Planning for the end of life

It is important for people with dementia to make their wishes known regarding any future care and medical treatment throughout their illness but particularly around care towards the end of their life when they may be unable to express those wishes.

If they don’t feel ready to think about the future at this time, getting to know the persons values, wishes and beliefs more generally can help in the future when decisions need to be made on their behalf. As a long-term carer, you are likely to have spent years developing vital knowledge and caring strategies to help you meet the unique needs of the person you care for. Your awareness and sensitivity to the, often, subtle changes in your relative's behaviour, facial expression and body language that can indicate pain or distress make you ideally placed to help paid carers provide appropriate care.

Palliative and end of life care

Palliative care aims to give people reaching the end of their life the best quality care which meets their physical, emotional, spiritual and social needs. Someone can receive palliative care for several years and it may be offered alongside other treatments, especially in the earlier stages of dementia. Any palliative care in place will continue alongside end of life care.

End of life care aims to support someone in the later stages of a life-limiting condition to live as well as possible until they die. At this point, treatment focuses on relieving symptoms . It also aims to support family and carers during this time and after the person dies.

The length of time the person may experience in the end stage of the illness can still be many years. People with dementia differ in the speed with which their abilities deteriorate, therefore it is impossible to determine how long end of life care will continue.

End of life symptoms include:

  • Severe fragmented memory
  • Limited verbal skills
  • Orientation only to self
  • Inability to make judgements
  • Inability to problem solve
  • No independent function
  • A need for help with personal care and continence management.

Later still, the person may enter a stage of total dependence and inactivity where he/she may have difficulty eating and walking, may fail to recognise relatives, friends and familiar objects, have difficulty understanding and interpreting events, may suffer bladder and bowel incontinence, and be confined to a wheelchair or bed. The latter can make the person especially vulnerable to infections such as pneumonia, which can be fatal.

While dementia is a terminal illness, death often occurs as a result of complications arising from the effects of the disease rather than the disease itself. In addition, many older people with dementia have other conditions that tend to increase in incidence with age, such as heart disease, diabetes and cancer. These conditions can also contribute to the person's decline.

End of life care for a person with dementia can involve a number of different professionals working together, including the GP, community nurses, social workers or care home staff.