When Alzheimer’s Strikes Someone You Love
By Gary Small, MD
“I felt so close to Larry and admired him so much, that I had failed to even consider dementia as a possibility—I didn’t want either of us to go through that pain. There are treatments, even cures, for depression, paranoia, and obsessive-compulsive disorder. But we only had symptomatic treatments for dementia that could help for a while. Eventually, every patient got worse and succumbed to the disease … My psyche wouldn’t allow me to consider the worst—that he could literally be losing his mind—even though it was right in front of me. Unconsciously I must have feared that if someone like Larry could get dementia, then so could I.”
— From The Naked Lady Who Stood on Her Head: A Psychiatrist’s Stories of His Most Bizarre Cases
I know that my sense of helplessness about Larry’s illness is shared by many who witness those they care about develop Alzheimer’s disease (AD).
Advances in medical technology have allowed people to live longer. The average American woman can expect to live to the age of 79, while the average man may anticipate living to the age of 72. In addition to these gains in life expectancy, 80 million baby boomers are entering the age of concern, and age is the greatest risk factor for developing dementia. For people aged 65 and older, the risk of developing the disease approaches 10%; for those aged 85 or older, that risk nears 50%. So we’re living longer but not necessarily better—we’re facing an epidemic of AD in the next decade.
Just mentioning the “A” word evokes fear and dread in baby boomers who have seen the illness afflict their parents’ generation. This most common form of age-related mental decline has an insidious onset of symptoms that seem to sneak up on victims so gradually that it’s almost imperceptible. Initially mistaken for normal age-related forgetfulness, the short-term memory lapses slowly become so disruptive that patients can no longer care for themselves. Eventually it not only destroys memory and thinking abilities, but patients undergo a change in personality, often becoming agitated, aggressive, paranoid, and psychotic. Families become unable to care for them at home, and they can end up in long-term care facilities.
The age wave of seniors at risk for AD is not just a U.S. phenomenon; a considerable economic burden augments the emotional and practical challenges we face worldwide. According to the Alzheimer’s Disease International report on the global economic impact of dementia, the estimated worldwide costs in 2010 of both informal care (from unpaid family members and others) and the direct costs of medical and other social care totaled $604 billion. This figure accounts for approximately 1% of the world’s gross domestic product. If caring for dementia were a company, its annual revenue would exceed that of Wal-Mart ($414 billion).
Scientists are searching for more effective treatments, and many of us have focused on developing early detection tools, using brain scans and blood tests so that we may be able to develop a vaccine or a medication that lowers an individual’s future risk or staves off the onset of symptoms. But we don’t yet have an antidementia drug that eradicates the mental symptoms of AD the way an antidepressant may help someone with major depression live a normal life or an antibiotic can cure pneumonia. This lack of a disease-modifying treatment is what accounts for the fear factor that makes it hard for people to face the reality of the diagnosis.
To deal with this coming epidemic, dementia must become a health priority. We need to invest in research to discover more effective treatments. Data from the United Kingdom suggest we need a 30-fold increase in funding to reach parity with cancer research. We also need to overcome our fear of the disease and become proactive in seeking care.
Often patients and families wait until the patient is in the moderate to severe stage of the illness before seeking a doctor’s care. Although current treatments have only temporary effects, they can have a tremendous impact on the lives of patients and their families, reducing the costs of other medical care and keeping patients in their homes, functioning at higher levels for much longer. In my experience, the earlier people get help, the better their overall outcome.
I couldn’t cure my friend’s AD, but I was able to help him with his symptoms. He started medicines early, made plans for his future while he still could, and enjoyed his life while his mental faculties held up. I only wish I could have offered him more. Perhaps the realization of the coming epidemic will motivate us to overcome our fear and denial and invest in a solution.
— Gary Small, MD, is a professor of psychiatry and the Parlow-Solomon Professor on Aging at UCLA and director of the UCLA Center on Aging. He is the author of The Memory Bible and The Naked Lady Who Stood on Her Head: A Psychiatrist’s Stories of His Most Bizarre Cases.