I think it's high time we talked about a serious problem: too many primary care physicians do not treat their patients with Alzheimer's and dementia, or those who exhibit symptoms, with the same urgency as they do other diseases. Often, even when they see symptoms beginning, they shy away from making that diagnosis or referring the patient to someone else who can.
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.
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.
When my Mom was battling Alzheimer's there was a moment when I realized that a person meeting for her for the first time would not be meeting the person that I knew and loved. The disease had simply taken too much.
It's heartbreaking for anyone caring for a loved one with Alzheimer's or dementia when the disease progresses to that point. As sad as it was to get to that place, I also realized that at some point it would have a profound impact on her care. Molly Gray was a delightfully, sometimes frustratingly, quirky person. So many little things could bother her, or make her happy. And Alzheimer's would amplify her reactions to them to the point where they weren't so "little" anymore. When we needed professional home care, and later memory care, our whole family worried about her comfort. We could could still understand her. We still "got" her. But how in the world could a stranger connect with her?
As it turned out our worries were not unfounded in many situations. Adult day care, home care, hospital stays and rehab centers were disasters.* We felt we couldn't leave Mom's side for a second, and we had to repeatedly educate the people caring for her about her personal preferences and sensitivities. It was frustrating for us, but mainly our hearts were breaking for Mom because she simply could not speak up for herself.
They say that "necessity is the mother of invention" but I think for The Memory Kit pain, frustration and compassion played the larger roles. Our goal in creating the Care Companion and Care Card was to make life more comfortable for people living with Alzheimer's/dementia, and to provide some peace of mind for their families. Both products are designed, with the help of experts, to enable your loved one's caregivers to get to know them and understand their needs when you're not there.
*Not every experience we had with care providers and healthcare professionals was bad. We made a change in Mom's primary care physician to a doctor who can accurately be called an angel, and the team at Sunrise in Beverly Hills was nothing short of amazing. They are a part of our family now.
Flashback to 2014: My mother who has Alzheimer's has been admitted to the hospital for what would ultimately be diagnosed as a severe urinary tract infection. She was scared, confused, and extremely agitated (an understatement). Enter the nurse, who appeared to have no interest in the information we were trying to share with her, which was that her patient had Alzheimer's disease that had progressed to the point where she was easily agitated, often seemed delusional, and was unable to answer very basic questions. Ignoring us, she began asking my mom complex questions about her symptoms, which she couldn't answer and served to make her even more upset. The nurse's response? Repeat the questions at over twice the decibel level. While smiling. The nurse continued to ignore us as we tried to explain that mom's hearing wasn't impaired - she had Alzheimer's. And so it went, during this hospital stay and others we would have.
Over the next few years we would learn that hospitals are woefully unequipped to address the needs of patients with Alzheimer's and dementia. The reason is that non-specialized doctors, nurses and social workers simply don't understand the disease. Why is that? The answer - from this caregiver-survivor's perspective - is that because Alzheimer's is the only disease that is not covered by insurance or medicaid patients never enter the system with a diagnosis of Alzheimer's. They enter the system for some other reason, and Alzheimer's is a "post-it note" on their chart.
If you have a love one with Alzheimer's in the early stage, there are a few things you can do to be prepared for potential hospital stays. Here is my prep list:
I'm sharing our family's experience in the hope that, with a bit of advanced planning, you can ensure that your loved one is more comfortable in the event that a visit to the ER or a hospital stay is necessary.
Care card Blog
If you have a loved one receiving long term care The Care Card can help ensure that their needs and preferences are always met.