End of Life Care Planning

Important Points

  • This page contains factual but potentially upsetting information on end of life
  • It is important to seek support if you feel it would help
  • For further information contact East Dunbartonshire Dementia Network on 0141 775 0433

In the early stages of dementia it is important to Plan for the Future and this should involve appointing a Power of Attorney in case you need help to make decisions in the future.  You might also want to make an Advance Statement about your personal preferences for care as well as set out the types of treatment you would not want doctors to provide at the end of your life. In the past this was referred to as a ‘living will’ or ‘advance directive’.  This is important as it means that in the early stages of dementia you have the opportunity to shape and make choices about the Palliative Care (end of life care) that you may need as the illness progresses. It also enables health care professionals to provide the best person-centred care and treatment they can. Person-centred care is an approach that focuses on the person as an individual.

Most people with dementia die at home or in a care home rather than in a hospice. It remains a critical phase in the lives of people with dementia, their families and those who care for them and should be planned for to make the person as comfortable as possible and adhere to any care decisions they set out previously.

Overview of End Stage Dementia

This is the last part of the long journey that the person with dementia will make.  While each person’s experience is different, by this stage of the illness most people exhibit severe memory disturbances and the physical side of the disease becomes more obvious.  The length of time a person may experience the end stage of the illness can be many years; it is impossible to determine how long.   Particular symptoms include:

  • Severe fragmented memory
  • Limited verbal skills
  • Orientation only to self
  • Appearing to withdraw from the world
  • 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 and 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. This can make the person especially vulnerable to infections such as pneumonia, which can be fatal. Death often occurs as a result of complications arising from the effects of the disease, rather than the disease itself. 

Palliative care for a person with dementia requires a different model of care from that of palliative care for cancer patients. Due to the nature of the later stages of dementia family, friends and carers may need to put across the views and wishes of the person, as they may no longer be able to do this themselves. This is why it is so important to Plan for the Future

End of life care for people with dementia is primarily concerned with making the person as comfortable as possible and attending to any pain or discomfort the person is experiencing. It is also important to ensure the person’s emotional and spiritual needs are met and they receive reassurance and feel safe. Alzheimer Scotland has useful information on Palliative Care and End of life. The Alzheimer Society also has useful information on The Later Stages of Dementia.  

When Someone You Care For Dies

Caring for someone can become a major part of your life. When that person dies, as well as being a huge loss to you personally, it can leave a space in your life that can, at first, be hard to fill. For further information and practical advice for When Someone You Care for Dies.

You can also contact The East Dunbartonshire Dementia Network or Alzheimer Scotland Dementia Helpline (24 hours) 0808 808 3000.