The needs of carers

Download a PDF of Chapter 7 – The needs of carers (13 pages)

There will often be a very close relationship between the person with dementia and their carers. Their needs and interests become intertwined. Caring for people with dementia must therefore also involve caring for the carers.

Joint support for the person with dementia and their carers

A diagnosis of dementia has serious implications for those close to the person receiving the diagnosis. Close family and friends have to adjust to the effects it will have on their own lives.

We conclude

Professional support (from doctors, nurses and others) in dementia should have a wide focus that includes helping the family to support the person with dementia.

The need to be trusted

The issue of trust is central in any caring relationship. Most carers provide a level of care that compromises their own health and well-being, and want to help and support the person with dementia as much as they are able.

We conclude

Unless there is evidence to the contrary, there should be a presumption of trust in carers by health and social care professionals and care workers. Such trust is a key part of any ‘caring partnership’.

Confidentiality

Doctors, nurses and other professionals may be hesitant about sharing confidential information with carers if the person with dementia is not able to give consent. The current legal position is that when a person lacks capacity, their confidential information should only be disclosed to others where it is in the best interests of the person to do so.

We conclude

We support the current legal position on confidentiality. However, guidance in the Mental Capacity Act Code of Practice on when it will be in a person’s best interests to share information is too restrictive, and carers do not always get the information they need to carry out their caring role. In general, carers who are involved in making a decision on behalf of a person with dementia will need the same level of information as any other member of the care team.

Considering carers’ own interests

The interests of the person with dementia and their carers are often complex and intertwined. In a family, it will rarely be the case that one person’s interests always take priority: some thought will be given to everyone’s interests, and some degree of compromise found.

We conclude

Professionals such as doctors, nurses, clinical psychologists and social workers have an important role to play in supporting carers to think about their own needs when weighing up difficult decisions, particularly around future care options.

Previous work

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Nuffield Council on Bioethics
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