I watched both my parents and two grandparents suffer with dementia. Having a family history increases my risk, but I refuse to live in fear.
- Both of my parents — and two grandparents — suffered from dementia.
- Studies show that having a family history increases my own risk.
I watched his face as he worked, sitting on the couch. His eyes widened and then narrowed as he concentrated, his pencil poised above the crossword grid. He no longer used a pen.
A thin sheen of sweat appeared on his upper lip. He was oblivious to what was going on in the room — the squawking of the television, the smell of burning toast drifting from the kitchen.
Soon, he gave up on the crossword puzzle, and the winter afternoon light from the window fell on his face as he stared into space with a look of terror. Since he'd first started to forget simple things five years prior, his grasp on his memory was loosening at a faster and faster pace. He seemed to sense that he was falling through the air with no parachute into an open abyss.
Watching both of my parents deal with dementia was difficult
This was in 2006, and by February 2008, my dad died of kidney disease. At age 82, my mom became a widow. For the first time since my brother and I had "left the nest" about 33 years before, she was alone. She turned inward for a while. But at our urging, she moved to a one-bedroom apartment in a Florida independent-living facility a year later.
This move forced her into a social setting after sequestering herself with my dad and his undiagnosed dementia. At first, things seemed hopeful as she played bridge and met new people. But after a year, she fell and broke her hip in her bedroom.
Her fall caused her to depend on a walker, and her robust daily walks were no longer possible. Her simple morning routine of getting dressed before coffee and breakfast became a struggle, so we secured an aide to help her manage the mornings.
Soon, she also started to exhibit signs of dementia, and I noticed her initial group of friends in the building no longer had dinner with her. I created a loose-leaf notebook for her with addresses, phone numbers, and photos of grandchildren. It also had instructions for how to use her television, as well as her washer and dryer.
She coped by finding new friends who were more like she was, and her internist prescribed Namenda, a medication used to help treat the symptoms of dementia from Alzheimer's disease, to help combat her encroaching memory loss.
But her short-term memory continued to fail her. For example, when I visited, if I made a 30-minute trip to Target without her, she'd forget I'd been there at all.
Not long after, an unrelenting bout of pneumonia caused her to need oxygen constantly, and she started faltering physically. I was with her when she died on May 14, 2016, just shy of age 91.
My family history of dementia stretches back to my grandparents
Some of this experience was similar to what I went through with my grandparents. In the summer of 1976, as a young married couple, my husband and I flew hurriedly from Atlanta to my paternal grandparents' apartment in South Florida. My parents were in Europe and could not be reached.
I knew my grandfather's memory had been faltering for the past couple of years, but I didn't realize it had gone downhill so quickly. We learned that my 80-year-old grandfather had thrown my 78-year-old grandmother out of bed — and their apartment — the night before. His memory loss had progressed to the point that he didn't know who she was. They'd been married for over 50 years.
He was still driving at the time, so we took away his keys until we could figure out what was happening. We brought him to a nearby medical-imaging center, where a kind doctor did his X-rays. The doctor showed us on his scans that his brain had shrunk and pulled away from his skull. It stunned me. That was the only physical evidence I have ever witnessed of the effects of dementia.
After my grandfather's death a year later from kidney disease — like my father — my grandmother soldiered on. Like my mother, my grandmother had made her husband's well-being her life's focus. She moved back to Queens, New York, to an apartment one floor above where my parents lived. Extended neighborhood walks were part of her daily routine for many years, until she started getting lost on her regular route.
Soon after, in 1986, my parents moved her to a nursing facility near where I lived in Florida. One night shortly after her move, I visited her and realized she wasn't eating or drinking. She also had a prolapsed uterus that was causing pain. I initiated more personalized care for her, and she lived another six years.
Her days consisted of a walking regimen that was legendary in the facility. She walked almost 20 miles total daily. Even though her walks were limited to the inside of the building, she wore out her tennis shoes monthly. In the end, in May 1992, she choked in her sleep, a side effect of advanced Alzheimer's disease.
I may have an increased risk of dementia, but there are things I can do to take action
Most of us understand the near-inescapable sentence our genes bestow on us. When I recount this history of familial dementia to my internist, he tries not to look alarmed. But there are things I can do.
Recent research published in Medical News Today found that certain activities are directly tied to a lower risk of dementia. The findings in this study show that regardless of genetic risk, exercising frequently, participating in household chores, and being social reduce a person's likelihood of developing dementia.
Dr. Robert P. Friedland, a professor in the neurology department at the University of Louisville School of Medicine and a leading researcher in dementia and Alzheimer's disease, offers hope in the form of preventative measures to either forestall or perhaps eliminate this risk.
"People are healthier now than they were a generation or two ago," he said. "Although 50% to 60% of Alzheimer's disease is genetic, it is not inevitable except for early onset Alzheimer's, which happens between the ages of 50 to 60."
He holds that keeping one's immune system from going into a "hyperactive state" can protect against dementia and advocates four key areas for minimizing this risk: diet, exercise, learning, and social outlets.
He emphasizes the importance of gut health in keeping the brain healthy, as well as a generally balanced diet. Friedland also recommended learning a new hobby. "The brain needs stimulation," he said. "Maybe you can't take up air-traffic control," he joked, "but playing guitar or learning to make pottery is a good way to stimulate the brain. The brain is an organ meant for learning, so seek new activities."
Being social is also important, and something that can be combined with remaining physically active. Friedland recommended social sports. Volleyball and tennis are great options.
Personally, I try to stay up to date on research into Alzheimer's and other forms of dementia. I play Wordle, although I think that exercise is more about luck than skill. I eat a balanced diet, and I'm careful to include foods with antioxidant and anti-inflammatory properties.
I attend Orangetheory workout classes regularly and make sure I walk at least 10,000 steps almost every day. I maintain a small freelance writing and editing business, which keeps my mind active where Wordle may fail me. And perhaps most importantly, I stay in touch with the people who mean a lot to me. Hopefully, these preventative activities will keep my mind healthy in the years to come.