Dementia and end of life planning
It can be distressing to think about end of life when you may be living well with dementia, with the support of family and friends. But making plans while you're still able to make decisions can help you let people know your wishes and feelings.
Practical issues
The care plan you were given after diagnosis should be reviewed at least every year and, when you feel able to, you can add your wishes about end of life.
This may include:
- 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
An up-to-date care plan that includes end-of-life plans should be shared by those involved with your care. With your permission, your plan can also be shared with your partner and family.
You’re free to change or withdraw your plan whenever you like.
Other things you may wish to consider include an:
- advance statement
- advance decision
You can review and change an advance statement or an advance decision during a care review.
If you have not already done so, and while you're still able to make decisions, it's important to:
- make a will
- set up a power of attorney
- Managing your affairs and enduring power of attorney
Advance statement
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 is not legally binding, but your attorney (if you have one) and healthcare team will take it into account.
Where you can be cared for
When you're approaching the end of life, you may be offered care in a variety of settings, such as:
- at home
- in a care home
- in a hospice
- in a hospital
The people providing your care should consider 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
- physiotherapists
- 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.
Hospice 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 is not 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.
Support for carers and family
Coming to terms with the impending loss of someone you may have helped care for over a period of 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.