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Volume 715: debated on Wednesday 2 December 2009


Asked By

To ask Her Majesty’s Government what is their response to the Nuffield Council on Bioethics’ report on the ethical issues raised by dementia; and whether its recommendations will be incorporated into the National Dementia Strategy.

The Government welcome the excellent report by the Nuffield Council, which sets out an ethical framework for dementia. I am pleased to tell the noble and right reverend Lord that the national dementia strategy makes it clear that information should be available on what options exist for planning ahead for those with dementia to ensure that their wishes are considered. In implementing the strategy, the Government will continue to work with stakeholders to ensure that everyone working with people with dementia is supported in making ethical decisions.

I thank the Minister most warmly for her very positive reply. Would she accept that the vast majority of the 700,000 people suffering from dementia are cared for at home and that therefore carers at home should be treated as genuine care partners, together with the professional team? They should be trusted and given access to information. What would her Government do to promote that?

That was, I thought, one of the most powerful points made in the Nuffield report. In the consultation that Nuffield carried out, many carers expressed concern that they were treated with suspicion by professionals and felt that they needed to earn trust, despite the fact that they were providing most of the daily care. We totally agree that carers should be treated as care partners by professionals. The national dementia strategy makes it clear that family carers are the most important resource available to people with dementia and need to be supported and fully involved by the professions in the care that they provide.

Does my noble friend’s indication of that extend to helping carers at home to make difficult decisions that are very much in the field of ethics? Those decisions may go from asking themselves, “Can I lock him in while I go to do the shopping?” to deciding whose needs are paramount when residential care is being considered. Will the Government help carers with those kinds of ethical decisions?

The report refers to many of those decisions. The person who is caring for the person with dementia is best placed to take those decisions, but they need support in that. Proper education and training for professionals and carers have been identified as something that we need to address; we need to look at where there are gaps, which indeed there are, and we need to make sure that this is one of our priorities.

Does the Minister agree that it is important that people should be able to make decisions in advance? None of us knows who is going to develop dementia; it can occur in anyone. In particular, people should be able to make decisions about their own future while they are still able to do so, or even decisions as to whether they would want to take part in a research project if they develop dementia.

The noble Baroness raises two important points. The first is the need to think ahead and to encourage people to appoint a welfare attorney, if they can, who will support them when the time comes that they no longer have the capacity to do so themselves. Secondly, the ethical issue that the report points to about research is how someone who lacks capacity can take a decision to participate in the dementia research that you might wish to undertake. It is important that those issues are discussed while the person still has capacity and that the decisions are recorded, so that the people who have the care of that person know what their wishes would have been.

My Lords, I declare an interest as a patron of the Alzheimer’s Research Trust. Following the Minister’s response to the last question, does she agree that the real issue is to devote more resources to research into dementia as a whole and particularly, as the Nuffield report suggests, into the social research, which covers all the aspects of care and people’s experience when they suffer with this disease? In a sense, that is one thing that is sadly lacking in present research resources.

My noble friend makes an important point. We are currently commissioning research into best-interest decisions taken under the Mental Capacity Act. As part of the strategy, my honourable friend the Minister has, as my noble friend will know, established a ministerial group of which the Alzheimer’s Society is part, following on from the dementia research summit which pointed to many of those priorities.

My Lords, does the Minister agree with the Nuffield report that, instead of the risk assessments that are made in care services on a regular basis, we should be looking toward risk-and-benefit assessments, so that people with dementia get some chance to practise everyday activities? In Holland, for example, they do things such as making their own beds, instead of being told that it is unsafe, which is the British practice.

I thought that that was also an important part of the report. The report points to, for example, filling in a pond in a care home, which had given enormous pleasure to people, because of the risk. The noble Baroness is absolutely right. Overall, the Government are taking this report very seriously indeed. It has messages not just for us and how we deal with the dementia strategy but for all professionals and people who are dealing with people with dementia.

My Lords, does the Minister agree that dementia is an illness, not a social malaise, and that the levels of support available for those suffering from dementia should be comparable to those for people being treated for other illnesses under the National Health Service?

Dementia care is not classed as social care. The care needs of a person with dementia include their healthcare, which is of course provided free for anybody with a long-term condition.

Would the Minister assure this House that respite care for carers is given a high priority? Carers have to bear a tremendous burden and they cannot do it all the time, every month, every year.

The noble Baroness is absolutely right and that is part of the strategy. One of my neighbours, unfortunately, has Alzheimer’s disease; the respite care that her husband receives is vital to his welfare and therefore to her care.

Does the Minister agree with the Nuffield Council that much more needs to be done to include people with dementia in society as equals? What action will her department take to make the services that people use every day, such as shops, restaurants and leisure services, more dementia-friendly?

The noble Baroness raises another important point. The Disability Discrimination Act says that shops and other places where anybody with a disability might go should be friendly for their use. Part of the problem is ignorance about this. We are launching a public awareness campaign about dementia in the new year.