Personal experiences of dementia and care: the views of people with dementia and their relatives.

This study examined the possibilities of empowering people of a range of severity of dementia, by eliciting accurate views and feelings from them about services and including
them in service evaluation. The study was underpinned by a four tier empowerment framework, which incorporated issues relating to the individual, the organisation, the service user and society. An ethnographic approach to data collection and analysis was employed. Twenty-seven people with dementia from Jewish Care residential and day care
settings were interviewed and their daily lives videotaped and observed and interviews conducted with next of kin. Efforts were made to empower and involve participants in the
research process as far as possible. Triangulation of interview, video and observational data reveal that with appropriate methods and skills it is possible to elicit accurate information from people in various stages of dementia, and thereby involve them in service evaluation. A number of techniques for communication are highlighted. Findings also show that although relatives' views are frequently taken as proxy for those of people with dementia, they may lack knowledge about services and the perceptions of people with dementia. In residential care their views differed considerably to those of people with
dementia, suggesting that is important to consult with the person with dementia themselves.
The data suggest that the experience of dementia was disempowering for both people with dementia and their relatives. In addition, although day care services were perceived more positively, people with dementia were disempowered by a lack of influence, control, communication and social aspects of care in residential settings and relatives by a lack of support and information in the community. Although participants were of Jewish origin
and from Jewish settings only, it is considered that the results are more widely applicable to other groups of people in other settings. A number of recommendations are made about creating a more empowering workforce and environment and a model of empowerment for dementia research and practice is outlined.

A thesis submitted for the degree of Doctor of Philosophy to Middlesex University.