Dementia and end of life planning
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It can be difficult and distressing to think about end of life when you may be living well with dementia, with the support of family and friends.
But planning ahead, sometimes called advance care planning, is important as it can help you decide:
- how you'd like to be cared for in the final months of your life
- where you'd like to be cared for
- who you'd like to be with you
Making plans while you're still able to make decisions can help you let people know your wishes and feelings while you're still able to.
It can also help them if they ever have to make decisions about your care.
The care plan you were given after diagnosis should be reviewed every year and, when you feel able to, you can add your wishes about end of life.
An up-to-date care plan that includes end of life plans should be shared by those involved with your care, including your partner and family.
Other things you may wish to consider include:
If you haven't already done so, and while you're still able to make decisions, it's important to:
An advance statement is a written statement that sets down your preferences, wishes, beliefs and values regarding your future care.
You can write the statement yourself, with support from relatives, carers or health and social care professionals if needed.
It can include:
- how you want any religious or spiritual beliefs to be reflected in your care
- where you'd like to be cared for – for example, at home or in a care home
- how you like to do things – for example, if you prefer a shower instead of a bath
- music, TV or DVD preferences
An advance statement isn't legally binding, but your attorney (if you have one) and healthcare team will take it into account.
Alzheimer's Society has a template you can use for advance statements in the Planning Ahead booklet (PDF, 2.43Mb)
An advance decision (sometimes known as an advance decision to refuse treatment, or ADRT) is a written statement you can make now to refuse a specific type of treatment in the future.
It's a good idea to discuss the treatments you're deciding to refuse with your doctor or healthcare team so you fully understand the consequences.
You may want to refuse a treatment in some circumstances, but not others. You may also want to refuse a treatment that could potentially keep you alive, known as life-sustaining treatment.
Life-sustaining treatments include:
- cardiopulmonary resuscitation (CPR) – may be used if your heart stops
- ventilation – this may be used if you can't breathe by yourself
- antibiotics – these help your body fight infection
You can't ask for anything that's against the law, such as euthanasia or help to take your own life.
If you decide to refuse life-sustaining treatments in the future, your advance decision needs to be:
- written down
- signed by you
- signed by a witness
Make sure your doctor has a copy of the advance decision to include in your medical notes.
When you're approaching the end of life, you may be offered care in a variety of settings:
- at home
- in a care home
- in a hospice
- in a hospital
The people providing your care should take into account any wishes you have expressed. They should also support your family, carers or other people who are important to you.
The care you receive will include the palliative care you have probably received at an earlier stage of dementia, alongside end of life care.
Palliative care is for anyone diagnosed with a life-limiting illness. It involves making you comfortable by managing pain and other distressing symptoms.
Depending on your needs and where you receive care, the team of healthcare professionals looking after you may include:
- palliative care nurses
- your GP
- community nurses
- hospice staff
- social care staff
- complementary therapists
End of life care at home
You may not need to move away from home to receive care, as end of life and hospice care can be provided at home. To find out what's available locally, ask your GP.
Your GP can arrange for community nurses to provide nursing care at home.
You may also need specialist care from community palliative care nurses, who can also provide practical and emotional support for you and those caring for you.
Social services may also provide services and equipment to help you remain at home.
In a care home
You may already be in a residential or nursing home and wish to stay there, as trained staff are available to look after you day and night.
Your care may involve the local hospital's palliative care team, the local hospice team, your GP, community nurses and district nurses.
Check if the home is accredited by the Gold Standards Framework. This means the home has specially trained staff for end of life care.
Hospices are specialist units run by a team of doctors, nurses, social workers, counsellors and trained volunteers. They're smaller and quieter than hospitals, and feel more like a home.
The care provided in a hospice is free. It also extends to those who are close to the person with dementia, as well as into the bereavement period after the person has died.
It may be possible to attend a hospice as a day patient to benefit from a wider range of services than at home.
Ask your GP or district nurse about a hospice near you.
In a hospital
Some people with dementia are admitted to hospital towards the end of their lives.
This isn't something most people would have wanted as hospitals tend to be noisy, with little facility for relatives to stay for as long as they want to.
But sometimes hospital is the best option. Many hospitals have specialist palliative care teams that work alongside the hospital doctors and nurses.
If the health of the person is deteriorating quickly and they're nearing the end of life, consider applying for the NHS continuing healthcare fast track pathway.
If the person's eligible, an appropriate care and support package can be put in place, usually within 48 hours.
This means the cost of any care at home or in a care home will be covered by the NHS.
Coming to terms with the impending loss of someone you may have helped care for for some time is difficult and upsetting.
Talk to the healthcare professionals about your own concerns and wishes. These may include reassurance that the person's pain is being properly managed or the need to be with them at the end of their life.
After the death of a loved one, you'll experience bereavement in your own way. It's important that you're supported in this process.
Read about coping with bereavement.
Alzheimer's Society has a useful factsheet on end of life care for people with dementia.
Page last reviewed: 08/06/2021
Next review due: 08/06/2024