Curative vs. Palliative Care for Dementia Patients

Years ago, at a gathering of writers, someone told me I should look into hospice services for my mom. I was rather offended. Apart from her dementia, my mom was pretty healthy and I expected her to live for a long time. But I confess that back then I knew very little about the different models of treatment families can offer their loved ones at any stage of the disease.

Between the Pond and the Woods

The topic came to mind again this week when I came across a research brief on palliative care, which incorporates many ideas used by hospice providers. The article in European Journal of Public Health Advances by Lieve Van den Block — an award-winning research psychologist – suggests that since there is no real cure for Alzheimer’s or dementia, “curative” care alone may not really meet the complex needs of elderly patients. Her work, published by Oxford University Press, doesn’t suggest that we abandon the idea of seeking a cure for dementia. What it asks is that we re-focus our attention to include the range of physical, social, and psychological problems an older person faces — then plan care options so they can choose what makes them most comfortable in the final years of their lives.

Van den Block explains that the term “palliative care” used to refer to mainly to cancer and end of life situations. Now the idea is broadening to include support for patients with all types of life threatening diseases. It is an approach that encompasses the “physical, psychosocial and spiritual problems” that can affect the quality of life of the patient and their family.

At first it may seem that, given all our duties, this question is too complex for us to consider. But as my mother’s state becomes ever more precarious, I ask myself if we took enough time to discuss everything with her so her care would address deeper needs that lie below the surface checklist of her living will.

Hospice is still a scary word for me. It sounds like the end of the road. But the palliative care model uses many of the same ideas without making any judgement about how long the patient is likely to live. It is a patient-centered approach that focuses on quality of life and dignity, patient autonomy, and compassionate care.  My goal now is to learn more about what that would mean in a real life family setting.

Making Sense of Alzheimer’s — A New Online Resource

Americans crave independence. The concept colors our sense of history and our visions of the future. But people with dementia — and their families — often find their independence thwarted by the disease. In time for 4th of July, the Penn Memory Center has launched www.makingsenseofalzheimers.org  a new website with videos, music, and stories that may aid families bewildered by dementia.

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Working with the team developing this site has been a great privilege for me. I’m grateful that they decided to publish a piece I wrote about mediation and its benefits for caregivers. I hope you’ll take a look at the article called “The Struggle for Peace of Mind.” It also features one of my favorite photos of my mom.  

Since the Making Sense of Alzheimer’s site is still in development, I would love to hear any reactions (good or bad!) to the various videos, radio pieces, and stories now online. Please send suggestions about items you’d find helpful, informative, or entertaining as you face the daily challenges of dealing with dementia.

While you take a look at what’s offered, I’m also sending out a wish that your Independence Day experience brings you fireworks, friendship, and new sources of needed strength.