I'm known by many at Atlanta Tech Village, where The Memory Kit is headquartered, as "that guy with the Alzheimer's app." I know this because on a regular basis people come up to me and say, "Excuse me, but aren't you that guy with the Alzheimer's app?" In most cases, they have a loved one with Alzheimer’s and things are getting rough. They want some input, advice, or just to vent. I'm always happy to help if I can, just as I do with friends, people I connect with on social media, and with our customers.
A few months ago I started asking them if their loved one had actually been diagnosed. I kept a little tally in my notebook, and what I discovered was that over 50% had not been referred to a specialist for diagnosis. In two cases their loved ones were living in a memory care community and had never been diagnosed!
When I dug a little deeper, a recurring narrative emerged: In most cases their doctors were telling them that because of their loved one's age (usually 65+) the symptoms were likely an sign of Alzheimer's or dementia. The disease usually progresses slowly. There is no cure, and the progression of the disease can't meaningfully be slowed down. It’s as if "there is nothing we can do, so let's do nothing” might be better than diagnosing-and- prescribing.
I did some research and found out that, as my millennial friends like to say: "This is a thing." A study released in 2015 found that only 45% of people with Alzheimer's were told they had the disease by their physician vs. 90% for the four most common cancers: breast, colorectal, lung and prostate.
Let me get this straight. They don't test or screen for the disease. They don't recommend brain-healthy lifestyle choices that can prevent or slow the progression of the disease. And when people actually have the disease they often don't tell them, or refer them to a specialist for diagnosis.
Two good friends of mine, neurologists Dean and Ayesha Sherzai, recently said that early detection and diagnosis is the one of the greatest gifts you can receive if you do in fact have the disease. And it's true. If you know early enough you can do so many things.
- You can make every possible lifestyle change, and begin taking medications that may help slow the progression of the disease.
- You can make adjustments to your financial plan.
- You might decide to retire early and take some of those trips you always talked about.
- You can spend more time with family and friends.
- You can have an active voice in the plan for your care.
- You might decide to relocate to be closer to family, or to downsize, or move into an assisted living community with memory care resources available if you need them.
Besides these benefits, there are several different forms of dementia, Alzheimer's being one of them, and they are different in terms of symptoms and the way they progress. And in some cases there may be other reasons for the symptoms that are not dementia related. In any case, you have the right to know exactly what you are dealing with.
I believe that to change the way our healthcare system addresses this disease begins with the community. Speaking as a son who lost his mother to the disease, the 100% mortality rate is a great enough burden. Doctors, hospitals and healthcare systems should ease that burden, not make it worse.
I'd like to hear your thoughts, personal stories, and ideas for change.