Alzheimer's Society's view on decision making

Find out what we think about decision making, advance care planning and the Mental Capacity Act 2005  

It should not be assumed that just because someone has dementia, they are unable (lack capacity) to make their own decisions. People with dementia should be supported in making their own decisions about their care and day to day life for as long as possible. Alzheimer's Society also supports people with dementia with advance care planning, which enables them to have a say in their future care and treatment. Timely diagnosis is vital for this to happen because it means people can get access to the right information and support as soon as possible.

The Mental Capacity Act 2005 (MCA) must underpin the decision-making and advance planning process. If implemented fully the MCA can support and protect people with dementia who lack capacity to make decisions for themselves, and ensure that any decisions made on their behalf are made in their best interests, and always with regard to the least restrictive option.

Decision-making and capacity

Being able to make a decision is called having capacity. Dementia can affect a person’s ability to make decisions because it can affect the parts of the brain involved in remembering, understanding and processing information. This does not necessarily mean that a person with a diagnosis of dementia lacks capacity to make decisions – capacity is time and decision specific. Because dementia is progressive, it is likely that a person with dementia’s capacity will reduce over time. The rate and the extent to which this happens will depend on the individual and the type of dementia they have. A good understanding of the person and the support they might need is essential in making sure that people with dementia are able to make their own decisions for as long as possible.

Mental Capacity Act 2005

The Mental Capacity Act 2005 (MCA) provides a framework in England and Wales for assessing capacity and for making decisions on behalf of people who lack capacity. The most important part of the MCA are the five principles. These provide the foundation for anyone working with someone who might lack capacity.

  1. People must be assumed to have capacity unless it is proven otherwise.
  2. People must be supported to make a decision.
  3. Everyone with capacity has the right to make decisions that may appear to be unwise or strange to others.
  4. Any decision made on behalf of a person who lacks capacity must be made in their best interests.
  5. Any decision made on behalf of a person who lacks capacity must be the least restrictive option.

Alzheimer's Society has welcomed the MCA - it has the potential to help transform the culture of rights and decision-making for people with dementia, however further work is required to make sure that the public understands their rights under the Act, and that  professionals understand the requirements of the Act and the powers that it creates. This was reflected in a House of Lords review of the MCA in 2014.

Alzheimer’s Society is part of the National Mental Capacity Forum and works with other organisations to improve understanding of the MCA and raise awareness of its importance for people affected by dementia.

Advance care planning

Planning in advance allows people to plan for a time when they might lack capacity to make a decision. This can be very beneficial for people with dementia. It allows them to put their affairs in order and provides reassurance that the right decisions about their care and treatment will be made in the future, even if they lack capacity to make that decision themselves.

The MCA provides for a range of ways people can plan ahead, including making an Advance Decision to Refuse Treatment or Lasting Powers of Attorney for health and finance. People should be encouraged to plan in advance at the earliest possible opportunity, so that things can be put in place before a loss of capacity. There needs to be greater awareness of the different options people have to plan ahead as well as clear, accessible information and support to help people do this. It is also vital that there are robust systems in place for communicating people’s wishes and that professionals are given effective training to understand and recognise the different ways that people can plan in advance.  

It is essential that there are robust safeguards in place to prevent abuse - any cases of suspected abuse must be properly identified and investigated in order to safeguard people who lack capacity. Financial institutions must work alongside organisations like the Office of the Public Guardian to investigate cases of abuse and to ensure that Powers of Attorney are used appropriately.

Further information

Post-legislative scrutiny of the Mental Capacity Act 2005, House of Lords (2014)

National Mental Capacity Forum

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