End-of-life and palliative care planning

Dementia is a life-shortening illness

This fact is often not addressed openly. Median survival from diagnosis of Alzheimer's Disease is around 8 to 10 years, with substantial variation. People with dementia die from many causes, with pneumonia and other infections, falls, and the late effects of frailty among the commonest direct causes. Advanced dementia itself is increasingly recognised as a terminal condition requiring palliative care.

Why early conversations matter

Decisions made in advance, while the person has capacity, give the best outcomes:

• Choice about where to be cared for at end of life (home, care home, hospice);
• Preferences for treatment (or its limitation);
• Religious and cultural priorities;
• Funeral preferences;
• Conversations with family about expectations and wishes.

These conversations are often difficult to initiate. A diagnosis of dementia, particularly with the early information about prognosis, is the natural starting point. The conversation does not need to be long; small conversations over time are usually easier than one big conversation.

The formal documents

• Lasting Power of Attorney for health and welfare: allows your attorney to make health decisions on your behalf when you lack capacity, including refusal of life-sustaining treatment if you have authorised this;
• Advance Decision to Refuse Treatment: refuses specific treatments in advance, legally binding under the Mental Capacity Act;
• Advance Care Plan: a broader, less formal record of preferences;
• ReSPECT form: standardised UK form for emergency care preferences, completed with a clinician.

Palliative care

Palliative care is specialist care that focuses on quality of life, symptom control and family support in life-limiting illness. It is not only for the final weeks; it can run alongside other treatment for years. Palliative care in dementia is increasingly recognised and resourced. Services include:

• Specialist palliative care nurses (often Marie Curie or hospice-based);
• Symptom management for pain, agitation, breathlessness;
• Psychological and spiritual support;
• Family bereavement support;
• End-of-life care planning.

Hospice care for people with dementia is more available than many families realise. Marie Curie, Sue Ryder, Macmillan and local hospices provide community palliative care alongside care homes and homes.

Recognising advanced dementia

Features that suggest advanced or end-stage dementia:

• Severely reduced communication, often limited to single words or none;
• Inability to walk without assistance;
• Inability to dress or wash independently;
• Frequent or persistent incontinence;
• Difficulty swallowing, weight loss;
• Recurrent infections, particularly chest infections.

Median survival in advanced dementia is around 1.3 years. Recognising this stage shifts care priorities towards comfort and dignity.

The last weeks and days

Common features in the last weeks and days of dementia:

• Reduced appetite and fluid intake;
• More sleep;
• Less interaction;
• Changes in breathing pattern;
• Reduced consciousness;
• Cool extremities.

Treatment focuses on comfort: pain control (often with sublingual or syringe-driver medications when swallowing is no longer possible), mouth care, careful positioning, calm environment, music, presence. Antibiotic decisions are individualised; aggressive treatment of pneumonia may not be in the person's interest at the very end.

Eating and drinking at end of life

Reduced appetite and difficulty swallowing are normal in the last weeks. Tube feeding is generally not recommended in advanced dementia (see swallowing and weight loss). Comfort feeding (oral food and fluids in the form and quantity the person wants) is preferred. Good mouth care substantially reduces distress.

For families

The end-of-life period is exhausting and emotionally complex. Support resources:

• Marie Curie nurses for overnight support;
• Macmillan and hospice bereavement services;
• Cruse Bereavement Support: 0808 808 1677;
• Faith communities;
• The Alzheimer's Society Dementia Connect Support Line.

Anticipatory grief, the grief for changes that have already happened, is common in dementia caring. Grief that continues after death (often a mixture of loss and relief) is normal and may need specific support.

After death

Practical steps:

• Verify the death (GP, district nurse or paramedic);
• Death certificate from GP or hospital;
• Register the death within 5 days (8 days in Scotland) at the local Register Office;
• Contact funeral director;
• Inform pensions, insurers, bank, utilities (the Tell Us Once service notifies multiple government services).