While it is perfectly possible to live well with dementia for any number of years, it is unfortunately still advisable to plan ahead and think about end of life care.
Making these decisions while you or your loved one with dementia is still able to make their choices known will give everyone a sense of peace and help to avoid difficult situations at a later date.
End of life planning 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
Where you can receive end of life care
End of life care can be provided in different settings, depending on your need and your wishes.
End of life care in a care home
If you are already living in a care home, the staff may have specially trained in end of life care. Check if the care home has been accredited by the Gold Standards Framework which shows they are committed to improving the quality of care for all people nearing the end of life, in line with their preferences.
Other healthcare professionals may become involved in your end of life care within the care home, such as hospital palliative care teams, the local hospice team, your GP, community nurses and district nurses.
End of life care in your own home
If you still live in your own home, you don’t necessarily need to leave it to receive end of life care.
Social services may be able to supply services and equipment to your home and local community palliative nurses can visit you to provide the support that you and your family need.
Talk to your GP about if this is an option that is available to you.
End of life care in a hospice
Hospices offer specialist care and support for people living with any terminal illness. The hospice team is made up of people with specialist end of life skills, including doctors, nurses, social workers, volunteers and religious/spiritual advisers.
Hospices provide compassionate care for people in the last phases of incurable disease so that they may live as comfortably as possible.
The care provided in a hospice is free. Ask your GP about hospice care if this is something that you would like to explore.
End of life care in a hospital
While most people don’t choose to receive end of life care in a hospital, sometimes it becomes a necessity. Most hospitals have specialist palliative care teams and they will work alongside the doctors and nurses to ensure that the experience is as comfortable as possible.
If an older person is in hospital and is still possible for them to be discharged and receive end of life care in another setting, you could apply for NHS continuing healthcare.
This means a care package can be put in place quickly and the NHS will pay for the cost of the care, whether that is in a care home or within a person’s own home.
Find out more about NHS continuing healthcare.
Making an advance statement
If you are diagnosed with dementia, you might want to consider making an advanced statement.
An advanced statement is not legally binding, but is a document that contains your general wishes for your care and preferences in the future.
It can contain information such as where you would like to live, your favourite hobbies and interests, what you like to wear and your religious/spiritual beliefs, in case you become unable to express these in the future.
However it can also contain information about your preferences for end of life care – for example, whether you would prefer to die at home, in a hospice or a hospital, and whether you have made an advance decision to refuse treatment.
There is a template advance statement available from the Alzheimer’s Society (PDF, 2.43Mb).
Making an advance decision
An advance decision is a legally-binding written statement in which you state the treatments that you wish to refuse in the future.
You may wish to do this because you may reach a stage where you no longer wish to have treatment that could keep you alive.
Your advance decision would need to be written down, and signed by yourself and a witness. This is a very important decision to make and you should talk to your GP or healthcare team before you do it, to make sure you fully understand the potential consequences of this statement.
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