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Respite Care

Key Messages

  • Fulfilling a person’s wish to be cared for at home and/or to die at home often requires sophisticated and extensive assistance from family, unpaid and paid carers. [1,2]
  • Respite care is planned or unplanned care which provides a temporary break and benefit for both a carer and the person for whom they care. [2-10]
  • Attention to the needs of the carer and the person receiving care is important in shaping respite care. [1,3,7-9,11]
  • There are many reasons why carers may rely on the help of family or friends and hesitate to use formal respite care use. [2,3,7-9]
  • Evidence indicates that carers are satisfied with respite care and that it helps them to continue in their role [7-9] yet how this best works is not well understood.
  • The costs and benefits of respite are difficult to identify, measure and evaluate because they are diffuse, subjective and changing. [3,8]

Background

Caring for someone who is dying can be a valuable and rewarding experience but it can also be stressful both mentally and physically. [2,6,8] Respite care is planned or emergency care which provides a temporary break both for a carer and the person receiving care. [2-4,8-10] The type and nature of respite services varies according to the setting or location of the respite (e.g. in-home or out-of-home), its duration and timing (e.g. flexible, regular, emergency), who provides the care (e.g. informally by family, friends or volunteers, or formally through a respite service) and the activities or type of care involved. [2,3] Respite is a key component of family support and home- and community-based long-term services and supports. [2,3,10] 

In Australia, 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. [3,5,6] Emergency respite is coordinated by Commonwealth Respite and Carelink Centre (Department of Social Services). [5,6] The shift to a consumer-directed care (CDC) model in aged care services poses challenges to the planning and delivery of services, including respite. [3] Consumer-directed respite care (CDRC) is also coordinated by Commonwealth Respite and Carelink Centre. [6] It provides packages of respite services, tailored to a personal situation and is targeted to the person’s needs.

Evidence Summary

Surveys consistently show that 60-70% of Australians would prefer to die at home yet only about 14% die at home. [12,13] To fulfil a person’s wish to be cared for at home and/or to die at home often requires sophisticated and extensive assistance from family, unpaid/paid carers and support services. [1,2] Respite care is important in sustaining a care relationship. [3,10]

Respite care emerged in response to the need for a break from caring responsibilities of families and carers of people with disability, long-term illness, or frailty with old age. [3] The time and space during respite can provide the opportunity to rest or to undertake activities that contribute to emotional, social, physical and material health and wellbeing. It can also contribute to the ongoing health and wellbeing of the care relationship. [3,10] Respite care in Australia seeks to assist both carers and people requiring care [3] and should be beneficial for the person receiving care, as well as safe. [2,3,10]

Respite has been noted as one of the most frequently expressed needs of carers. [7,8,10] however, convenient, reliable and suitable (for carer or care recipient) may not always be available or affordable. [2,7-9]

In supporting people at end-of-life, the role of careworkers providing respite care to enable families to have a good night’s sleep is recognised. [1] Day care centres provide respite care for people receiving palliative care [11,14-16] and people living with dementia. [2,7,8,11] Adults attending palliative day care value the person-centred approach that reduces isolation, increases social support, encourages communication and provides activities but its impact on their wellbeing is not known. [14,16] Some respite specific to palliative care may include reassessment of the care plan or support for carers as well as the opportunity for a break. [7,8]

Attention to the needs of the carer and the person receiving care is important in shaping respite care and research suggests that carers and care recipients value and need different types of respite services in different settings. [1,3,7,9,11] Carers may prefer to use assistance offered by family and friends and hesitate to use formal respite care as they may feel guilty or anxious about the quality of the care or the disruption of routine. [2,3,7-9] The actual usage of formal respite services by carers of people living with dementia has often been shown to be relatively low. [8,9]

Feelings of guilt, failure or abandoning the person with dementia, and apprehension of the person with dementia becoming angry, resentful or distressed from respite, can hold back carers from using respite. [8,9] Particularly spousal carers and female carers seem to not use respite care. [9] 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. [8,9] 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. [9]

Day care is a commonly investigated type of respite for people living with dementia and their carers [7] and its benefits for carers depend on the quality of services, and how the service meets the carer’s needs for flexibility, support, information, and responsibility sharing. [8,9,11] The benefits of respite care for people living with dementia and their carers is mixed. [7,8,15] With regard to formal respite services, carers of people living with dementia value an empathetic and respectful approach and the opportunity to receive education and information. [8] For recurring respite, carers value the familiarity of staff members and find it reassuring. [8]

Quality Statement

Much of the literature addresses respite care for adults in general with few papers are specific to respite care for older people receiving palliative care and their carers. The papers were of low to high quality. The costs and outcomes of respite are difficult to measure and evaluate as there are many factors and variables. [3]

 

Page created 24 November 2017

  • References

  • About PubMed Search

  1. 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.
  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. Hamilton M, Giuntoli G, Johnson K, Kayess R, Fisher KR. Transitioning Australian Respite (SPRC Report 04/16). Sydney: Social Policy Research Centre, UNSW; 2016.
  4. Department of Health and Ageing. National Respite for Carers Program - Policy Guidelines. Canberra: Department of Health and Ageing; 2012.
  5. My Aged Care. Respite care [Internet]. 2015 [updated 2015 Jun 30, cited 2017 Nov 24].
  6. Carer Gateway. What is respite care? [Internet]. 2017 [updated 2017 Feb, cited 2017 Nov 24].
  7. 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.
  8. 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.
  9. 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. Health Soc Care Community. 2014 Jan;22(1):1-12. doi: 10.1111/hsc.12036. Epub 2013 Mar 27.
  10. 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.
  11. 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.
  12. Swerissen H, Duckett, S. Dying Well. Carlton (VIC): Grattan Institute; 2014.
  13. 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.
  14. 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.
  15. 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.
  16. 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.

Searches

Search String

("Respite Care"[Mesh] OR Respite[tiab] OR "Adult Day Care Centers"[Mesh] OR day care[tiab])