Hughes, Julian C.

Background: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. Aim: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. Design: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed.

There has been little work on the ethical issues facing non-professionals who care for relatives or others with dementia. A qualitative pilot study was conducted in ten such individuals, eight of them women, caring for persons drawn mainly from one general practice. The interviews indicated that many of the dilemmas faced by carers are ethical and that the issues differ from those faced by professionals. Ethical issues are sometimes the most troublesome matter for carers. Unlike issues for professionals, they arise from a personal context and are shaped by long-term relationships.

In its latest report on palliative care, the health committee of the House of Commons recorded the Department of Health's admission that the lack of palliative care for patients without cancer was the greatest inequity of all.1 In the United Kingdom, people die in hospices almost solely from cancer, although it accounts for only 25% of all deaths.1 w1 Yet patients dying from dementia have been shown to have healthcare needs comparable to those of cancer patients.2 The palliative care approach provides appropriate control of symptoms, emphasises overall quality of life, takes a holistic appr

Background: Much has been written on ethical issues in dementia, but usually from the point of view of the various professionals involved. Whilst there has been an increasing amount of interest in the psychosocial problems that face the carers of people with dementia, the ethical nature of some of these problems has largely been ignored.

Objective: To review the literature on ethical issues in dementia from the perspective of the main, non-professional carers of people with dementia.

There has been little work on the ethical issues facing non-professionals who care for relatives or others with dementia. A qualitative pilot study was conducted in ten such individuals, eight of them women, caring for persons drawn mainly from one general practice. The interviews indicated that many of the dilemmas faced by carers are ethical and that the issues differ from those faced by professionals. Ethical issues are sometimes the most troublesome matter for carers. Unlike issues for professionals, they arise from a personal context and are shaped by long-term relationships.

Once again the issue of using electronic tagging to safeguard older people who wander has attracted media attention. It is tempting to see the arguments as simply two sided—one side stressing the need to ensure safety and the other waving the banners of civil liberties and human rights. We think that this is not simply a factual matter but one that touches important values to do with respect for people. The correct position, therefore, is to face the complex dilemma.