Dementia Reimagined: Q&A with Tia Powell, MD

Tia Powell, MD holds the Trachtenberg chair in Bioethics at Albert Einstein College of Medicine, where she is Professor of Epidemiology and Psychiatry. She directs the Montefiore Einstein Center for Bioethics and the Certificate and Masters Programs in Bioethics. She is recognized for her bioethics scholarship related to dementia, LGBT issues, end-of-life care and health policy. Read her full bio here.

You are an expert in the fields of bioethics, aging, psychiatry and dementia. What inspired you to go into this field and what continues to drive your passion for this work?

I am a psychiatrist who has been working in bioethics for 30 years now. That means I’ve thought a lot about end-of-life care, but what got me working on dementia was losing my mother to the illness and realizing that, even as a medical school professor, I didn’t know what I needed to know to help care for her. So many families across the country face the same issues and struggle through on their own. I’d like to help people connect with the resources that do exist and help figure out what additional ones are needed. Mostly, I’d like people with dementia and those who love them to feel less alone. That’s what really keeps me going.

Besides your professional experience as a bioethicist and physician, you also had personal experience with dementia as a caregiver for your mother. Did your personal experience change your viewpoint on the disease? If so, how?

Doctors always learn from their patients, but being a family member of someone who is ill provides a whole other level of insight, often painful, that doctors may not learn through their formal training. Seeing my mother and her struggles definitely changed the way I think about dementia care. 

Why are the concepts of joy and dignity such important concepts when it comes to dementia?  

Many people are frightened by the idea of dementia — it is the disease that most frightens Americans. If you ask people why, they often say they fear the loss of dignity. I don’t think people with dementia need to lose dignity. I think people with a wide range of symptoms and disabilities can and do demonstrate dignity. I’d like to change the way we see the changes associated with dementia and begin to support people with those challenges rather than shun them. We can make dementia less painful with knowledge we have today, and as part of that, we can think about how to create lives with dementia that contain joy, as every life should. 

People living with the disease or their caregivers may find the concepts of joy and dignity difficult to put into practice. What are some examples of things people can do to ensure a more joyful or dignified life with dementia, for themselves or their loved ones?

A lot of people look at me as if I’ve lost my mind when I talk about joy in dementia! One woman actually asked if I’d ever seen a person with dementia. I understand her confusion and know that she was a loving wife who was incredibly sad to see what her husband was going through, but I saw that there were many things that could bring joy to my mother. I am not saying we should all be delighted about dementia, but that there can and should be joy, even for someone with dementia. Sometimes, actually often, these were only simple things — taking a walk with someone you love, seeing small children happily playing, hearing well-loved music. If we are so busy avoiding people with dementia — and as a society we have been guilty of that — we may forget to do those things that can bring joy into a life with dementia. 

You say that dementia is not only about loss, but also about preserving hope. What tips do you have for staying hopeful when facing dementia?

There are things that can bring people joy and that they can take with them in dementia. Many people retain a love of music, of delicious food, of the comfort of touch. I personally find it hopeful to think about how I might want to live if I develop dementia. What kind of community would I want, and can I start to make that a reality? If for you it would be meaningful to have a lovely garden to visit, can you make that possible? I met a wonderful older gentleman in Canada who has worked very hard to support a dahlia garden at a local nursing home. He enlists the help of the residents and their families and all delight in the magnificent sight of these glorious flowers. It connects him to his community, to the memory of his late wife, and it connects all of them as well. What would be your dahlia garden? What might bring you joy, and what might you do today to help make that possible? 

*Editor’s note, the 2020 Discovery Alzheimer’s Regional Conference has been rescheduled to June 25, 2020. 


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