End stage dementia - the dementia journey

Overview

Quality of life and the eventual dying process for people with dementia in the later stages of the disease are arguably neglected areas of dementia care. There is no doubt that for many family members, friends and people with dementia this stage of the illness may be a sad and lonely time.

The illness may last many years and the journey will be an individual experience both for the person with dementia and their families but there are common features if the illness runs its course.

People in the later stage can be described as having

Severe fragmented memory loss. Their verbal skills will be very limited and they will be orientated only to self. The ability to make judgements or solve problems will be lost, and they will have no independent function inside or outside the home. They will need help with personal care and are frequently incontinent.

Dr Barry Reisburg, American Journal of Psychiatry

Other people with dementia may die much earlier in the illness of an unrelated cause.

WHO Definition of Palliative Care

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

  1. provides relief from pain and other distressing symptoms
  2. affirms life and regards dying as a normal process
  3. intends neither to hasten or postpone death
  4. integrates the psychological and spiritual aspects of patient care
  5. offers a support system to help patients live as actively as possible until death
  6. offers a support system to help the family cope during the patients illness and in their own bereavement
  7. uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
  8. will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. From www.who.int

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