Caring without limits? : Sufferers of Dementia/Alzheimer's disease : A study of their carers

This Report describes the findings obtained from a nationwide study of carers who are looking after a particular group of elderly people - those suffering from Alzheimer's disease and other forms of dementia. The focus of the study is on the carers, on their experiences and perceptions of the caring role under these particular circumstances and on their primary needs and concerns. The study seeks to illustrate the lives of the carers and to identify and then discuss the policy issues arising from the findings. The experiences of the carers are explored within a framework developed in a previous study which views caregiving as a process with different stages: the decision to become a carer; becoming a carer; daily carrying out of caring tasks; review of caring role; and termination of caring role. Based on this framework the Report described who the carers are and how they happened to become the carers. The nature of the disabilities, symptoms and problem behaviours manifested by the dementia sufferers being cared for are described along with the extent of dependency exhibited. The Report outlines the kinds of tasks involved in the daily caring routine for a dependent person with dementia and explores the elements of caring most frequently experienced as problematic by the carers. The level of support - both in practical and emotional terms - which the carers receive from statutory and informal sources is outlined and the perceived primary needs of the carers and the services needed to address these needs are identified. The Report explores the particular stresses and strains involved in caring for a dementia sufferer and the impact which caregiving can have in different areas of the carer's life. In those cases where the dementia sufferer is now in long-term care, the Report describes the circumstances which led to institutionalisation and the ensuing consequences in the life of the carer. While the primary focus is on carers of elderly dementia sufferers, the Report also includes the findings obtained with a sub-group of carers looking after dementia sufferers who are not elderly. The Report explores the particular nature of caring for this latter group and compares the stresses, strains and needs involved when the dementia sufferer is elderly and when s/he is in a younger age-bracket. The study represents a contribution to the public debate on community care of dementia sufferers and provides data relevant to the question of how carers may be enabled to continue caring without undue cost to the quality of their own lives