The Family Legacy I Don't Want: Will I Inherit Dementia?

Researchers at Columbia University Irving Medical Center shared great news this spring for people at high risk for Alzheimer's disease. Science Daily reported in April the discovery of a gene variant that may reduce the odds of developing Alzheimer's disease by up to 70%. The genetic variant may also protect thousands of people in the United States from the disease.

Caghan Kizil, the study's co-leader, told the publication, "Alzheimer's disease may get started with amyloid deposits in the brain, but the disease manifestations are the result of changes after the deposits appear. Our findings suggest that some of these changes occur in the brain's vasculature and that we may be able to develop new types of therapies that mimic the gene's protective effort to prevent or treat the disease."

As we say in Indiana, that's the best news since sliced bread, especially for those of us with a family history of Alzheimer's and dementia.

My great aunt Edith, my maternal grandfather's sister, was a huge mystery. She lived in an expansive brick home in Fort Wayne, Indiana, which her husband, Quincy, built for her. He was born in 1856 and married her in 1926. She was 28.

By the time I arrived, Edith was widowed and had early-onset dementia that came after her husband's death at age 98. We visited her on some holidays, and I never knew what to make of this smiling woman who barely talked. She recognized my grandfather but didn't know the rest of us. My grandmother, a registered nurse, wore her nursing uniform as she "took a shift" for the around-the-clock care Edith required. My brother and I remembered more about our goofy grandma wearing her uniform than we did about visiting a relative. Edith lived in that grand house until she died in 1981, with private at-home care for three decades.

By her death, I was more familiar with the concept of dementia. Her brother, my grandfather, had it and would die two years later. But he didn't require hired nurses because my grandmother, not donning her uniform, cared for him in their home with assistance from my mother. My paternal grandmother died earlier of dementia in 1977, and the last years of her life were difficult.

There is no time that I've not had a living relative with some form of dementia. By chance or coincidence, my family of origin has experienced dementia and similar brain diseases. It's sometimes difficult not to feel that fickle finger of fate directed at me, as both parents, the three grandparents I knew (my paternal grandfather died of heart disease in 1934 when my dad was 4), my grandfather's brother, and my mother's sister all succumbed to various incarnations of the demon dementia.

With the potential unleashed by the discovery in the Columbia University study, let's look at key questions that impact Americans concerned about dementia in their family.

According to the Alzheimer's Association, dementia is an "overall term for a group of symptoms. The characteristic symptoms of dementia are difficulties with memory, language, problem-solving and other thinking skills that affect a person's ability to perform everyday activities."

Someone once said dementia is "not losing your keys but forgetting what keys are for." My mother, who died in 2012 after an increasingly difficult decade with a failing brain, did unusual things. A personal example that comes to mind is that my father sent her a dozen red roses for Valentine's Day. As she had done many times, she removed a vase and kitchen shears to trim and arrange them. She cut off all the roses and put the naked stems in the vase and didn't understand that was wrong. This was heartbreaking for my father. And I am moved to tears thinking about him cleaning up the mess.

There are multiple kinds of dementia, including the following, as noted by the Alzheimer's Association:

• Alzheimer's Disease: Two hallmarks are an accumulation of beta-amyloid protein outside neurons and twisted strands of tau protein inside neurons, plus inflammation and atrophy of brain tissue.
• Cerebrovascular Disease (vascular dementia): Insufficient blood, oxygen or nutrients damage blood vessels in the brain and brain tissue.
• Frontotemporal Degeneration (FTD): Nerve cells in the front and side lobes of the brain die, and the lobes shrink.
• Hippocampal Sclerosis (HS): Shrinkage and hardening of tissue in the brain's hippocampus.
• Lewy Body Disease: Lewy bodies are abnormal clumps of alpha-synuclein in neurons that, when they develop on the brain's cortex, can result in dementia.
• Mixed Pathology: This is when an individual shows brain changes from more than one kind of dementia.
• Parkinson's Disease: Clumps of alpha-synuclein protein appear in a brain area called the substantia nigra, which may degenerate nerve cells that produce dopamine.

The Alzheimer's Association reports that in 2024, nearly 7 million Americans have Alzheimer's, with 73% of that group over the age of 75. Almost two-thirds of Americans with Alzheimer's are women. The World Health Organization reported in 2023 that nearly 55 million people globally have dementia, with 10 million new cases reported each year.

A group known as the Population Reference Bureau, or PRB, notes that the risk rises with age. For example, in 2019, about 3% of adults ages 70 to 74 had dementia, compared with 22% of adults ages 85 to 89 and 33% of adults ages 90 and older. This statistic holds in my family. My father is 94 and began having memory problems about two years ago. Until then, he could beat everyone at "Jeopardy" and win a foursome of a wicked Midwestern card game called euchre with relish.

The answer is maybe. Of course, that's completely unsatisfying, but medicine — and life — is lived as art and science.

A new study, released in November by a coalition between AARP and the University of Washington, offers definitive information on those risk factors that can be addressed. The Alzheimer's Disease Data Initiative (AD Data Initiative) and the Institute for Health Metrics and Evaluation (IHME) at the University of Washington announced the Dementia Risk Reduction Project. This study looks at how factors like smoking, air pollution and diabetes are among risk factors for dementia.

"The goal is to improve health and health equity by identifying the risks that make a difference in dementia. Right now, the risk reduction picture for dementia is not clear, and so targeted action is difficult," said Christopher J.L. Murray, M.D., director of IHME. "From our previous research, we know dementia is the third largest cause of death for individuals 70 years of age and older in the United States; having a clear picture of the risk is essential to taking action."

My paternal grandmother, who died in her mid-80s, did not have access to all the wonderful services and treatment offered today. There were few support groups for caregivers (her daughters), fewer senior centers and activities in the 1960s and '70s, and less understanding of healthy aging. I don't think the term had been coined yet.

But for my parents, there was much more help. My mother was able to take a drug that didn't exist for my grandparents. She benefited from a dementia evaluation at a major public university medical center with practical recommendations for her family. My father attended a caregiving group. One year, a graduate student from Purdue University worked with both my parents on memory aids, including developing a game for my mother that featured family pictures to help her remember.

The bottom line is that we can't know our long-term future today. But the day is coming when science may be able to predict it more accurately and offer better treatments, if not a cure. What we do know are our personal risk factors and what we can control. For me, I'll control the controllable.

Editor’s note: Next Avenue and the author do not offer this piece as medical advice. A patient or advocate should always discuss clinical issues with a medical provider.

Amy McVay Abbott is a retired health care executive who writes about health and aging, caregiving, disability, and occasionally the arts and history. She formerly wrote “A Healthy Way,” syndicated by Senior Wire News Service. Read More