Respite care provision for older people with dementia: a review of the literature.
Leeds: Nuffield Institute for Health. Community Care Division, 1995
Summary
This review is concerned with the history, current provision and future plans and recommendations for respite care for older people with dementia and their carers.
Context
Dementia is a term used to describe loss of cognitive abilities in someone who was intellectually intact. The functioning scale of the OPCS survey (1988) describes severity of the illness in arms of ability to be able to carry out everyday activities. The often insidious nature of the onset of most types of dementia can make it difficult for family members to acknowledge that their relative is ill, and this situation can exist over an extended period of time. The physical, emotional and financial burden of caring for someone with dementia can have differing implications depending on the social context within which care is being provided. The restrictions upon lifestyle placed on carers are enormous given that caring includes coping with a high degree of physical burden, and managing problematic behaviour. Respite care for older people with dementia describes a wide range of services, including day care, short stays in residential establishments, and various kinds of relief care within the home.
Contents
After setting the context by exploring what is meant by the terms 'dementia', 'carer' and 'respite care' the review goes on to look at how people's needs are being met by provision of respite care, focusing specifically on whose needs are being met and who the beneficiaries are - the users, the carers, or those responsible for the planning and allocation of services. Service aims are examined, along with targeting and allocation of services.
The next chapter deals with the benefits of respite care to carers and the person with dementia, as well as reasons for refusing respite services. Factors influencing the benefits are examined.
Outcomes, or the results of provision of the service, are focused on next. Outcome related to policy, prevention of entry into residential care, cost effectiveness, outcomes for carers, and outcomes for users are reviewed.
Findings
- The prevalence of dementia increases as life expectancy extends; the illness follows a relentless course of deterioration and a diagnosis of dementia is a predictor of admission to residential care.
- Families accept the main burden of caring; carers are usually poorly informed about the illness and unprepared for the extent of behavioural problems that follow; carers are not always adequately or appropriately supported and the needs of the carer and the social context within which caring takes place need to be taken into account.
- Respite provision is generally limited to institutional respite care and day care; there has been a policy shift away from the needs of the carer to those of the user.
- Respite care is an invaluable service for carers but they often find it difficult to assert their needs and may require professional support in order to accept respite care on their own behalf.
- Service providers are frequently of the opinion that respite care prevents admission to residential care; this fails to acknowledge the burden on carers as the person with dementia deteriorates. High costs are involved in caring for someone with dementia, whatever the location of the care.
Recommendations
- Development of respite services needs to occur in a coordinated manner, matching the requirements of the local community.
- Better information about service availability would facilitate this process.
- The growth of innovative respite services should be encouraged, together with adequate funding.
- Respite care needs to be made available to carers at all stages of the caring process, not just in response to a crisis.
- Access to services needs to improve for minority groups.
- The needs of carers as well as those of users need to be adequately addressed.
- Staff working in respite services require training in the needs of carers as well as users. Respite care should be used as an opportunity to educate carers so that they are better able to cope with the problems they face.
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