respite (SPRC Report 04/16). Sydney: Social Policy Research Centre, UNSW; 2016.
  6. Department of Health and Ageing. National Respite for Carers Program - Policy Guidelines. Canberra: Department of Health and Ageing; 2012.
  7. My Aged Care. Respite care [Internet]. 2019 [cited 2019 July 2].
  8. Phillipson L, Jones SC, Magee C. A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice. 2014 Jan;22(1):1-12. doi: 10.1111/hsc.12036. Epub 2013 Mar 27.
  9. Vandepitte S, Van Den Noortgate N, Putman K, Verhaeghe S, Verdonck C, Annemans L. Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review. Int J Geriatr Psychiatry. 2016 Dec;31(12):1277-1288. doi: 10.1002/gps.4504. Epub 2016 Jun 1.
  10. Thomas S, Dalton J, Harden M, Eastwood A, Parker G. Updated meta-review of evidence on support for carers. Southampton (UK): NIHR Journals Library; 2017.
  11. Lund DA, Utz R, Caserta MS, Wright SD. Examining what caregivers do during respite time to make respite more effective. J Appl Gerontol. 2009 Feb;28(1):109-31.
  12. Herber OR, Johnston BM. The role of healthcare support workers in providing palliative and end-of-life care in the community: a systematic literature review. Health Soc Care Community. 2013 May;21(3):225-35. doi: 10.1111/j.1365-2524.2012.01092.x. Epub 2012 Sep 13.
  13. Stevens E, Martin CR, White CA. The outcomes of palliative care day services: a systematic review. Palliat Med. 2011 Mar;25(2):153-69. doi: 10.1177/0269216310381796. Epub 2010 Oct 7.
  14. Bradley SE, Frizelle D, Johnson M. Patients' psychosocial experiences of attending Specialist Palliative Day Care: a systematic review. Palliat Med. 2011 Apr;25(3):210-28. doi: 10.1177/0269216310389222. Epub 2011 Jan 12.
  15. Tretteteig S, Vatne S, Rokstad AM. The influence of day care centres for people with dementia on family caregivers: an integrative review of the literature. Aging Ment Health. 2016;20(5):450-62. doi: 10.1080/13607863.2015.1023765. Epub 2015 Mar 27.
  16. Leocadie MC, Roy MH, Rothan-Tondeur M. Barriers and enablers in the use of respite interventions by caregivers of people with dementia: an integrative review. Arch Public Health. 2018 Nov 22;76:72. doi: 10.1186/s13690-018-0316-y.
  17. University of Wollongong. The development and trial of an innovative community based Respite Action Intervention for carers of people with dementia [Internet]. 2017 [updated 2017 Mar 22, cited 2017 Nov 24].
  18. Fee A, McIlfatrick S, Ryan A. Examining the support needs of older male spousal caregivers of people with a long-term condition: A systematic review of the literature. Int J Older People Nurs. 2020 Sep;15(3):e12318. doi: 10.1111/opn.12318. Epub 2020 May 4.
  19. Moyle W, Parker D, Bramble M. Care of Older Adults: A Strengths-based Approach. Melbourne, Australia: Cambridge University Press; 2014.
  20. State of Victoria. Supporting caregivers of palliative care patients - Respite and other caregiver interventions and evidence of their efficacy (975kb pdf). Melbourne: Victorian Government; 2015.
  21. Swerissen H, Duckett, S. Dying Well. Carlton (VIC): Grattan Institute; 2014.
  22. Broad JB, Gott M, Kim H, Boyd M, Chen H, Connolly MJ. Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. Int J Public Health. 2013 Apr;58(2):257-67. doi: 10.1007/s00038-012-0394-5. Epub 2012 Aug 15.