People with dementia often live for many years after their diagnosis. The symptoms of dementia are likely to get worse over time, and it’s wise to make plans well in advance of a person's condition deteriorating.
People with an incurable illness such as dementia, may be offered so-called end of life care (or palliative care) so they are able to live as well as possible until their death. End of life care also includes support for family members. Care can be provided at home, in a hospice, a care home, or hospital.
Everyone who has been diagnosed with dementia should have a care plan drawn up with healthcare professionals. End of life care should be a key part of this dementia care plan.
Details of end of life care included in the dementia care plan might include the person with dementia specifying where they would like to die, and how they'd like to be treated. The dementia care plan should also provide some support for carers, who will be grieving around the time of death.
Read about coping with bereavement.
Preferences for end of life care should ideally be discussed and set out soon after a diagnosis of dementia. Actions such as making an advance statement of wishes should be thought about as soon as possible.
The NHS Choices End of Life Planner has detailed information on planning for the end of life, including why it’s important to plan ahead, what to expect, how to prepare for it, and taking care of someone’s wellbeing in the meantime. End of life planning should also consider financial affairs and legal planning.
Care at home for people with advanced dementia
Palliative care services may sometimes be offered in the home, rather than in a hospice building. "Hospice-at-home" services have staff that are usually on call 24 hours a day and can visit people at home.
Your GP can arrange for community palliative care nurses to provide care in the home. Your local authority may also provide social care services and equipment for the home. Read more about care at home.
Hospice care for advanced dementia
Hospices are specialist residential units run by a team of doctors, nurses, social workers, counsellors and trained volunteers. They are smaller and quieter than hospitals and feel more like a home.
Hospices can provide individual care more suited to individuals in a gentler, calmer atmosphere. There is no charge for hospice care, but patients must be referred to a hospice through their GP. Find hospice services near you.
Palliative care in a care home
Palliative care is available in residential care homes. If someone with dementia is already in a residential home, they may want to stay there for their palliative care. This may make them more comfortable and less distressed than having to go into hospital, unless that is necessary.
You should ask if the residential home is accredited by the end of life Gold Standards network, which means that the home has specially trained staff and good links with local GPs.
Read more about care homes and dementia.
Palliative care for dementia as a hospice day patient
If someone who has dementia prefers to remain living at home, they may be able to visit a hospice during the day. This means they can receive the care and support they need without permanently leaving their home.
As a day patient, they will be able to access more services than could be offered if they stayed at home. Such services might include creative and complementary therapies and rehabilitation, as well as nursing and medical care. They will also meet other patients. Hospices often provide transport to and from the hospice.
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