Palliative Care for People with Dementia

Ann Wyatt
Residential Care Policy and Strategy Consultant

Since 2012, CaringKind has been working with three New York City nursing homes to implement a model of palliative care developed by the Beatitudes Campus in Phoenix, Arizona for people with dementia. Based on our continuing work with Beatitudes and three homes, Cobble Hill Health Center in Brooklyn, and Isabella Geriatric Center and The New Jewish Home in Manhattan, we have developed guidelines for long-term care facilities to assist in the implementation of best practices in palliative care for people with dementia. This document, Palliative Care for People with Dementia: Why Comfort Matters in Long-Term Care, will be available on our website within the next few weeks, and copies will also be distributed to nursing homes throughout New York State as well as to other community partners across the country.
Seventy-five percent of people with Alzheimer's or related dementias will spend time in a nursing home, most typically in the moderate and advanced stages. Alzheimer’s is a progressive, terminal disease; the average time between diagnosis and death is eight to ten years. But it is extremely variable and can last up to 20 years or more. Generally, about 40% of this time is spent in the advanced stages. For these reasons, it is crucial that long-term care providers bring palliative care to their residents who have dementia, and by extension to their families and friends.

Palliative care has a great deal to offer the person with dementia, and it is important to understand that this does not mean giving up. It means taking active steps to discover what comforts someone and even gives them pleasure, and taking steps to prevent or avoid unnecessary pain and suffering before they take hold. The more advanced the dementia, the more helpful palliative care can be, which is why it is so essential that nursing homes adopt a palliative approach.

Sadly, palliation isn’t usually considered often for people with dementia. And even if it is, unless modifications are made in how palliation is offered and delivered, it is unlikely to be effective. As an individual’s dementia advances, his or her actions, rather than words, most likely communicate distress. Unfortunately and all too often, these behavioral expressions are not understood as distress, but rather they are assumed to be the inevitable consequences of the dementia's progression. Palliation cannot occur if the reason or triggers for distress are not known or understood. Anti-psychotic, anti-anxiety and sedative medications do not take away pain or distress, nor do they comfort someone living with dementia who may be hungry, cold, hot, tired, lonely, or frightened by noises or activity in the environment. Effective palliation for people with dementia includes more accurate pain identification and management, liberalized diets, and flexibility in wake/sleep times as well all other daily routines.

Our experience over the last few years working with our three partner nursing homes and Beatitudes has clearly demonstrated that when palliative care is appropriately adapted to the needs of people with dementia, there is enormous benefit — to the person with dementia, to their families and friends, and to facility staff.