Making decisions in a person's best interests
How best interest decisions must be made
Where it has been decided that a person with dementia is unable to make a decision for themselves, care staff must do what is in the person's best interests. This is known as a 'best interests decision'.
When deciding what is in the person's best interests you need to:
- Involve the person in the decision as much as possible: find out what their views and wishes are (including those they had before they lost capacity to make the decision) and where possible involve the person in all meetings where decisions are being made about them.
When the day comes that I have got to start asking for help... I would like to think that I could still be consulted and still have some say.Person with dementia quoted in ‘My name is not dementia’ (Alzheimers Society, 2010)
- Respect their culture, including their religious beliefs.
- Talk to people who know them well: this could include family and friends, but also those care staff who have a good knowledge of the person.
- Try to limit restrictions on the person. For example, if the person doesn't understand the risks of going out alone, make sure they still have opportunities to do this with the necessary support.
Decisions about health treatment
Doctors, nurses, dentists and other health professionals are responsible for deciding whether people with dementia can make decisions about whether to agree to have treatment (known as 'giving consent', but it's important to remember that, if a person has the mental capacity to decide, they can also decide to refuse treatment). This includes any treatment for the dementia as well as all other health issues. If they find that the person is unable to do this, they then have to decide what would be in their best interests.
Doctors should speak to care staff who know the person well when they make best interests treatment decisions. This is in addition to family and friends.
Care staff may be able, for example, to say:
- what the person's views and wishes are, including things they may have said before they developed dementia or at an earlier stage of dementia
- which family and friends need to be involved
- how the person would cope with injections or other forms of treatment.
Care staff must be careful that they are advising on what would be best for that person, given their knowledge of the individual, rather than what the staff member would want for themselves.
The Mental Capacity Act allows people to make Advance Decisions to Refuse Treatment (see the feature on Advance care planning in this section).
Doctors must comply with an Advance Decision to Refuse Treatment unless it is found that the person lacked capacity to make the decision at the time the statement was made.
The only other exceptions are:
- the advance decision isn't relevant to this particular treatment (for example, Mrs Smith has made an advance decision to refuse antibiotics for chest infections, but the doctor wants to give antibiotics for an infected toe: her advance decision 'isn't relevant')
- the advance decision is to refuse life-sustaining treatment and hasn't been properly made (if the result of refusing treatment may be that the person will die, the advance decision must be in writing, signed, witnessed by someone, and have a statement saying something like 'I know that this decision may lead to me dying, but wish it to apply anyway')
- if new treatments have come in which may have affected the person's decision had they known about them at the time.
When serious medical treatment decisions have to be made in someone's best interests, and the person does not have family or friends who can be consulted as part of the best interests decision-making process, the person must be supported by a special kind of advocate: an Independent Mental Capacity Advocate (IMCA).
In some cases, a person with dementia may have given power to someone else to make their health decisions. This is called a Lasting Power of Attorney for health and welfare (see the feature on Advance care planning in this section).
Care staff supporting people with dementia with medical treatment
While care staff will not make decisions about what treatment a person with dementia has, they are often involved in giving the treatment – for example, supporting the person to take medication or to apply cream.
When this happens care staff must have a reasonable belief that either:
- the person has – with mental capacity – asked for help with their treatment or
- the person lacks capacity to make a decision about the treatment and it is being given in their best interests.
If a doctor has prescribed the treatment to a person with dementia, this would be enough of a basis for care staff to feel assured that the treatment is in the person's best interests.
If a person often resists the treatment to the extent that they need restraining, the manager of the care home or support service should ask the doctor to re-consider the best interests decision, and look for any alternative, or less restrictive options.
Decisions about where the person lives or stays
Decisions about staying at home, going into hospital or moving to a care home are often made for people with dementia. Where possible, the person must be supported to make these decisions themselves. This means, if the person's capacity is sometimes better than at other times (known as 'fluctuating capacity'), the person should be enabled to make the decision when they are most able to do so.
These are very important decisions, so a lot of care must be taken to check whether the person can make the decision themselves before making a decision in their best interests. Usually social workers or care managers will assess the person's capacity to make this decision, since they will often be the decision-makers if the person lacks the capacity to decide (for more on this, see the feature on Capacity: can the person make their own decisions? in this section).
If the person lacks capacity to make decisions about where they live, the local authority or NHS trust is likely to make the decision. This includes the hospital admitting the person, the local authority funding the person's placement in a care service, or a clinical commissioning group funding a nursing home placement.
In some cases, a person with dementia may have given power to someone else to make a decision about where they live. This is called a 'Lasting Power of Attorney' for health and welfare (see the feature on Advance care planning in this section).
People lacking capacity to make decisions about where they live, who don't have family or friends to represent them, must be supported by an Independent Mental Capacity Advocate (IMCA). This is necessary if the person is likely to stay in hospital for more than 28 days or in a care home for more than eight weeks.
If a person is to stay in a hospital or care home, and they cannot consent to that because of a lack of capacity, it is highly likely that the stay in the care home or hospital will need to be authorised under the Deprivation of Liberty Safeguards. Similarly, people who lack the capacity to consent to move to a supported living scheme such as Extracare housing, may need that move to be authorised by the Court of Protection, if the care regime means they are not free to leave the setting, and are under continuous supervision.
The Deprivation of Liberty Safeguards and applications to the Court of Protection will be replaced, probably in 2021, by a new scheme – Liberty Protection Safeguards.
Decisions about money
There are lots of different decisions people make about their money and any property they have. Some decisions are more difficult than others. For example, a decision to sell or buy a house is more difficult than deciding whether to spend money on fresh flowers or toiletries.
Like any other area of decision making, people with dementia should be supported to make as many decisions as they can make about their money. Best interests decisions must be made when a person has been assessed as lacking capacity to make the relevant financial decision themselves.
Legal powers are needed before making best interest decisions about a person with dementia's money or property. There are three possibilities.
- Lasting Power of Attorney
Adults can give someone else the power to make decisions about their money and property. This is called making a Lasting Power of Attorney (property and affairs). Before the Mental Capacity Act 2005, there was a very similar power, called Enduring Power of Attorney. (For more on this, see the feature on Advance care planning in this section.) People acting under this power must act in the person's best interests.
If someone has lost capacity to make some financial decisions, an application can be made to the Court of Protection to appoint someone to look after their money. They are called a 'property and affairs deputy'. Usually this will be a relative or solicitor. They must act in the person's best interests.
The Department for Work and Pensions can appoint someone else to receive a client's benefits and to use that money to pay for expenses such as household bills, food, personal items and residential accommodation charges. An appointee may be a relative or friend. They could also be a representative from the local authority or health trust. Appointees can only make decisions about the money received in benefits.
If anyone thinks that an attorney or deputy is not acting in the best interests of the person, they should report this to the Office of the Public Guardian, which oversees these roles.
Care homes often look after some of the person's money on behalf of attorneys, deputies or appointees to buy toiletries, clothes or food, or to pay for hairdressing or meals out. It is helpful if the person with legal responsibility for the money writes down a guide for the staff about how much can be spent (for example, £30 a week) and what it might be used for.
Where this happens, care staff will still need to support the person with dementia make their own decisions where possible about how their money is spent. For example, the person may be able to make a choice between having a meal out or buying new clothes.
Where care staff do not believe the person with dementia can make a decision about how some of this money is spent, they will have to spend it in their best interests. As well as getting the person's views, and finding out what is important to them, this may involve talking to people who knew them before they lost capacity to make decisions. For example, when deciding what clothes to buy for someone who can no longer make that decision themselves, it would be important to find out what kinds of clothes they have always liked or not liked, rather than buy what is convenient for the care staff. Talking to a family member may reveal that a woman would never wear trousers and liked clothes that reflected her cultural background. In this case, using her money to buying her some jogging trousers would not be in her best interests.
The neglect or ill-treatment of people with dementia
The deliberate neglect or ill-treatment of people lacking capacity to make some decisions is now recognised as a crime under the Mental Capacity Act. This applies to all those who work with people who have dementia, including care staff and professionals. The maximum sentence is five years in prison.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Best interests
- 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.
Ministry of Justice (2008) Mental Capacity Act 2005: Deprivation of Liberty Safeguards Code of Practice, London: The Stationery Office.
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.
SCIE (2011) The Deprivation of Liberty Safeguards, At a glance 43, London: SCIE.
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