‘They’re totally consumed’: Pennsylvania’s Alzheimer’s and dementia caregivers need more help

Lee Marcuzzi and Joanne Bostjanick, inside their Shaler home. (Photo by Quinn Glabicki)

Caring for someone with Alzheimer’s Disease or another dementia can be a 24/7 job, leaving caregivers emotionally and physically exhausted.

 

by Juliette Rihl, PublicSource

The first time Betty’s husband disappeared, he left their Murrysville house to grab the garbage bin at the end of their driveway and got lost. Luckily, a neighbor spotted him sitting on a wall at the beginning of their housing development, picked him up and brought him home. “I was pretty hysterical,” she recalled.

The second time he disappeared, he became confused and thought someone was trying to kill him. Fearing for his life, he fled the house. After about 45 minutes of searching, the police found him hiding in the shed in their backyard.

In Pennsylvania, half a million people care for a family member or friend living with Alzheimer’s disease or another form of dementia, according to the Alzheimer’s Association, the largest nonprofit funder of Alzheimer’s research in the country. For those caregivers — who are almost always unpaid, often battle their own health issues and have little time for themselves — the stress can be immense. 

Like many people with dementia, Betty’s husband suffers from not just poor memory but symptoms like disorientation, mood swings and “sundowning,” which means experiencing unusual behavior like paranoia or hallucinations in the early evening. He sometimes dumps the meals she prepares in the garbage or asks to be taken to his “other house,” though no such home exists. He has a watch that tracks his movement and a door alarm so Betty knows when he comes and goes. His temperament can shift from one moment to the next, leaving her perpetually anxious and exhausted, waiting for the next incident. “It threatens your sanity,” she said. “Because you don’t know where or when or how.”

Caring for someone with dementia comes at the expense of the caregiver’s own mental and physical wellbeing: Almost a quarter of unpaid Alzheimer’s and dementia caregivers in Pennsylvania reported being depressed, according to the Alzheimer’s Association. Throughout the country, nearly six out of 10 caregivers rated the emotional stress of caregiving as “high or very high.” The pandemic has, predictably, made caregivers’ mental health even worse.

Professional caregiving services are expensive, and many families prefer to keep their loved ones at home, meaning caregiving duties typically fall to family or friends — most often women. A state law passed in June provides those caregivers additional financial support. Yet resources remain thin. 

As the proportion of the U.S. population over age 65 continues to grow, the number of Americans living with Alzheimer’s or dementia is expected to skyrocket, meaning more and more people will shoulder these caregiving duties.

 

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