If you're affected by dementia, researchers want to hear from you
Publication Date:16/05/2008
Do you care for someone with dementia, or have you been diagnosed with this condition yourself? If so, it's likely you frequently face difficult decisions about the best way to care for your loved one, or about how you yourself would like to be cared for.
Now, researchers are asking for the views of people with dementia and their families on some of the dilemmas they face and the difficult decisions they have to make. They plan to use the responses to develop advice for carers, families and health professionals.
What is dementia?
Dementia is a progressive brain disorder that leads to memory problems, communication problems and personality changes. It usually starts as mild forgetfulness and confusion, such as forgetting the names of everyday objects. But as memory problems get worse, someone might forget how to do everyday things, like getting dressed. They may not be able to find the right words when talking, or understand what's being said. They may also start to behave differently, get easily upset (agitated) or become aggressive.
Eventually, people with dementia may not be able to look after themselves. If they are left alone, they may wander off and get lost. In the later stages of the disease, people with dementia often need full-time care.
The most common type of dementia is Alzheimer's disease. But there are many other types, including dementia with Lewy bodies, and vascular dementia.
Why are researchers calling for a debate?
Caring for someone with dementia can be very demanding. Carers, as well as doctors and nurses, might find themselves wondering if what they are doing is ethical. For example, is it right to hide someone's tablets in their food because that's the only way they will take them? Or is it OK not to tell the truth when responding to someone with dementia? We normally take it for granted that we should tell people the truth. But sometimes withholding the truth can avoid distress. For example, a daughter might agree that her mother's husband is alive, even though he has been dead for many years. But if a person's grip on reality is weak, routinely deceiving them in this way may undermine that grip even further.
The researchers say they want to hear people's views on these kinds of dilemmas. There are around 700,000 people in the UK with dementia. By 2051 it's thought there will be 1.7 million people living with the condition. This means many more of us will face these questions at some point in the future.
The researchers say they do not want to make rules about what is right or wrong, but to give people affected by dementia useful support and advice.
What questions are being asked?
The researchers are planning to collect people's experiences of dementia and their views on the decisions faced by the person affected and those caring for them. The questions include:
- How can carers, families and doctors decide about what treatment and care a person would have wanted before they developed dementia, and what they appear to want now?
- Are 'living wills' an effective way of making decisions about what treatment someone would or would not like in the future, when they are no longer able to make decisions for themselves?
- Is it ever right to restrain a person with dementia, for example, to reduce the risks of wandering? Some people say this overrides people's personal freedom
- Should people with dementia be involved in research if they are no longer able to choose for themselves whether or not to take part?
Who is calling for the debate?
The debate has been organised by the Nuffield Council on Bioethics, an independent body that looks at the ethical issues raised by new developments in medicine.
How do I take part in the debate?
You can find out how to respond to the debate by going to the website of the Nuffield Council on Bioethics (http://www.nuffieldbioethics.org) and then going to the website dedicated to the consultation (http://consultation.nuffieldbioethics.org). You can reply electronically, by email or sending in a form. If you would like a copy of the consultation document sent to you, you can contact Katharine Wright on +44 (0)20 7681 9619. Fax: +44 (0)20 7637 1712.
People have until July 31 to take part in the consultation.
From:
Nuffield Council on Bioethics. Dementia: ethical issues. May 2008. Available at http://www.nuffiedlbioethics.org.
To learn more about Alzheimer's disease and other types of dementia and how they're treated see our information on dementia.
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