The later stages of dementia

3. Treatment and care

Medication

The anti-dementia drug memantine is used to treat severe Alzheimer's disease, and may be used to treat moderate disease in some cases. It can help stabilise the condition and maintain important skills such as feeding and walking, and may improve symptoms of aggression and restlessness. In 2011, memantine was recommended by the National Institute for Health and Clinical Excellence (NICE) as part of NHS care for the treatment of severe Alzheimer's or moderate disease where drugs such as donepezil cannot be taken. Access to the medication may still vary across the country.

Where will the person be cared for?

Many people in the final stages of dementia live in a care home, although some may be in hospital or a hospice and an increasing number live at home with support from health and social care services.

Home - If the person's loved ones feel able to provide care for the person at home, they need to make sure that adequate community nursing and other forms of support are available. This information is available from the GP and social services.

Care homes - Some residential care homes and most nursing homes are prepared to care for people with dementia at the end of their lives. Most residential care homes have access to specialist NHS staff, such as continence nurses and speech and language therapists. Nursing homes also have access to specialist NHS staff but in addition to this also have a qualified nurse on duty 24 hours a day. Some treatments that are available in a hospital (see 'What care or treatment may be offered?' below) may not be available in a care home or nursing home.

Hospital - Most people with dementia who are admitted to hospital during the final stages are actually admitted because of another illness. If this is the case, it is important to make sure that hospital staff are aware of the person's dementia and any usual behaviours and routines. Sharing information about the person and their life is also important.

Alzheimer's Society has a leaflet called This is me which can be used to record this information. When completed, it provides a snapshot of the person with dementia, giving information about them as an individual, such as their specific needs, preferences, likes, dislikes and interests. The leaflet can be downloaded from alzheimers.org.uk/thisisme or ordered by phoning 01628 529240.

Hospices - Hospices offer end of life care when the illness is no longer treatable. End of life care (which is often called 'palliative care') focuses on reducing physical and psychological distress and providing support to the family. Most people in the later stages of dementia require a high level of nursing care, which can be provided at home by the district nursing team or in nursing homes. A few people will have rather more complex symptoms or social problems, which may benefit from specialist input from hospices or palliative home care services. If in doubt, contact your local hospice to discuss the person's needs.

If staff are not used to dealing with someone with dementia, the person's partner or family may need to discuss their needs with the nurse in charge of the ward. Meanwhile, the person with dementia will need reassurance and a calm, simple explanation of what is happening.

What care or treatment may be offered?

If someone in the later stages of dementia becomes seriously ill, there may be a discussion about whether to try to prolong their life or to allow them to die naturally. Only the doctor can make the final decision about whether to give or withhold treatment in the final stages of dementia. However, the views of relatives and of the person with dementia should always be taken into account where possible.

If a lasting power of attorney has been set up, the doctors must consult with the attorney before initiating or withdrawing any treatment. It may also be helpful if the person with dementia has put their wishes in writing at an earlier stage in the illness. See 'What you can do: advance decisions and lasting powers of attorney' below.

End of life treatments may include:

  • resuscitation after a heart attack
  • antibiotic treatment for pneumonia
  • oxygen therapy for shortness of breath.

Resuscitation may be unsuccessful in people in the final stages of dementia, and even when it is successful, there is a risk of causing further brain damage.