There is so much concern about getting Alzheimer’s disease or another dementia. Just the other day I sat with a group of 70+ year olds (an age I realize isn’t too far away from mine), and one by one, the majority began to ask me questions, saying, “You worked in dementia, right? What do you think about……….?” Many of the questions aligned around fear of getting Alzheimer’s and what could be done to avoid it. 

Now that I am retired, I realize dementia care hasn’t left my life at all. For 35+ years it was my day job and now it is just a part of life (especially as I get older). I see how pervasive this disease is as the news outlets inform us of yet another celebrity diagnosed and the rumors circulate about a friend or neighbor “who is different now.”

In response to the questions I received at the gathering, I explained that 1 in 3 seniors in the US will die with dementia. Therefore, there is a high risk that at least a couple of us in our sitting circle of six will be diagnosed, and the others will also be impacted simply because they are friends or relatives. Silence for a moment, followed by a lot of “Yeah buts….”  Why do they ask, I wondered, if they don’t really want the answer. 

This pattern is often the same. There are inquiries and then the questioners seem to evade or defend, as if not really wanting to hear an answer. The backing away from the questions seems to take longer than any other part of the conversation. Hmm. What’s that all about?

I suppose their fear grows when the answer they seek is one I can’t provide. Perhaps when they ask, “What can be done to not get dementia,” they want to know there is a clear-cut way to avoid it. When I tell them the unfortunate truth, they retract and protect as if to say, “Why did I ever ask? I don’t want to know. Let’s move on.”

But my (never to be retired) mission to make the world a better place for those living with dementia and for their loved ones won’t let me take their cues to drop the subject. Instead, I continue to share more information despite their veiled objections (earning a party pooper label no doubt).  But I want them to know that while there is no known cure or prevention, there are things we can do to reduce the risk and mitigate the impact. I want to instill some hope and positivity although different than what they expected.

I go on to explain, while there is no cure or prevention at this time for Alzheimer’s disease or other dementias, there are things we can and should do that make a real difference. I shared the following:

• I begin by explaining that our lifestyle does matter.  I describe an emerging area of science called epigenetics. While we can’t control our genes and DNA, we do have some control over how the DNA is expressed. Essentially, our lifestyle choices can have a positive impact on slowing the progression of dementia. 
• On that note, I describe what’s good for our heart like keeping weight and cholesterol low, is also good for our brain. It’s great “medicine” to get a healthy dose of regular physical exercise, cognitive activity, and social stimulation. It’s vital to incorporate these into daily life with activities such as pickleball. In doing so, we are doing our brain good as we build cognitive reserves and natural protections against disease and rapid decline. 
• I impress the importance of not ignoring symptoms. Being forthcoming about memory changes allows physicians to conduct tests to determine if the memory loss/cognitive changes are due to a type of dementia or something else. There are several benefits to testing and early detection including:
  • There are treatable causes of cognitive change such as Vitamin B12 deficiency and delirium. These cognitive changes can resolve when the underlying condition is treated, such as delirium related to an infection.
  • Even if testing reveals a chronic, progressive dementia diagnosis such as Alzheimer’s disease, Lewy body dementia, vascular dementia, or frontotemporal dementia, early detection and management can help slow the progression of the symptoms and help families prepare. It’s helpful to know the specific cause of dementia because each type is unique. Treatment may vary with each and the symptoms and the functional changes are also unique. 
  • Bottom line is early detection, assessment, and intervention matters so if you or a loved one is noticing changes in short-term memory, don’t hide it. Talk to a doctor so they can pursue testing.
• If diagnosed, find a quality dementia specialized medical team (doctors, nurses, occupational, physical and speech therapists) and seek dementia specialized help at home. Many providers are generalists but there are those who go above and beyond in their dementia training. The journey with dementia can be long (up to 8 years on average) so it’s vital to have the most compassionate and specially trained workforce as your partner, every step of the way. 
  When seeking professionals or care at home, ask about the extent and type of their dementia training. Look for a person or group that has earned credentials and/or participated in advanced dementia training, as appropriate for their role.

Well, it didn’t take too long for me to notice the conversation at the gathering ended early for many, right around the time I was the bearer of the bad news – “there is no cure or foolproof way to prevent dementia.” But a few stayed with it, listening and taking notes on the above. These few followed up with questions indicative of their ability to look this disease straight in the eye and challenge it, if ever called upon.

But for many, the fear of dementia was just too overwhelming to face, so pushing the subject away seemed to be their choice and coping mechanism at that moment. I hope something penetrates because every ounce of prevention is worth a pound of cure. I also take solace in knowing they know how to reach me in the event the atmosphere was the biggest barrier to continuing the conversation about dementia, and not their fear.

In closing...

Next time I am at a party, and the dementia topic comes up (and it will), would I do anything different? I doubt it. I believe every time we talk about dementia we grow knowledge, strength, and resilience.

Advocacy doesn’t have to be grandiose to be effective. We can destigmatize and fight dementia by talking openly, listening, guiding, and supporting, whenever and wherever the topic comes up. Fingers crossed some helpful seeds were planted at this everyday gathering, and I hope there are circles of communication and support occurring organically everywhere.

I encourage us all to continue to talk about dementia. After all, what’s scarier?  Consuming, processing and responding to the facts and realities or ignoring a relentless, insidious disease that will take victims, especially if left to run wild?

Ignorance is bliss or dangerous? I leave that to you to decide.
 

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Originally published August 3, 2026.

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