Helping people with dementia make their own decisions
Don't make decisions for people with dementia that they can make themselves
People with dementia may have difficulty making some decisions, but will be able to make other decisions themselves. For example, a person might not be able to make decisions about their medical treatment, but could make decisions about what they eat, or which television programmes to watch.
Different people with dementia will be able to make different decisions. As the dementia progresses the decisions an individual will be able to make will change.
Sometimes you have got to make a decision to do something or other and you are not quite sure whether you should, so you need a very good friend to help you to go through it.Person with dementia quoted in ‘My name is not dementia’ (Alzheimer’s Society, 2010)
For some people with dementia, there will be times when they could make a particular decision and times when it would be harder for them to do this. For example, many people with dementia find it harder to concentrate later in the day. If a decision can wait until a person can make it themselves, this is what must happen.
Supporting people to make their own decisions
Where possible, people must be supported to make their own decisions. The kinds of support people with dementia may need include:
- giving people the information they need to make a decision
- allowing people time to think over a decision, or talk it through with an expert, or someone they trust
- explaining things in a way that is easy to understand
- making sure their hearing aid is working, or they have their glasses on
- using pictures, for example when choosing what meal to have
- having someone who can speak the person's own language to explain the decision to them
- choosing the best time of the day to talk about the decision.
Some decisions are very difficult and people may need time to make them. People might also change their mind several times. This doesn't mean they can't make the decision themselves.
What if I disagree with the person's decision?
Just because you think a person is not making a sensible decision doesn't mean that they can't make that decision for themselves. For example, a person might choose not to eat any vegetables or fruit. Another person might choose to spend more money on alcohol than you would.
The law says that people can make unwise decisions. For example, we all know it is unwise to smoke, but the law allows adults to do so.
If you are worried about a decision someone has made, you might want to check that they understand what they are doing.
The Social Care TV video, 'Raymond's Money', looks at the dilemma faced by a home care worker, Wendy, who is asked by Raymond, a man newly diagnosed with dementia, to place a large sum of money on the Lottery. Wendy doesn't think this is a good decision, but Raymond's wishes are clear. Notes accompanying the film discuss the principles of the Mental Capacity Act and how they can be applied to this story.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Helping people make their own decisions
- What the research says: Making decisions
Further reading Open
Alzheimer’s Society (2010) My name is not dementia, London: Alzheimer’s Society.
Alzheimer’s Society and Jackie Pool Associates (2009) Supporting people with dementia using the MCA, London: Alzheimer’s Society.
Department for Constitutional Affairs (2007) The Mental Capacity Act 2005 Code of Practice, London: The Stationery Office.
Royal College of Nursing, Dementia: Decision making and capacity, Online resources.
SCIE's Mental Capacity Act (MCA) resource. This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.
Social Care TV (2009) ’Raymond’s Money’.
Useful links Open
Dementia: Making decisions
This 2012 guide from Alzheimer Scotland offers practical advice and information on decision-making for people appointed to make decisions on behalf of someone with dementia either as an attorney or guardian (in Scotland) or deputy (in England and Wales).
Making decisions: a guide for people who work in health and social care
This 60-page guide prepared by the Mental Capacity Implementation Programme in 2009 gives a broad overview of the Mental Capacity Act and is aimed at professionals who are supporting people who are unable to make some decisions for themselves.
Nothing ventured, nothing gained: risk guidance for people with dementia
This 2010 Department of Health guidance presents a risk enablement framework for assessing, enabling and managing risk collaboratively with people with dementia and their carers.
SCIE Mental Capacity Act resource
This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.
Related pages from this section Open