Is there any early warning system for dementia?

ddenyy · July 15

I am worried about my grandmother and grandfather developing dementia. Although they don't have any clear symptoms yet, they often forget small things, which concerns me. My great grandmother passed away due to dementia, so I am even more worried. The dementia screening tests seem too simple and unreliable, and it feels awkward to suggest going to the hospital for a examination without any symptoms. I want to regularly test at home to detect dementia early. Is there such a system available? I believe that detecting dementia early is the most important thing. I would appreciate any advice and would love to hear detailed similar stories.

H1235 · July 15

Here is a thread where people talk about the early symptoms they noticed with their Lo.

https://alzconnected.org/discussion/68792/early-behaviors-pre-diagnosis-behaviors

Here are some that I experienced with my lo. Very poor decision making and judgement, Denial anything is wrong (anosognosia), change in personality, confusion, trouble with finances, lack of empathy and problems with balance. I have attached a staging tool that may also give you some things to look for. I don’t believe there is any definitive test. I believe if the short test in the doctors office shows problems or if you have noticed concerning symptoms then they would send your LO to a neurologist for longer testing, and maybe an MRI.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

I hope something here is helpful.

harshedbuzz · July 15

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

First— let me extend my sympathy on the passing of your dear great-grandmother.

My question to you is this— if there were some sort of early in-home screening for dementia and you used it regularly on your older relatives— what would you do with that information?

Dementia is an umbrella term that includes a number of conditions that present with memory loss but that have different causes. The common ones are progressive in nature and terminal. There are few treatments available for Alzheimer's that can help with day-to-day function and slow the progression of symptoms (but not the disease process) to some degree for some people for a time.

The newer infusion medications are limited to those in early stages who meet the criteria of Alzheimer's for amyloid proteins found on PET scan or lumbar puncture. Infusions are every 2 weeks and there are also appointments for follow-up testing. Out of pocket costs on Medicare $5300/year. There is a risk of brain bleeds and death. The current medications seem to work best for white men; woman, POC and the very elderly don't seem to see much improvement on the medication.

Getting an evaluation without being flagged by a professional screening, would be difficult. Where I live (a very well-served area medically), getting an appointment at a memory center can take 9-12 months and possibly a referral.

I completely agree that the current in-office screenings— MMSE, MoCA, Mini-cog and SLUMS— are blunt instruments that don't always tease out a cognitive shift especially among those who have considerable cognitive reserves. My own dad was testing in the MCI range 6 months before he died from aspiration pneumonia.

That said, with my dad, I noticed a change in mood, empathy and executive function a couple years before any glitches in memory. It took me a decade to get my dad evaluated for a number of reasons. Initially, I think he had a sense that he was struggling with things that had been easy previously and didn't want to lose his independence. Later he developed anosognosia and was unaware of his cognitive losses. Mom didn't push it because she believed some of his losses were normal aging.

After dad died, my mom admitted that she was glad she didn't know dad had dementia during those 10 years I was badgering her to have him evaluated. For her, ignorance was bliss although she paid a heavy price as they hadn't done any legal paperwork to protect themselves, dad made some terrible financial decisions (he lost $360K during this time and forgot about another account that had $60K in it) and having him as her medical advocate nearly killed her.

If you and other family members are nearby and engaged with them, you'll likely have a better sense of how they're functioning cognitively and can log concerns to share with the doctor should there be a need to. This is what I am doing with my mom who has concerned me of late. She has had some obvious word-finding issues and memory lapses since around Christmas. She did well on the MMSE in-office, but the doctor agreed to do the preliminary tests including bloodwork and an MRI. She did have an exposure to Lyme Disease which may account for some of this. She was treated and her memory isn't as glaringly bad, but I think she's refraining from asking questions. I expect we'll see the memory center early next year and I expect things may be clearer by then.

HB

ddenyy · July 15

https://alzconnected.org/discussion/comment/215904#Comment_215904

Thank you for your comment! I read through the thread. Your writing is very clear. So how did you eventually get the dementia diagnosis? Could you tell me more details? And I can't open the pdf file..

ddenyy · July 15

https://alzconnected.org/discussion/comment/215906#Comment_215906

Thank you very much for sharing your experience.
If dementia is detected early, I believe two things are possible. One is that we can prevent various issues (money, children, etc.) through future life planning. The second is that, as you mentioned, since dementia is an incurable disease and only its progression can be slowed, we can effectively slow its progression. What do you think about this?

harshedbuzz · July 15

The estate planning and POAs should be in place anyway whether there's a diagnosis or not. And the POA/executor/spouse should be looped in in on spending and investments in case there's an accident or other illness that prevents someone from handling the IADL. This is where my mother failed to protect herself— she managed the household finances for their homes while he took care of their investments. She doesn't like to handle money, so she didn't watch what he was doing.

I don't think that dementia can be effectively slowed in terms of progression on a large scale. Fewer than 20% of individuals with dementia qualify for the newest medications. Of those who do see a benefit, it averages a rate of decline of about 27% which translates to 5 months assuming a white male under 85-ish. IMO, that is not a worthwhile benefit in the context of the risks involved, nor the rigorous schedule of dosing and follow-up testing and the expense for many people.

To say the quiet thing aloud, dad's presentation of early-middle stage dementia was painful for him in terms of losses and difficult for us in terms of caring for an agitated and, at times aggressive, PWD that I would not have wished to prolong it at all.

HB

ddenyy · July 15

https://alzconnected.org/discussion/comment/215955#Comment_215955

Thank you very much for sharing what must have been a difficult story. I hope you have only happy days ahead.

H1235 · July 15

https://us.v-cdn.net/6037576/uploads/2C9WFNCB3F4Q/ftd-2btool.pdf

I did the link a bit different not sure if it will work for you. If not you can go to groups there is one for new caregivers that has this listed. You may also find other helpful things there.

I sent a note to my mom’s doctor. I explained all the behaviors I had noticed. The pcp did a very quick test. I think she actually did fine on it, but because of my note the doctor referred her to a neurologist. That appointment was 2 months out. I’ve heard of people waiting much longer. At this appointment she was given a much longer test (sorry I don’t know the name of the test). After the test we met with the doctor and she went over the results. She said she should not drive or live alone. Mom wasn’t happy about this but accepted it coming from a doctor. She suggested we see a lawyer soon. She could not pinpoint the type of dementia and so she referred her to another neurologist. This doctor ordered an mri (I think) and also some bloodwork. She diagnosed vascular dementia. We have done followup visits with the PA every 6 months since then. Mom’s insurance covers it and she is willing. Mom is more willing to go alone with what the doctor says, so we take advantage of that. I’m not sure how much longer we will continue. There is no medication to slow the progression for vascular dementia. Anger has been a difficult symptom and we are currently trying to find a medication that will help. The lawyer suggested a DPOA a medical POA and a living will. I feel like we were lucky they allowed her to make these decisions.

As hb suggested a visit to a lawyer is a good idea regardless of a diagnosis. As far as catching it early? Treatment to slow progression is not available for all types of dementia and even when it is available there can be side effects. Then there is the question of how effective it is and is it worth it or just prolonging the suffering??? Hope this helps.

Is there any early warning system for dementia?

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