You are a psychiatrist and professor at Albert Einstein College of Medicine with a research focus on dementia, public health policy, end of life care, and bioethics education. What led you to write your new book, Dementia Reimagined?
My mother and grandmother both had dementia. I was surprised and humbled to see how little I knew about good care for dementia, even though I am a physician and medical school professor. I hope the book will provide some of the information I wish I’d had.
What are the challenges of caring for someone with dementia? How is our society addressing (or not) these challenges?
To care for someone with dementia, a person needs a lot of education about this complex illness and an enormous amount of patience. This work is often considered unskilled, is low paid, and often there are no benefits. If we want good care for those with dementia, we need to train, pay, and offer benefits—very few caregivers have those advantages today. Although there are many skilled and effective caregivers, overall we’ve done a fairly poor job of making sure that everyone, paid or volunteer, who provides dementia care has the right training and resources to do the job well. That needs to change.
Are there any silver linings to be found in the care of a loved one with dementia?
Many dementia caregivers will say that this is one of the hardest things they’ve ever done—and also one of the most rewarding. Finding a way to offer happiness to someone for whom happiness is in short supply is a gift for both the person with dementia and the caregiver. We need to do more to support that effort.
What advice would you give someone newly diagnosed with dementia? What advice would you give his/her caregivers?
This is really the focus of my book. To offer a very short summary, I’ll note that it is very tough to receive a diagnosis of dementia. We don’t have a cure, and none is likely to arrive in time for someone who has dementia today. But despair is not the only possible response. Most people with dementia are in the early phases, and with the right support and care they can still have a life that contains joy. I would urge both the person with dementia and those who love him or her to get educated about dementia and care options. What would help you stay safely at home, if that’s what you prefer? Are those services available in your community? If not, can you advocate for them? Many state and local governments are trying to include the voices of those with dementia and their caregivers into the way they make policies and provide care. Your voice can be a powerful force for change, even though—and especially because—you have a diagnosis of dementia.
What resources do you recommend to learn more about dementia and caring for someone with dementia?
Most state and local communities have resources and can help you navigate what’s available and see what’s helpful to you. Try the local Alzheimer’s Association—some offer support groups that can be a wonderful source of support and information.
Some faith communities offer strong volunteer services for people with dementia.
Check out local day programs, assisted living facilities and nursing homes before you need them, to get a sense of what you want to have or avoid—they may even be able to refer you to other groups and services.
Mostly, try and push back against the tendency to let dementia isolate you. Reach out. You should not have to hide. We need to help make our communities into places that are inclusive of people with dementia. If you can help make that happen, you’ll help yourself and many others as well.
Connect with Tia Powell, MD
Contact form: https://www.tiapowellmd.com/contact/
Book: Dementia Re-imagined: Building a Life of Joy and Dignity from Beginning to End
Tia Powell, MD, directs the Center for Bioethics and the bioethics masters’ program at Montefiore Health and Albert Einstein College of Medicine. She holds the Trachtenberg chair in bioethics and is Professor of Epidemiology and Psychiatry. Her scholarship focuses on dementia, public policy, LGBT issues, and clinical ethics consultation. She served four years as Executive Director of the New York State Task Force on Life and the Law, New York State’s bioethics commission. She has worked with the National Academies of Science, Engineering and Medicine on multiple expert workgroups related to public policy and aging. Dr Powell was a 2013-14 Health and Aging Policy Fellow, serving as a senior advisor for Health and Human Services (HHS) to help develop federal initiatives related to dementia and ethics. She is a board certified psychiatrist and Fellow of the New York Academy of Medicine, the American Psychiatric Association, and the Hastings Center. Dr. Powell is a graduate of Harvard College and Yale University School of Medicine. Her book, Dementia Re-imagined: Building a Life of Joy and Dignity from Beginning to End, was published by Penguin Random House in April, 2019.