Memory loss / dementia - progression and treatment

[Sojourner]

My DF is 84 and has been showing signs of mental decline and steadily worsening memory loss for about the past 4-5 years. Just recently, it's seemed to accelerate a bit, to the point where he is now having trouble remembering very familiar things, like streets and other landmarks around the neighborhood where he's lived for over 50 years.

My siblings and I would like for him to see a doctor to get evaluated, find out what the prognosis is, and see what (if any) treatments might be available to slow the deterioration. I feel like if we go ahead and make the appointment for him to see someone, he will (reluctantly) agree. We should have done this several years ago, I know, but DF has always been very "anti-doctor" and we didn't want to upset him by pushing him too hard when the symptoms were much milder. Bad decision, undoubtedly, but the past is the past.

Some questions:
1) What type of specialist would be best for him to see at this point? Neurologist? Geriatrician? Neuropsychologist?
2) Based on your experiences with dementia, what would be some other helpful/good things for my siblings and I to start doing or thinking about at this stage?

 

[iloveyoga]

I'm sorry. I don't have answers for you, we never did get my Dad to the Dr. for a diagnosis. He passed away from lung cancer last June, but he certainly had full blown dementia or AZ, just not diagnosed. Both my Mom and Dad are very anti doctor and Dad never went until he had to go to the ER with a collapsed lung. That was what he wanted and he got his wish.

We did try many things to keep communication open with my siblings, there are six of us. That is my one piece of advice, we tried and kept trying different ways, even though it was hard.

 

[REWahoo]

2) Based on your experiences with dementia, what would be some other helpful/good things for my siblings and I to start doing or thinking about at this stage?

Based on my experience with my dad and one of my sisters-in-law, you need to start thinking now about a suitable memory care residence for him as it is entirely likely he will soon not be able to find his way home and require close supervision.

Sounds like the same mental decline we saw in my SIL who went shopping and was found 36 hours later, out of gas on the side of the road, miles from home. She'd previously become lost for several hours when running an errand and, similar to your dad, absolutely refused to seek medical help. My niece and nephew had to finally resort to some trickery to get her help and into a memory care facility.

Wishing you and your dad all the best.

 

[MichaelB]

Some questions:
1) What type of specialist would be best for him to see at this point? Neurologist? Geriatrician? Neuropsychologist?
2) Based on your experiences with dementia, what would be some other helpful/good things for my siblings and I to start doing or thinking about at this stage?

I helped my mother from her initial diagnosis and early treatment until she moved into an ALF, a total of about 7 years, when my sister got involved in her medics, care. I found a geriatric psychiatrist to be more helpful than a neurologist. The neurologist diagnosed, prescribed, and monitored, but stuck to a broad, high level assessment, and wasn't helpful in dealing with the emotional impact. He also was unconcerned with smaller cognitive declines she clearly suffered but he could not detect. The geriatric psychiatrist tracked and monitored in more detail and was helpful dealing with the psychological impact of AD.

We had lots of sibling issues that were also challenging. Having care plans built with and reviewed by physicians made it easier to gain acceptance among the siblings.

The same week DM was diagnosed she authorized me to manage her finances, and within a year we created a trust and moved her assets there. As her illness progressed she resigned as trustee and left it entirely up to me and one other child (of 5).

One things for sure is early in her illness the financial predators began to show. Her contributions to charities she previously disregarded was concerning, and the local office of a well known financial services company began to visit her at home.

We hired caregivers to help her at home, and this worked for about 3 years. It’s not easy and required lots of direct supervision, but can work.

Edit to add - I agree with REWahoo that looking for a care facility is time well spent.

 

[braumeister]

Based on my experience with my dad and one of my sisters-in-law, you need to start thinking now about a suitable memory care residence for him as it is entirely likely he will soon not be able to find his way home and require close supervision.

I agree. When my mom needed to move to an ALF I didn't realize how fast her dementia was progressing, and it was less than a year until they told me they couldn't handle her anymore and I needed to get her to a memory care place. That turned out to be a challenge, because there were few of them in the area. Finally found a decent place not too far away, but she lasted less than a year after that move as well. Best wishes for a smooth transition.

 

[NeverBored]

This is hard. Probably a neurologist, or start with his internist or PCP if he has one and ask for a referral.

Meanwhile I highly recommend you look at Teepa Snow's website and her model of brain changes to help you and your siblings understand what is going on. Here's the page - note that when you hover over the slides they switch to a different view. One side gives the stage from the person's viewpoint, the other from your viewpoint. So helpful.

Best to all of you.

 

[Chris7]

My parents probably waited too long for the medicines. It seems in order for them to help with quality of life, you have to start dealing with it fairly early.


My Mom has been in a memory unit for about 4 or 5-years. And they should have realistically started 1 to 2-years prior. It was my mom's worst nightmare to develop AZ as a good friend had a few years prior to her. She had become too much for my dad, but guilt kept her in his care. The turning point was when she fell in the closet and he had to call 911 to help get her up and out.


Some places offer units for couples, but I'm sure that gets pretty darn pricey.


Physically, my mom is fine. But she can no longer really communicate and most things needs help with.


Sorry, I know it is difficult.
cd :O)

 

[Tailgate]

Since my DM already has a neurologist for epilepsy, I'm starting there. She (91) was just moved to an ALF. The decline has been rapid. She has no official diagnosis but I think we can get a claim approved for her LTC to payoff. There are numerous Facebook groups that can be helpful. You probably have already check some out. This is the one I just joined.
Dementia Caregivers Support Group. About 40k members. Besides the Teepa Snow site there's a book that others highly recommend titled The 36-Hour Day. Best wishes.

 

[RunningBum]

My mom is now in memory care as of last fall. My siblings who live in the same town took her to a neurologist about 6 years earlier to get diagnosed, and continued to see them a couple times a year. I believe she got some meds to try to slow the progression, and they can also look for other causes which perhaps could be treated. They were also really good with suggestions like doing puzzles to work the brain. They recommended cutting down if not totally cutting out alcohol. They should also be able to recommend what kind of help and supervision he might need.

Meanwhile, the suggestions given here to check out memory care options is good. Perhaps a place where he could progress from independent to dependent to memory care living. To be able to deduct memory care expenses he will need a doctor or nurse statement that he can't do some basic daily functions on his own, or is a danger to himself.

Memory care is expensive. You might also check out Medicaid options for memory care, and when he would qualify, and what requirements they have. I think some may require a year or two at his cost before they accept Medicaid. There should be some free public resources in his state/area that can answer many questions like this. Don't try to have him gift away his assets so that he'll qualify for Medicaid because they will find that and claw that money back.

Get POA over all of his financials ASAP, and maybe get listed as co-owner on his accounts so that you can manage them. You probably want to make it harder for him to access (take away checks and credit cards) so that the scammers don't get hold of him.

Finally, it may get irritating you that you have to repeat things or you hear the same thing over and over. Keep in mind that nothing he does like this is intentional, or his fault. Have patience like you would with a 3 year old in times like this. Then vent with your siblings.

 

[RunningBum]

Some places offer units for couples, but I'm sure that gets pretty darn pricey.

My dad was able to get an independent living studio in the same center as where my mom is in memory care. I'm not sure if it's the same building or a different building but it is close enough for him to visit every day, except for a couple stretches where they were on total COVID lockdown because of a case in the center. OP didn't mention if his mother was still around.

 

[Amethyst]

Part of the progression (or regression, or drain-circling really) is that we have 3 stages of memory storage: immediate memory, short-term memory, and long-term memory.

People with dementia will get to where they have only immediate memory, which lasts only 2 minutes. At the 2-minute mark, your brain pushes the information into short-term memory, where it may or may not make into long-term memory. But the demented person's damaged brain drops the information into the wastebasket instead.

So that's why you can tell them something important, have them nod their head and seem to understand, and then find out 5 minutes later they have absolutely no memory of what was said. That's also why moving a demented person into a new home, often exposes the depth of the disease: suddenly they can't learn their own address or phone number. It will not stick. The move did not "cause" the dementia. It simply exposed it.

My mom is now in memory care as of last fall. My siblings who live in the same town took her to a neurologist about 6 years earlier to get diagnosed, and continued to see them a couple times a year. I believe she got some meds to try to slow the progression, and they can also look for other causes which perhaps could be treated. They were also really good with suggestions like doing puzzles to work the brain. They recommended cutting down if not totally cutting out alcohol. They should also be able to recommend what kind of help and supervision he might need.

Meanwhile, the suggestions given here to check out memory care options is good. Perhaps a place where he could progress from independent to dependent to memory care living. To be able to deduct memory care expenses he will need a doctor or nurse statement that he can't do some basic daily functions on his own, or is a danger to himself.

Memory care is expensive. You might also check out Medicaid options for memory care, and when he would qualify, and what requirements they have. I think some may require a year or two at his cost before they accept Medicaid. There should be some free public resources in his state/area that can answer many questions like this. Don't try to have him gift away his assets so that he'll qualify for Medicaid because they will find that and claw that money back.

Get POA over all of his financials ASAP, and maybe get listed as co-owner on his accounts so that you can manage them. You probably want to make it harder for him to access (take away checks and credit cards) so that the scammers don't get hold of him.

Finally, it may get irritating you that you have to repeat things or you hear the same thing over and over. Keep in mind that nothing he does like this is intentional, or his fault. Have patience like you would with a 3 year old in times like this. Then vent with your siblings.

 

[Koolau]

Having dealt with both parents' dementia, I strongly recommend finding a support group AND any available "Council On Aging" type assistance. You will need to summon all your patience and love. Oh, and find SOME way to "get away" even for just a few hours. God bless you.

 

[Amethyst]

But if you do lose your temper on occasion, don't beat yourself up over it. It is much more irritating to deal with infantile behavior from an adult than it is from a toddler.

You didn't sign up to be a saint or a martyr, no matter how many societal messages you will get along those lines (especially, of course, if you are female).

Finally, it may get irritating you that you have to repeat things or you hear the same thing over and over. Keep in mind that nothing he does like this is intentional, or his fault. Have patience like you would with a 3 year old in times like this. .

 

[WestUniversity]

Some questions:

1) What type of specialist would be best for him to see at this point? Neurologist? Geriatrician? Neuropsychologist?

2) Based on your experiences with dementia, what would be some other helpful/good things for my siblings and I to start doing or thinking about at this stage?

With my parent it was a gerentologist.

Look up a document called “The Global Deterioration Scale”. It will list seven stages of cognitive decline and a list of characteristics of each stage. When you read through each stage one will most likely stick out. There are many variations of this document with various characteristics for each stage

 

[Mo Money]

I recommend a neurologist who will give you practical advice about the progression of your dad's disease. I had a mom with dementia, and the neurologist was good medically, but did not give me a practical explanation of the disease's progression and what I could expect.

A really good technology thing I found to be extraordinarily useful: Nest cams. They bought my mom an extra year or two at home, because my brother and I could monitor mom on the cams. (It also served as a deterrent for caregivers, who knew they were on cam.) We had seven cams, everywhere but the bathrooms.

Finally, get a really good eldercare lawyer to consult with; estate planning is worth every penny in my experience. You need powers of attorney and the assurance that there's a will that has been thought through carefully.

 

[Bamaman]

I recommend a neurologist who will give you practical advice about the progression of your dad's disease. I had a mom with dementia, and the neurologist was good medically, but did not give me a practical explanation of the disease's progression and what I could expect.

Finally, get a really good eldercare lawyer to consult with; estate planning is worth every penny in my experience. You need powers of attorney and the assurance that there's a will that has been thought through carefully.

We went through this with my aunt. You want to get the legal issues settled while they have the decision making skills to do it "their way."

Auntie later told everyone she came in contact with that her nephews kidnapped her and brought her from her perfect home to "this awful" assisted living and later nursing home. She was actually in very nice places in her home town. She lived 3 months short of 100 years old.

 

[Sojourner]

Thanks to all for the very helpful replies, suggestions, and good wishes. DF can still do most basic things on his own, like eating, dressing, showering, shaving, even mowing the lawn until very recently. And he's still capable of holding quite cogent conversations, even though he is much slower in formulating his words than he was 3-4 years ago. So, I'm hopeful we still have some "good" times left before the much more debilitating later stages kick in.

One thing I failed to mention in my OP is that DF has a full-time companion/partner who is about 12 years younger than he is, and she takes wonderful care of him. I expect she will be there for the duration, even though they aren't married. She is a godsend for our family. I'm very hopeful she will be fully on board with everything that my siblings and I feel is best for DF going forward.

 

[Scrapr]

This is a hard road. Mom & Dad both had Alzheimers. My SIL & brother did a bunch to keep them in their home. One thing that helped for a while were 2 drugs. Namenda & Aricept. Probably gave them 6-8 months of better memory. Wish we had started much earlier. Their PCP was a quack & didn't want to have a hard talk with them.

Good luck

 

[Sojourner]

Look up a document called “The Global Deterioration Scale”. It will list seven stages of cognitive decline and a list of characteristics of each stage. When you read through each stage one will most likely stick out. There are many variations of this document with various characteristics for each stage

Thanks for this reference. I looked it up and read the document (on the memoryworks.org site), and my best guess is that DF is just now entering stage 5. If I had to say, I think he was in stage 4 for at least the past two years, maybe 3. Hopefully this will be the case for stage 5, too.

 

[ExFlyBoy5]

Thanks to all for the very helpful replies, suggestions, and good wishes. DF can still do most basic things on his own, like eating, dressing, showering, shaving, even mowing the lawn until very recently. And he's still capable of holding quite cogent conversations, even though he is much slower in formulating his words than he was 3-4 years ago. So, I'm hopeful we still have some "good" times left before the much more debilitating later stages kick in.

One thing I failed to mention in my OP is that DF has a full-time companion/partner who is about 12 years younger than he is, and she takes wonderful care of him. I expect she will be there for the duration, even though they aren't married. She is a godsend for our family. I'm very hopeful she will be fully on board with everything that my siblings and I feel is best for DF going forward.

Lots of good advice here, and I don't have too much to add since I *think* you were already familiar with my parents (and my Mom's issues with dementia) from our couple of happy hour get togethers.

I would just add as others have mentioned is that this is a battle that really can't be won, and that will be very frustrating at times to your DF. He may get angry, sad...hell...the emotions will run the gamut. You will probably see changes that are very "unlike him" and you will need to continually remind yourself that the changes are NOT HIS TO CONTROL. Tell yourself this over and over and over. My biggest issue w/ Mom was that Dad was the primary caretaker and as he too was older couldn't really grasp the changes and wanted to "fix" her which really didn't help matters too much.

I also second the emotional support groups or something similar. This battle should be fought with the assistance of others that are going through it as well. And of course, you still have my #, so feel free to call ANYTIME if you want to chat. Also, we will be in ATL in April, so if COVID isn't crazy...perhaps we can have another happy hour; it's been too long!

 

[Sojourner]

I also second the emotional support groups or something similar. This battle should be fought with the assistance of others that are going through it as well. And of course, you still have my #, so feel free to call ANYTIME if you want to chat. Also, we will be in ATL in April, so if COVID isn't crazy...perhaps we can have another happy hour; it's been too long!

Great to hear from you, ExFlyBoy, and thanks for the suggestions! I'll PM you.

 

[Sunset]

With my parent it was a gerentologist.

Look up a document called “The Global Deterioration Scale”. It will list seven stages of cognitive decline and a list of characteristics of each stage. When you read through each stage one will most likely stick out. There are many variations of this document with various characteristics for each stage

Thanks for posting this.
Looks like I'm a 2.

Seems Dad, which we've noticed the past 9 months has had memory issues is a 4 or even 5 level. Fortunately he is not in denial but nobody hassles him over not remembering so maybe he doesn't notice.

 

[daylatedollarshort]

This might be a good resource - "When I was first at Loma Linda University Medical Center in 2008, our data showed that less than 5 percent of our older patients had dementia. But when we went to communities right next door to Loma Linda, we saw markedly increased rates of dementia and stroke. This huge disparity confirmed the influence that community and lifestyle have on Alzheimer’s. Our patients in Loma Linda, as you know, have very different lifestyles than the average American: they are Seventh-Day Adventists, eat mostly vegetarian meals, exercise regularly, and have strong family and community ties. Based on our clinical work and over 300 scientific papers, we outline a proven program to prevent Alzheimer’s disease and reverse cognitive decline in The Alzheimer’s Solution. We use an anagram in our program called NEURO that defines the multi-faceted approach we take: Nutrition, Exercise, Unwind, Restorative Sleep, and Optimize Mental and Social Activity."
https://www.bluezones.com/2017/09/researchers-say-alzheimers-disease-cases-preventable-find/

Also, dementia is linked to altered microbiomes and there are cheap home tests that can be ordered these days to compare a patient's microbiome to healthy averages. "Your gut microbiome may be linked to dementia, Parkinson’s disease and MS" - https://theconversation.com/your-gu...-to-dementia-parkinsons-disease-and-ms-144367

Somewhat more controversial is the Breseden protocol, but except for the testing, is mostly a can't hurt, might help type of lifestyle improvement program, not too different than the Loma Linda doctors' advice, like getting enough sleep and not being zinc deficient - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4931830/

 

[bloom2708]

He could try a whole food, plant based diet. Fix the gut biome.

At least halt and potentially reverse some of the damage. But, change is difficult for most. Not all.

 

[HarveyS]

...DF has a full-time companion/partner who is about 12 years younger than he is, and she takes wonderful care of him. I expect she will be there for the duration, even though they aren't married. She is a godsend for our family. I'm very hopeful she will be fully on board with everything that my siblings and I feel is best for DF going forward.

Why wouldn't the full-time companion/partner be part of the discussion to determine what is "best for DF going forward"?