Hospital care for dementia sufferers has been in the headlines this week but a recent report for the Nuffield Council on Bioethics has highlighted that carers of people with dementia need more support and advice.
Carers particularly need that advice and support in tackling the difficult ethical dilemmas that they face on a daily basis. These could be having to lie to a spouse to be able to get them to a day care centre, or worrying about a family member slipping in the bathroom - when going into the bathroom with them and intruding on their privacy can be very upsetting.
The report also highlighted that the services needed by people with dementia are often not available until a crisis occurs.
Professor Tony Hope, a psychiatrist with many years of experience of working with people with dementia and a Professor of Medical Ethics at The Ethox Centre, University of Oxford, chaired the working party that produced the report. OxSciBlog caught up with him to learn more.
OxSciBlog: What were the main findings of your report?
Tony Hope: Ethical issues arise frequently for carers in their day-to-day care. These issues are often difficult and stressful, and carers receive little help with these ethical issues. We also found that there’s often a stigma associated with dementia that is still a major problem for those with dementia and their carers.
Many people with dementia receive little support after initial diagnosis is made. In addition, some professionals withhold information from family carers that such carers need in order to properly fulfil their caring role because of excessive concerns about patient confidentiality. What is more, the amount spent on dementia research in the UK appears small in comparison with its importance. For example, cancers are about three times as common as dementia but receive about ten times as much research funding.
OSB: What are the sort of ethical dilemmas that families and carers of people with dementia experience?
TH: Carers routinely face dilemmas, such as whether to tell the truth or not when the truth causes some upset or stops the person taking part in an activity that is enjoyed. There’s the difficulty of balancing the need to minimise risk with enabling the freedom of the person with dementia, for example where a person may be at some risk from wandering or from cooking for themselves.
Similarly, technology, such as tracking devices or home video monitoring, might reduce risk but also invades privacy. And importantly, the carer’s own needs and interests have to be balanced with those of the person with dementia.
OSB: What can be done to help support carers?
TH: More information and support from professionals is needed in dealing with ethical difficulties. Forums to enable carers to discuss the difficult decisions with each other would also help. And carers need to be seen as ‘partners in care’ by professionals – unless there is evidence to the contrary there should be a presumption of trust in carers by health and social care professionals and by care workers.
OSB: Can you give any examples of where this is working well?
TH: There are many examples where things are working well, but they are sporadic and only available in some places. There are about 20 Alzheimer cafes throughout the country where people with dementia, their carers, and local professionals can meet. Admiral nurses provide support to carers in their home, but are not widely available.
In some areas, a GP with a special interest looks after the residents with dementia in all the local care and nursing homes, while a few hospitals employ specialist nurses or doctors for those who come to A&E departments or require treatment not primarily related to the dementia. And there are a few meeting places where people with dementia can attend film showings or have access to a hairdresser without feeling awkward.
OSB: What would you like to see happen next?
TH: We would like to see more support for carers – for example through more trusting relationships with professionals, opportunities to meet and share experiences with other carers, and encouragement to consider their own needs too. People with dementia need improved access to leisure activities that others take for granted. Shops, restaurants and leisure centres have a legal duty to enable people with dementia to access their services.
We recommended that the Equality and Human Rights Commission should provide practical guidance on how to enable people with dementia to access services. When a person is diagnosed with cancer, a wide range of services can be accessed. This is not true in the case of dementia. This is in part because some of the services required for people with dementia are classified as social care, rather than health care. Dementia is a medical disorder and the availability of services should not be determined by the classification of the type of care needed.