Planning for the future with cancer and dementia

Someone with dementia may have difficulty making decisions or communicating in the future. You can help them to think ahead about how they would like to be cared for in the future. This is sometimes called advance care planning. It includes:

  • Advance Statements – this means writing down how they would like to be cared for in the future.
  • Advance Decisions to Refuse Treatment – this means deciding which treatments the person you care for does, and does not, want to have.
  • Power of Attorney – this means that the person you care for can nominate someone to manage their affairs. For example, they can make decisions about care and treatment or property and finance.

It is also helpful for the person you care for to think about where they would like to be cared for in the future. They may be able to stay at home with help and support, or they may prefer to be cared for in a hospice or nursing home.

Making these decisions early can help you and the health professionals involved in their care in the future.

Making choices

If someone has dementia, it is likely that their ability to make decisions (mental capacity) will be affected in the future. There may come a time when they will not be able to make certain decisions or communicate easily. If they think ahead about their future care and treatment, it can help you and any other carers, such as health professionals.

There are different ways the person you care for can plan ahead. This is sometimes known as advance care planning. It includes:

  • their wishes and preferences for care
  • Advance Statements
  • Advance Decisions (or Directive) to Refuse Treatment
  • Lasting Power of Attorney.

Wishes for care and Advance Statements

The person you care for can talk to you or someone else they trust about how they would like to be cared for. They can also write down wishes and preferences for family or health and social care professionals. These are called Advance Statements.

Advance Statements of wishes are not legally binding. But they must be taken into consideration when healthcare professionals make decisions about the person’s care.

There are different documents that can be used to record wishes and preferences. You can ask the person’s doctor or nurse which documents are used in their area.

Advance Decisions to Refuse Treatment and Advance Directives

An Advance Decision to Refuse Treatment or Advance Directive is sometimes known as an Advance Decision. It is a decision about treatments the person you are caring for does not want to have. For example, they may decide that if their breathing stops, they do not want people to try to bring them back to life (resuscitate them). Or that if they are very ill and have an infection, they don’t want to be given antibiotics.

If the person you care for refuses a treatment, they will still receive good care and have medicines to help manage any symptoms they may have.

Lasting Power of Attorney

The person you care for can give one or more other people the legal power to manage their affairs. This is called Power of Attorney (PoA). These decisions may be about property or finances, or health and welfare.

Although someone can create their own Power of Attorney, it can help to speak to a solicitor. They will make sure that your PoA meets all the requirements of the law. If you don’t have a solicitor, you can find one by contacting The Law Society.

Power of Attorney can vary, depending on which part of the UK you live in.

You can read more information in our sections on advance care planning. We have different sections for each area of the UK. We have a section for England and Wales, one for Scotland, and one for Northern Ireland.

Dementia UK has a leaflet on Lasting Power of Attorney, which you may find useful.

Care options

It can be helpful for the person you care for to think ahead and make some decisions about where they will be cared for in the future. They may be able to stay at home with help and support. Or they can be cared for in a hospice or nursing home.

Where they will be cared for depends on:

  • what they want
  • what help they have from family and friends
  • what services are available in the area they live in
  • their medical condition.

Most people prefer to stay at home, as long as they know they will have good-quality care. Even if they choose not to be cared for at home, they can still be surrounded by people and things that are important to them.

Short-term care

If the person you care for decides to be looked after at home, they can still have some types of short-term care. For example, they may be able to go to a day centre during the day if you have to work. Hospices and residential homes may also offer short stays for a few days or weeks. This might be to have specialised care that helps control symptoms or to give you a break from caring.

Their GP, district nurse or specialist palliative nurse may be able to arrange for them to go into care for a short while. This might be in a:

  • hospice
  • hospital
  • residential home
  • care home with nursing (nursing home).

Care in residential homes or nursing homes

Residential and nursing homes offer short-term or long-term accommodation and care. Residential care homes or care homes with nursing provide different levels of care. A social worker or member of the healthcare team can explain the difference.

They can give you more information about local care homes and the type of care provided. They may also help you think about how to pay for care home arrangements and how to arrange this type of care. Organising care homes can take some time.

Lists of local care homes are available from your local social services department. The standard of care provided by care homes and care agencies is monitored across the UK by care regulators. These include:

Before choosing a care home or agency, you may want to check its standard of care with one of these organisations. You can also ask your healthcare worker or social worker to give you this information.

Hospice care

If the person you care for becomes more unwell, they may want to be looked after in a hospice or in a palliative care unit of the local hospital.

Their GP, district nurse, specialist palliative care nurse or social worker may suggest a short stay in a hospice or hospital. This may be because they have symptoms that would be easier to control with specialist care. They may be given treatments until symptoms improve and then go back home.

Hospices are generally smaller and quieter than hospitals and work at a much gentler pace. Many have sitting rooms and space for family to stay overnight. Sometimes there is a waiting list to go into a hospice, but this is usually short. If you are not sure about the idea of hospice care, you can ask to visit before making a decision.

Dementia UK’s Admiral Nurse Dementia Helpline can help carers find out what respite and long-term care options are available. Call them on 0800 888 6678 for more information.


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    Advanced cancer and dementia

    If it is not possible to control the cancer, the person you care for will be able to have treatments to manage any symptoms.