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 and Aged Care) 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] Older male spousal caregivers in particular have been found not to use in home respite care due to the perception that this signals failure to provide and care for their wives, [17] however other studies have found spousal carers and female carers also 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]
Last updated 16 June 2021