Resource Guide for Family Caregivers
Palliative care and dementia

The longer we live, the more likely we are to experience dementia. Dementia is a medical diagnosis that describes the deterioration of a person’s intellectual and emotional abilities as well as their ability to reason such that daily function is impaired.

A person with dementia is often cared for at home in the early stages by family or friends. However, as dementia reaches the end stage, this becomes increasingly difficult and the care recipient often has to be moved into a long-term care facility. For this reason, we often do not think about palliative care in the early stages of dementia.

Providing good palliative care in dementia begins early on with:

  • accurate diagnosis and disclosure;
  • patient and family education and support; and,
  • planning for future incapacity by identifying a substitute decision- maker who will respect the wishes of the person when they can no longer speak for themselves.

It may make sense to withdraw unnecessary medications and treatments as feeding and general handling of the dementia patient become more difficult. There is a belief that people with dementia do not feel pain, but this is not true. They just might not communicate pain in ways we are familiar with. Pain must be adequately controlled. If other health problems arise it is important to remember that treatment of these other problems will not alter the underlying dementia and in fact may worsen it.

Decisions about transferring to a hospital must be carefully considered. Even if the person has dementia, it is not uncommon for him or her to experience delirium (e.g., unpredictable levels of consciousness, severe restlessness, and agitation) when unwell or in unfamiliar surroundings. In this state, the person becomes less and less knowledgeable or aware of his or her surroundings. Typically the behaviour gets worse, sleep patterns change, and falls and injuries may occur. Delirium must be carefully assessed and sedating medications may have to be used. The focus must be adequate support and symptom management. When the final stage is reached, comfort, dignity and quality of life are most important.

Care planning should involve the family caregiver, relevant health care providers, and if practical or realistic, the patient. Care planning allows thoughtful discussion to occur before there is a crisis, and helps people to express their clear wishes about the kind of care they wish to have when the person is nearer to death. This will include discussion of where the individual would like to be, such as at home or in a facility; what their attitude is toward resuscitation, for example cardiopulmonary resuscitation (CPR); and what specific kinds of care they wish to have or to avoid.

There is a belief that people with dementia do not feel pain, but this is not true. They just might not communicate pain in ways we are familiar with.