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Tia Powell MD
Tia Powell MD
Dementia

A Holiday Gift

Helpful care for people with dementia.

The holidays are a time when we think of families coming together, a time for the generations to celebrate, old and young under the same roof. It doesn’t always happen that way. My own father would have turned 97 this week. In his absence, my family has been delighting in his letter to Santa from 1922. He wanted an aeroplane and a toy car, preferring the “bluey” one to the red. Like many others, my family welcomes new generations and marks the passing of the old.

George Dolgikh
holiday gifts
Source: George Dolgikh

In that frame of mind, I was lucky enough to enjoy a conversation with an older friend and colleague, and to appreciate her wisdom. Katie Maslow is a revered social worker and health policy expert on aging and dementia. She has been highly influential in the field, including on my own thoughts.

I asked how she got started working on dementia, and she noted, “I started out working in a nursing home, long ago. If you can believe it, we really didn’t know that most of the people we were trying to care for had dementia. Dementia was not written in the medical chart; the residents’ charts listed physical ailments, but that wasn’t the main reason they were there. It sounds absurd to say it now, but back in the 1970s, there was a general failure to realize that cognitive impairment could stop you from doing necessary activities. There was so much denial, and an underlying belief that all older people were somehow "just confused."

Maslow’s curiosity was piqued. She learned that the new National Institute on Aging (NIA) was getting rolling and went to look for a job. She was invited to take a typing test, not what she was hoping for. She discovered that a friend knew someone working at NIA, who she then went to see. A lucky break, for that turned out to be Zaven Khachaturian, who went on to become known as the father of Alzheimer’s research. She worked her way in; she got a job working on a report for the government, just as Congress was beginning to notice dementia. Today, you can find her name associated with countless studies, consensus statements, reports, and conferences addressing long-term care, and ways to connect older people with cognitive impairment with support services. Her favorite project was a seminal report that came out in 1992 and helped start programs, still in existence, that offer federal grants to states to connect people with local care resources. Those grants formed the backbone for coordinating care for people with dementia in the U.S.

Katie Maslow is not one to rest on her laurels. Last year she co-chaired, with Laura Gitlin of Johns Hopkins, a major summit at NIH, the first ever to focus on research to improve dementia care and support services. The summit was a whopping success, including for its incorporation of speakers, who described their own personal experience of dementia. The clear message was that effective health policy must incorporate the views and preferences of those dealing with dementia.

Maslow focuses on helping people with cognitive decline maintain function and stay involved with their own lives, families, and communities as long as possible. Asked to cite a crucial issue that needs more work, she cited the distrust between those who specialize in pharmacological treatments and those who don’t. There are dementia advocates who think of drugs as only bad, and they are opposed by researchers who see non-pharma approaches as silly and unscientific. It is the people with dementia who suffer from this split. The research Maslow sees as most needed would be hard to design and carry out, but would look at how different types of interventions can help at different stages. She notes, “There are great programs to help people exercise and participate in the community, and that helps maintain function. But if you are too anxious or depressed, you’ll never get there.” She’d love to see the two camps come together to think about individualized programs that would combine different approaches and maximize the chance of maintaining function. You could stretch out the good early years of dementia and limit that last, hardest year and a half. If she were in charge of dementia research funding, that’s where she’d put the money.

Maslow feels the focus on a cure for Alzheimer’s has distracted attention and funding from the problem of helping people and families already affected. She’d like better guidance on ways to support those in the earliest phases of dementia, and she’d like to see a wider understanding of what constitutes good dementia care at the end of life. Those are wise words born of decades of knowledge. And if Katie Maslow got that wish, it would be a pretty great holiday gift for us all.

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About the Author
Tia Powell MD

Tia Powell, MD, directs the Montefiore Einstein Center for Bioethics and is the author of Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End.

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