Dementia guide

Dementia and end of life planning

Palliative care at home

Media last reviewed: 11/04/2014

Next review due: 11/04/2016

People with dementia often live for many years after their diagnosis. However, as it is a degenerative condition, it’s wise to make palliative care plans well in advance of someone entering the end of life phase.

End of life care, or palliative care, provides support for people with an incurable illness so they are able to live as well as possible until their death, it also involves 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, according to NICE. Having end of life care covered in the care plan means the person with dementia will hopefully be able to specify where they would like to die and to ensure that they are treated with dignity in the way they would wish. The dementia care plan should also provide some support for carers of people with dementia who will experience feelings of bereavement and grief around the time of death.

The National Institute for Health and Clinical Excellence (NICE) identifies the end of life as a key part of the care plans for a person with dementia. The care plan should enable the person with dementia to die with dignity where they wish, and to support carers during bereavement.

After their diagnosis, a person with dementia may also wish to think about their own preferences for end of life care – for example, by making an advance statement of their wishes.

The NHS Choices End of Life Planner has detailed information on planning for 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

Nowadays, palliative care services are more frequently being offered in people’s homes. Hospice staff are often on-call 24-hours a day and can visit people at home. Your GP can arrange for community palliative care nurses, such as Macmillan, to provide care at home. Your local authority may also provide social care services and equipment to help terminally ill people remain at home. Read more about care at home.

Hospice care

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 more gentle, calm atmosphere. There is no charge for hospice care, but patients must be referred to a hospice through their GP. You can read more about finding a hospice in Carers Direct. You can also find hospice services near you.

Care homes

Palliative care is also available in residential care homes. If someone is already in a residential home, remaining there for palliative care may be their choice, and it 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.

As a day patient

If the person who has dementia prefers to remain 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 moving away from home. As a day patient, they will be able access more services than could be offered if they stayed at home. This includes 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.

Page last reviewed: 19/06/2013

Next review due: 19/06/2015


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