The problem/ issue
Family carers of people suffering from Alzheimer’s disease struggle with numerous ethical problems but receive little help in coping with these problems.

Patient centred
In this case it is the family carers of the patients that have been at the centre of the research. The major part of this research has involved detailed interviews with the family carers – spouses, daughters, sons, daughters-in-law – of those with Alzheimer’s disease or other forms of dementia. These interviews have focused on the experiences of these family members in caring for their relative. Three people with experience of such caring were selected by the Alzheimer’s Society to form an advisory team for this research. The carer’s booklet that is one output from this research has been developed with feedback both from the advisory team and from carers who took part in the research.

Rooted in the real world
As outlined above, the principal source of data in this project has been the actual experiences of those family members who have cared for a person with dementia, and not the suppositions or assumptions or perspectives of the health professionals, still less the presuppositions of the researchers.

Ethical analysis
This project has required the identification and clarification of the ethical issues that carers talk about. Carers do not, by and large, use the language of ethics. But many of the major problems in caring that they talk about are ethical in nature. Issues such as: should I lie to my relative in order to get him to take his medication? Should I stop him driving, and if so, how? Should I lock him in the house to prevent danger from wandering? Should I allow him to go to a nursing home even though I once promised him I never would?

Outputs
To help carers directly:
Publication in association with the Alzheimer’s Society of a booklet for family carers to help them with these difficult decisions.
Talking about the research at meetings of the Alzheimer’s Society.

To improve professional / service delivery:
A clear finding from the research was that carers report getting little help from professionals in making these difficult ethical decisions. We will be seeking further funding in order to develop training for local Alzheimer’s Society personnel, and for community psychiatric nurses aimed at helping them to support carers in these types of decision.

Presenting the results at meetings of professionals involved in helping family carers: psychiatric nurses and psychiatrists.

To further the discipline of medical ethics:
Most academic work in medical ethics is driven by issues that either health professionals or philosophers consider significant. This research, by contrast, is “bottom up”, that is, it identifies the issues from the carers’ perspectives rather than the professionals’. This work will be published in relevant academic journals, and presented at relevant meetings and conferences, in order to encourage other academics to work on issues that are of direct relevance to family carers.

Electronic outputs:
Many of the carers in this research have given valid consent for he interviews to be used as part of DIPEx: an electronic resource of patient experiences for patients and carers. The Ethox team is working with the DIPEx team (also based in the University of Oxford) to select the interviews to be put into the DIPEx unit on dementia.

We will discuss the possibility of the carers’ booklet being made available electronically for carers and professionals who prefer this medium.

Key perspectives
Communication

For more information about this project contact: tony.hope@ethox.ox.ac.uk