Rethinking the way we care for dementia patients

Take Good Care

She’s an actor who’s played a variety of parts in many New York theaters. She’s directed numerous summer stock productions, served as artistic director for a regional theater, and just a few years ago she was the managing director of one of the leading acting schools in Manhattan.

She’s talented, intelligent, witty, energetic, and fun. And now it’s time to start saying good-bye.

I recently found out that an old friend of mine named Betty was diagnosed with vascular dementia at age 51. As a type 1 diabetic from the age of five, Betty always knew she probably wouldn’t enjoy a long life of good health. So she tore through her youth and middle age like a woman possessed, traveling the world and making friends everywhere she went.

Now she lives in assisted care. Her long-term memory is still somewhat intact. But her short-term memory is fleeting, so she requires constant care. Her husband, Donald, visits her frequently, but he knows that within a year or two his wife will be gone. She might still be alive, but the vibrant companion he spent so many happy years with will be gone.

For caregivers like Donald, this transition is tragic, of course. But Donald is fortunate because he’s talked about Betty’s condition with doctors and assisted care staff. He knows what to expect.

He understands better than many caregivers that advanced dementia is a disease of the body as well as the mind. And that makes a big difference when the time comes for major decisions about care.

When less is more

Care giving has two stages: aggressive and palliative.

If you’re diagnosed with type 2 diabetes, for instance, it’s time for aggressive care. You eat mindfully, exercise regularly, get frequent check ups, and work with your doctor to prevent or manage the health problems that trail that disease.

Terminal cancer patients who are in hospice receive palliative care. No preventive measures are taken. It’s all about reducing pain and providing comfort.

But when caregivers are not informed about the nature of advanced dementia, inappropriate aggressive care is common and can be harmful to the patient.

In a recent study in the New England Journal of Medicine, researchers found that a very large percentage of bedridden dementia patients received aggressive treatments described as “burdensome” when their caregivers didn’t understand advanced dementia. Treatments included emergency room visits, hospitalization, insertion of feeding tubes, and other measures that did more harm than good.

Lead author of the study, Dr. Susan L. Mitchell, told the New York Times, “When family members understood the clinical course of dementia and the poor prognosis, the patients were far less likely to undergo these distressing interventions.”

It’s simple, but it couldn’t be more difficult. The caregiver has to readjust to a new concept of care. As one medical school doctor told the Times, palliative care does not mean less care.

To Your Good Health,
Jenny Thompson

Sources:
“The Clinical Course of Advanced Dementia” New England Journal of Medicine, Vol. 361, No. 16, 10/15/09, content.nejm.org
“Treating Dementia, but Overlooking Its Physical Toll” Tara Parker-Pope, New York Times, 10/20/09, nytimes.com “Chat Transcript: Dr. Oz on Heart Health” Readers Digest, 3/22/07, rd.com