We Need to Talk About Dementia

University of Michigan researchers have discovered a paradox when it comes to the diagnosis of Alzheimer’s disease and related disorders: people overestimate their risk, yet they do little to lower their risk!

The experts polled a group of people, each in their 50s and early 60s, asking their thoughts about dementia. The poll revealed that people worry a lot about memory loss! Half the study participants believed they were at high risk of serious memory and cognitive loss due to Alzheimer’s disease or other conditions as they aged. Yet, say the experts, in reality only about 20% of older adults will develop serious memory loss.

Many of the study participants were also doing things to help their brains that really aren’t that helpful, such as taking unproven “brain health supplements.” A much better step would be to discuss their concerns with their doctor! Yet only 5% had ever done so. (Not surprisingly, among participants who had a loved one with dementia, that percentage was higher — yet only slightly, at 10%.)

“While many people in this age range expressed concerns about losing memory, and say they take active steps to prevent it, most haven’t sought advice from medical professionals who could help them understand which steps actually have scientific evidence behind them,” said Dr. Donovan Maust, a geriatric psychiatrist who helped design the poll and analyze the results.

For example, Dr. Maust said, many people fail to realize the brain health benefits of managing their blood pressure and blood sugar, getting enough exercise, improving sleep quality, quitting smoking, and spending more time socializing with others.

Will your doctor tell you?

With so few patients raising the topic of dementia with their doctors, are doctors taking the lead and asking? Studies suggest that patients aren’t the only ones avoiding that conversation! In 2018, the Alzheimer’s Association noted that a full 93% of seniors believe their doctor will bring up the subject of memory loss and suggest a screening — when in fact, fewer than half of doctors routinely do that. 

An earlier study from the Association even revealed that when doctors believe a patient has Alzheimer’s, fewer than half of them tell the patient — or for that matter, family caregivers. What is the reason for this reticence? The Association speculates that there is still a taboo about discussing dementia. Perhaps doctors think they are sparing patients and families bad news.

But this means that patients and families can drift along in a sort of diagnostic limbo, with families thinking their loved one is just experiencing the normal changes of aging. Family increasingly end up making accommodations and excuses for their loved one’s changing abilities and personality.

The Association is trying to change this attitude. For example, they have enlisted the help of people in the early stages of Alzheimer’s to be part of the Alzheimer’s Association’s Early-Stage Advisory Group. “Denial and rationalization are common responses to the early signs and symptoms of Alzheimer’s — it was a part of my experience,” said one group member. “Too often, people experiencing symptoms, or family members seeing them, wait to speak up, even when they know something is wrong. It can be scary, but that is why I’m sharing my personal experience — to illustrate why talking about Alzheimer’s concerns early is so important.”

The advantages of early diagnosis

If a person has concerns about memory changes, the sooner they report this to the doctor, the better. Their symptoms might be due to a treatable cause — perhaps depression, thyroid disease, vitamin deficiencies, dehydration, an infection, or the side effects of medications. (Read “Are Memory Issues a Cause for Concern?” in the Aging Well blog to learn more about that.)

If the doctor suspects there’s a problem, pinpointing the type of dementia will be the next step. Many people mistakenly believe that “dementia” always means Alzheimer’s disease, but there are other types, such as Lewy body dementia, frontotemporal dementia, and dementia caused by brain injury or stroke. The treatments and interventions for each are not the same, so information leads to a better outcome and quality of life.

And for both patient and family, early diagnosis clarifies things. It explains behavior changes and helps both the senior and family understand what has been going on. It allows for the best management of the condition. While Alzheimer’s cannot be cured, the progression of the disease may be slowed by certain lifestyle changes. Early diagnosis gives a family time to plan for the future while the person with dementia can still participate. It gives them the time to carefully create the best possible care plan for when it’s needed.

Today, people with dementia can experience good quality of life through an appropriate living situation and meaningful activities. Being in denial about the diagnosis could keep the person from accessing those resources.

LifeCare Advocates life care managers provide support for people with memory loss and their families, every step of the way. From assessment of an elder’s cognitive function to locating appropriate services, our life care managers support the wellbeing of both elder and family.