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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- 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 participants. [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 participants. [5]

Quality Statement

Much of the literature addresses respite care for adults in general; [4-6,10] 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, [11-13] and five papers focus on respite care for people with dementia. [2,3,8,9,14] 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. [1,5,6,15-19]

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. [18,19]

Even when death occurs in hospital, 90% of patients spend most of their final year at home or in the nursing homes where they live. [11] 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. [2,11]

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, [16] for older adults [15] 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. [3,8,15-17]

Research suggests that different carers and participants value and need different types of respite services in different settings. [2,5,15] Attention to the needs of the carer and the person receiving care is important in shaping respite care. [2,5,9,11,14-16] 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 care or the disruption of routine. [2,5,9,15] Services may be difficult to find or seem costly. [15,16]

Supporting people at end-of-life, the role of careworkers providing respite care to enable family members to have a good night’s sleep is recognised. [11] 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 care worker, 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 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. [11] Herber et al. [11] acknowledge 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 note similarities in the tasks and roles in the UK and USA. They identify areas that careworkers could be more strongly supported with training, role definition and peer-support. [11]

Palliative day care services (PDS) provide holistic, individualised palliative care to people diagnosed with advanced life-limiting illnesses. [12] These can be either generalist palliative day care or specialist palliative day care. [12] Although, not specifically referred to as respite, they do provide support and a break for patients and carers.

Stevens et al. [12] recognised that PDS is liked by attendees, but were unable to report whether it improved wellbeing. They call 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. [13] report that SPDC can reduce isolation, increase social support, encourage communication and provide activities. [13] They note that the change of scenery and the removal from an environment in which they were increasingly dependent and restricted is important to participants. [13] This would often free them mentally and restore a sense of self. [13]

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] This care 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 (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] note 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, and apprehension of the person with dementia becoming angry, resentful or distressed from respite, can hold back carers from using respite. [3,8] Particularly spousal carers and female carers seem to not use respite care. [8] Neville et al. [3] observe 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] note 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 is not clearly understood as it depends 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] suggests that a carer may have most benefit from what he/she is able to do during respite. [20]

Day care is the most commonly investigated type of respite care that can provide positive outcomes for both carers and care recipients. [9] Vandepitte et al. [9] and Tretteteig et al. [14] 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). [14] Like Neville et al. [3]

Vandepitte et al. [9] observe 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. [14] report that day care can help reduce behavioural problems in people with dementia, and possibly improves their sleep quality for carers. [9] Tretteteig et al. [14] point out that the experience of day care respite depends on the quality of treatment at the day care centre and how the service meets 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., [14] Maayan et al. identified a need for well-designed trials to build the evidence base. [2] Vandepitte et al. [9] call 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 caregivers, 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 care recipients needs to be better understood.

Page created 24 November 2017
  • References

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  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.
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