First signs of dementia

My husband has coped w T1D for almost all of his 70 years without any significant consequences or complications. Yes, a medical wonder. But in recent months he has begun to show sign of what may be dementia. I fear making missteps with diagnosis and insurance coverage. He is currently still on employers insurance plan but looking like he’ll need to finally retire from job he loved and that I think helped to keep him healthy this long. So he would move to Medicare. Looking for advise on where/how to begin with diagnosis without jeopardizing medical coverage. he has a long term care insurance plan that has knock out provision for memory care so cautious about that. I am new to Medicare myself so just becoming aware of differences from private care nsurance. Looking for advise from anyone that has gone down this path. Thanks.

Hi Diane @Dmd1953, I hear your concerns and I’ll offer what little help that I can. I too worked many years, and enjoyed working, and retired on the first day of my 70th year. Although I thought the employer’s plan was good and the best way to go, when I retired my wife and I both switched to “Medicare Complete” plans - which is commonly referred to as “Part C”.

The insurance I have been using now for eight years is the AAPR Medicare Complete Choice Plan, PPO - specifically for the area of Florida where I’ve lived for 19 years. Review plans carefully and assure yourself that the doctors of your choice are “in-network” and that medications and equipment are included in the provider formulary and your hospital of choice is also fully covered.

The particular plan I am using has the highest direct Medicare premium [but does not require premium payment from me - yet this plan when considering all co-payments for doctor visits [because of “complications” I regularly see several specialists] and medicine and equipment co-pays and deductibles, my net “out-of-pocket” turns out to by the most cost effective.

Insurance plans differ significantly by state and region, so check carefully - and utilize the expertise of your wealth manager, accountant and a reputable insurance adviser/

Hi, Diane @Dmd1953.

I want to address the issue of “dementia,” first. There are many conditions that can lead to memory difficulties. Some are generally reversible (e.g., pernicious anemia, untreated hypothyroidism, etc.). Other conditions are not reversible, but can be slowed or “halted” for a while. Then there are the conditions that are, indeed, progressive and do not respond well to medical intervention; in such a case the goal is to help the individual, and her/his family, prepare to maximize the quality of the time they have left together.

Now, memory difficulties alone are not enough to make a diagnosis of “dementia.” A diagnosis of dementia is only made when there is objective evidence of memory impairment along with impairment of one (or more) other cognitive ability.

Then there is the issue of “mild cognitive decline.” It shows up in almost everyone over the age of 60 or so, and may or may not herald what will become a progressive and persistent pattern of cognitive decline.

Years ago there was a trend of thought that suggested “all” persons with Type 1 Diabetes would eventually demonstrate “dementia secondary to diabetes.” It was thought that diabetes, by itself, would lead to a progressive pattern of debilitating cognitive decline, or, dementia. But such a diagnosis (to my knowledge) has never made it into the Diagnostic and Statistical Manual of Mental Disorders (or “DSM”).

We are all aware that Alzheimer’s Disease is the most frequently diagnosed of the several dementing disorders. But many are unaware that other dementing disorders include atherosclerotic or “vascular” dementia, Lewy Body dementia, fronto-temporal dementia, Pick’s Disease, and a host of other medical disorders that can affect both memory and other cognitive abilities at the same time (i.e., can cause “dementia”).

Confused?

I thought you might be. My point is this, and it is extremely important - when an individual begins to demonstrate evidence of memory difficulties it is extremely important to identify the cause of the memory disturbance and, then, treat the cause if there is a treatment available. In my years of practice as a neuropsychologist I saw many, many patients whose memory difficulties were due to metabolic disorders - when their metabolic disorders were treated their memory difficulties resolved. I saw others who had developed significant medical disorders and, when their disorders were treated, their memory difficulties were halted (one I remember very distinctly was a 54-year-old woman who had developed atrial fibrillation that caused her to “throw clots” that led to tiny little strokes in the memory areas of her brain - we stopped the “clots,” but her mild memory difficulties proved permanent).

“Dementia” and memory disturbance are very, very complex topics. I could go on about this for days. It is so much more than an issue of “which medicare plan.” Yes, I know that this is an issue for you. But it sounds like your husband has worked valiantly to make a life “in spite” of having T1D. The two of you owe it to yourselves to find out what is causing his memory problems and then work as hard as you can to preserve what you have built together. The longer you delay the more likely it is that his difficulties will grow worse. The quicker you discover what is happening the quicker you can start appropriate treatment and preserve the life you have.

While you are seeking an opinion and treatment, contact AARP about their Medicare plans. Also, talk to people at the Alzheimer’s Association (they deal with and support people who have any form of memory impairment, not just Alzheimer’s). The people at the Alzheimer’s Association will know the ins-and-outs of dealing with Medicare if “dementia” is the issue in your husband’s case.

Don’t just sit there intimidated by “what this might be.” For almost seventy years your husband has been battling diabetes - you know how to do this. Find out what it is and FIGHT BACK! Call his doctor and get the ball rolling. Then call AARP and the Alzheimer’s Association. Don’t let this steal your lives from you!

I hope this helps you put your questions in perspective. And I hope it helps.

Bill

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Bill, Thanks. This Is great info and the kind of guidance I was looking for. Last week when reality started to hit I was very fearful and bumped into this site while feeling overwhelmed and looking for info. My concern wasn’t really about selection of med plans but rather where to even begin with all this without making mistakes. I’d gotten incorrect advice that our insurance wouldn’t cover denentia and now relieved to know we do have coverage. We have consult with his endocrinologist tomorrow so your advice is timely. We live be in a university town with great medical center. We have resource. We are working on this together. I will print out your comments and use to inform discussions as we proceed. Thanks again. Diane.