How Palliative Care Can Help People with Dementia and their Family Caregivers

Author: Jay R. Horton, ACHPN, FNP-BC, MPH
December 2011

The onset of Alzheimer’s and other dementias is slow and silent. As a result it is often unnoticed and undiagnosed until small memory or personality changes begin to increase in regularity and intensity.

Symptoms

Dementia affects all aspects of brain function. Short-term memory loss is usually the first symptom. As the disease progresses, however, other kinds of memory losses mount up: forgetting people and places, loosening attachments to close personal relationships, and even loss of self-recognition.

Planning

For you and your loved one who has been diagnosed with dementia, palliative care can help provide the highest possible quality of life at every stage of illness.

Dementia progresses slowly and gradually. Ultimately, it causes the brain to stop functioning. So whenever possible, it is essential to have discussions early and often before people lose the capacity to make decisions about their lives and their medical care.

It is important to keep in mind that while early-stage dementia patients suffer from short-term memory problems, they can, and should, make the decisions that will help guide the kind of care they receive over time. This allows them to have control over their lives as well as in the treatment of the disease. This also goes a long way toward relieving some of the burden for family caregivers.

Family Caregivers

Palliative care is as much about helping families of patients as it is about treating the patients themselves. Palliative care teams can be an invaluable resource for family caregivers who often face tremendous stress on a 24/7 basis.

Unless clear medical directives are made in advance, families often must face wrenching decisions. Palliative care teams can help sort out facts and feelings around these issues.

Because dementia has such a slow onset and progression, deterioration on a day-to-day level is sometimes hard to see and acknowledge. The palliative care team can help caregivers recognize and deal with the challenges posed by the increasing needs of their declining family member. The team can assist in finding paid caregivers to help in the home, or, if home care is no longer feasible, to help arrange for a skilled nursing facility. And highly-trained team members can help patients and families navigate advance care planning and early decisions about medical care.

Jay R. Horton, ACHPN, FNP-BC, MPH is the Clinical Program Manager at The Lilian and Benjamin Hertzberg Palliative Care Institute at the Mount Sinai School of Medicine in New York City.