Role for Palliative Care in Dementia

Palliative care is treatment intended not to heal, but to relieve symptoms so that the patient feels better. Despite the fact that it is an important part of treatment, especially for people with incurable disorders, palliative care is not well understood by most people, including those who need it. For people with a terminal illness, palliative care is also known as “hospice care.” That’s one reason why some people don’t even want to talk about the possibility of palliative care, even though it doesn’t mean that a patient is “giving up” or resigning himself to terminal illness. So I repeat:  Palliative care is about helping people feel better and providing them a better quality of life. It can be provided throughout the course of the disease along with regular medical treatment.

What is even less well known is that palliative care is available for people with dementia. Currently, 72% of palliative care programs provide care to dementia patients; just 15 years ago only 21% provided care to dementia patients. These programs can help relieve pain, shortness of breath, fatigue, nausea, eating difficulties, sleep problems, and other symptoms. But according to a study published in the November 2010 issue of the Journal of the American Geriatrics Society, despite the availability of palliative care, dementia patients are not receiving the services that could help them out. The obstacles to receiving this type of care include inadequate insurance coverage, expired home health benefits, and lack of information about when palliative care is appropriate and how to access those services.

“While it is heartening to see that most of these [hospice and palliative care] programs provide care for patients with dementia, there are many, many more who need this care than are receiving it. Education and policy efforts should focus on communicating with families and providers about palliative care, supporting caregivers who often are frustrated in their efforts to improve quality of life for a loved one with dementia, and reforming reimbursement structures to provide coverage earlier in the disease when patients have high needs but are not hospice eligible,” said study author Alexia M. Torke, M.D., M.S., assistant professor of medicine and geriatrics at Indiana University School of Medicine. [as reported in ScienceDaily]

People with Alzheimer’s disease and other forms of dementia have a tough road ahead of them. So do their families. We love the idea that dementia patients are finally getting the kind of care that can make their lives a little easier, but we would like to see this become a standard part of dementia care. Why does it have to be so difficult to get palliative care? Isn’t it a basic human right to have the worst of our suffering relieved as much as possible? We fear that this is another case of agism. The elderly in America are generally treated as though they are disposable, so an elderly person with dementia really has no voice.

It’s sad. But it’s something we, as a society, can change. Studies like this are the first step.

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