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The Hard Truth about Dementia

Feb. 26, 2023, 6:00 AM EST

By Linda Phillips, the director of research and innovation at the Arizona Center on Aging and Mindy J. Fain, co-director of the University of Arizona Center on Aging

Last week Bruce Willis’ family announced he had been diagnosed with frontotemporal dementia. The actor had been struggling with aphasia since at least last spring. Obviously, this was not the life — a loss of independence, and a sense of self — that any of us would wish for ourselves or our loved ones. But for the many families, friends and neighbors who step up as informal caregivers for older adults across the country, Willis’ diagnosis is a reminder of a pervasive, albeit often hidden burden shouldered by millions of Americans. Currently, more than 6.2 million individuals in the U.S. live with some form of dementia. Currently, more than 6.2 million individuals in the U.S. live with some form of dementia. These millions of Americans will all, slowly and over time, become progressively unable to perform even the simplest of tasks on their own. They will all eventually require care from others. In this country, more than 80% of individuals with dementia receive care at home, which is provided by the more than 26 million informal caregivers. Without a doubt, a diagnosis of dementia is devastating for the individual, but we cannot lose sight of the profound and complex ways in which it touches the lives of those expected to provide care. Caregivers are confronted with the difficulties of learning how to give care to a loved one, which entials managing symptoms, navigating the complexities of the health care system, finding resources and taking care of themselves too. Some might think the easy answer is to hire in-home assistance. But while some families — like Willis’ — are resource-blessed, the vast majority are not. And dementia does not discriminate.

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