Alzheimers's - Update

imoldernu

imoldernu

Gone but not forgotten
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Study: Alzheimer’s Kills as Many People as Cancer, Heart Disease

A new look, based on updated study.
Lead study author Bryan James of Rush University Medical Center in Chicago and his colleagues studied 2,566 people over the age of 65, with an average age of 78. Within eight years of the study, 1,090 participants had died and a total of 559 of them had developed Alzheimer’s disease.

On average, the participants lived for about four years after an Alzheimer's diagnosis. Autopsies confirmed the presence of Alzheimer’s in 90 percent of those diagnosed.

More than one third of the deaths in the study group were attributable to Alzheimer’s. People ages 75 to 84 were four times more likely to die after being diagnosed with Alzheimer’s, and three times more likely after the age of 85.

Researchers say expanding these findings to current death estimates from the U.S. Centers for Disease Control and Prevention (CDC) means that Alzheimer’s was responsible for 503,400 deaths 2010.

Attempting to identify a single cause of death in the elderly is difficult and doesn’t adequately capture the reality of the process of death, James said.
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My siblings and I have been in denial over our dad's Alzheimer's. It took a few years, and a few crises (wandering episodes and falls) to admit that Dad needed more help. He now has the help he needs in a specific residential memory care setting. A little pricey, but Dad is worth it. He likes it and so do we.

Now that we've admitted it, I've done a lot of reading and realize just how long he has been exhibiting symptoms (at least 5 years, 3 years fairly serious). Can't believe he was driving as long as he did.

The disease is not just "memory loss" as I foolishly understood. There are a host of behavior changes which are hard to accept. Hallucinations, delusions and plain old bad and twisted logic are difficult to deal with.

There's gotta be a way to slow down this damn disease. Gotta be a way.
 
The displayed symptoms seem to vary quite a bit between different people.

Mom spent the last almost two years of her life in a "memory care" assisted living facility. It was pretty nice, but very expensive.

In her case, there didn't seem to be any major delusions or hallucinations.
She would wake up in the middle of the night and assume that since she was awake, it must be time for breakfast, so she got dressed and went to breakfast (just down the hall). They would explain things to her and take her back to bed, but then she would do it again an hour later.

Or she would finish a meal, then walk in the wrong direction from the dining room, realize she was lost, and sit down for a nap until she was found.

Other little things, but similar to those examples. Her memory was generally pretty good for most things, but she had a lot of anxiety about knowing what time of day it was, since she almost never did know.

In general, I would describe her condition as pretty mild. Just a data point, since as I said the spectrum of displayed symptoms is very broad.
 
Alzheimer's appears to be familial on my Dad's side of the family. My grandmother and several of her siblings had clinical signs. Her body was strong, and she lived well into her 90's progressing from dementia to a vegetative state. My father started showing signs in his 70's, and Mom did her best to hide it. Then he started "sundowning" - becoming active in the wee hours of the morning. He insisted people in white coats were coming out of the closet, and he was going to shoot them. She eventually gave me all of his guns which royally pissed him off. He was still driving, and when we visited, he would ask my husband to explain the foot pedals in the car (stick shift at the time). He became hypersexual at one point which was tragic as he had cut off all intimacy with my Mom at least a decade before he started showing signs. He progressed for a number of years until his back gave out and Mom couldn't get him back into the house after a shopping trip. He was over 6 feet tall, and she was barely 5 feet. The ambulance took him to the hospital, and once the Doctors were able to evaluate his mental state, they refused to let her take him back home. He spent his final years in a nursing home totally convinced that he was being held in a military prison because of his knowledge of government secrets (he was retired civil service worker who had spent a great deal of his career at SAC and MAC). Alzheimer's is a very sad disease. And, with the familial history, it's one of the driving forces behind my desire to retire early before I lose my mind. I always had hope that there would be a cure before I reach that point, but I'm not optimistic that it will happen in my lifetime.
 
My mom stayed good humored, never got mean. My dad would sleep in a recliner by the door (they lived in the country) so she couldn't go wandering outside. She became pretty obsessive - started saving little scraps from the newspaper and had them all over - she would spend hours folding a towel, unfold it, and then fold again. She would stop midway going up steps because she would forget how to move. Couldn't remember how to sit. At dinner she would roll her silverware in the napkin and try and eat it. And she would keep saying "I want to go home" even though she was home. We lived in another state and she no longer remembered who I was when we visited. We recognized symptoms at least three years before diagnosis. Her best friend had it about the same time but she got mean and would hit, kick, or bite caretakers. She was kicked out of the first three care centers she went to. It is just a sad, terrible disease.
 
I forgot about the obsessive part. My grandmother was obsessed with money. She walked to the bank every day to ask about her bank balance. She was convinced that they were stealing her blind. All of the tellers knew her and just had her balance in hand when she walked in the door. She got mean too. My cousin had a new baby and agreed to stay with my Grandmother until she was off maternity leave. My Grandmother decided the baby was hers and fought my cousin violently to prove her point. My Grandmother was a tiny women, but she decked a 200+ pound orderly who crossed her once she was finally placed in a nursing home.

My Dad was also obsessed with money. After he passed away, I was going through his workshop and found a few thousand dollars he had squirreled away in assorted hiding places. I think the saddest thing about Alzheimer's was seeing the personality changes - he went from a happy jokester to a hollow shell devoid of warm emotion.
 
For all that have family suffering from this illness, my empathy. Both of my parent's suffered dementia's. Both were elderly when they passed, 92 and 96. Their symptoms were so different. Mom being sweet and loving, just slowly loosing her mind. Dad hiding his illness for many years. Then getting very mean, with bizarre symptoms. His last year was a year of hell, for him and anyone around him. It's easy for family members to just accept their parent's are a little odd, as so many folks try to hide this disease from family members. We watched Mom slowly go through this and our family honestly thought we knew what the disease was. So when Dad started having issues, Dementia was not what we thought was going on.

There are a few treatments to slow down the progression, some to help prevent further issues for specific types, some to help with some of horrible symptoms.

There is some positive news on the subject. Kansas university medical center recently(last year) opened a memory unit to study this disease. I'll attach a news article abut it, sorry there's a short commercial at the beginning. The one Dr. mentions what goodness could come from delaying the onset of the disease.
http://www.kmbc.com/news/health/KU-study-seeks-to-prevent-delay-Alzheimer-s-disease/-/11664032/21751038/-/uasx2bz/-/index.html

Best wishes,
MRG
 
My MIL is 79 and is suffering with dementia. We've found the biggest obstacle to getting her care is the health care privacy law. She denies she needs help and refuses to go to a doctor or check out assisted living facilities. Her doctors won't talk to her daughters. She lies about going to the doctor and claims she's always told she's perfectly fine. It's hard enough to communicate with her because of her hearing disability, but she gets angry anytime someone discusses getting help. We're at a loss of what to do.
 
It seems like the real tragedy is not how many people it kills, but how long the body outlives the mind. The real burden is on the caregivers, and more money should be going to supporting them IMHO.

Amethyst
 
Dash man said:
My MIL is 79 and is suffering with dementia. We've found the biggest obstacle to getting her care is the health care privacy law. She denies she needs help and refuses to go to a doctor or check out assisted living facilities. Her doctors won't talk to her daughters. She lies about going to the doctor and claims she's always told she's perfectly fine. It's hard enough to communicate with her because of her hearing disability, but she gets angry anytime someone discusses getting help. We're at a loss of what to do.
Click to expand...

Wow,
That's a tough one. I saw a similiar instance with a friend. His mom did the same stuff, till she was forced by physical issues(stairs) to go into assisted living. As soon as she got there the staff recognized her issues. Within a week she was in a memory unit.

My father's Dr's ordered a 72 hour evaluation based on his actions. They didn't have the facilities to do it, but after 6 hours they confirmed severe dementia. At that point the POA did kick in.

Suggestions:
1. State social agency's, sometimes they can force someone to be evaluated. Once they are involved, its about the elders care.
2. Elder care attorney, maybe they could help consult with you on possible steps.
3. ALZ.ORG (Alzheimer's site), there's a bunch of good resources there. There are probably suggestions there. While you're mom's situations difficult, I don't think it's uncommon.
4. If you can talk to mom, ask her to draw a clock. Just a circle with numbers. If she's far enough along, she will fail. I leared about this from friend, who's mother went in for a evaluation. Maybe you could use that to open a dialog. (Slim chance)
5. We avoided any compentancy hearings. My sister was part of a friends. She said it was demeaning to the elder, and if unsuccessful, surely would cause more problems.
6. Edit to add. Pick up a copy of 'The 36 Hour Day'. It will belp you understand what mom's going through.


Best wishes,
MRG
 
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MRG said:
Wow,
That's a tough one. I saw a similiar instance with a friend. His mom did the same stuff, till she was forced by physical issues(stairs) to go into assisted living. As soon as she got there the staff recognized her issues. Within a week she was in a memory unit.

My father's Dr's ordered a 72 hour evaluation based on his actions. They didn't have the facilities to do it, but after 6 hours they confirmed severe dementia. At that point the POA did kick in.

Suggestions:
1. State social agency's, sometimes they can force someone to be evaluated. Once they are involved, its about the elders care.
2. Elder care attorney, maybe they could help consult with you on possible steps.
3. ALZ.ORG (Alzheimer's site), there's a bunch of good resources there. There are probably suggestions there. While you're mom's situations difficult, I don't think it's uncommon.
4. If you can talk to mom, ask her to draw a clock. Just a circle with numbers. If she's far enough along, she will fail. I leared about this from friend, who's mother went in for a evaluation. Maybe you could use that to open a dialog. (Slim chance)
5. We avoided any compentancy hearings. My sister was part of a friends. She said it was demeaning to the elder, and if unsuccessful, surely would cause more problems.
6. Edit to add. Pick up a copy of 'The 36 Hour Day'. It will belp you understand what mom's going through.


Best wishes,
MRG
Click to expand...


Thanks for the suggestions. I'll discuss them with my DW.
 
First a question: What is the difference between Dementia and Alzheimers? Is Alzheimers a specific form of dementia?

I think I posted previously that my husband had to get guardianship of my in-laws last year. My father in law had dementia for years - but MIL was his caregiver, with help from us and from my sister in law. It was a non-issue since MIL handled all the finances, FIL was in a wheelchair and not very mobile, etc. The issue came when MIL started developing dementia... and was no longer able to adequately care for FIL. It came to crux over this and that's why we were forced to go to court for a fully contested guardianship hearing. It broke my heart that MIL had to go through that - but it was absolutely necessary to get FIL out of her care. His last few months were much better in a home. He passed last fall.

MIL has the money obsession that others have mentioned. Hiding money, paper bonds, etc so people won't find them. We've suggested a safe or safe deposit box - but she doesn't trust us or anyone. My husband has taken over her bill paying, taxes, etc. My sister in law does day to day care of her. She's still living in her home, and has become frail, so the worry of her wandering off has declined. It's a matter of time till she needs to be in a memory care unit. Probably a matter of months. She will absolutely hate that. She's very angy now, already, that my husband has taken over bill paying and taxes. He sends her the statements and paid bills, after he's reconciled everything but she's still convinced he's stealing. Not a good thing. She blames me for this too. I was very close to her prior and now she hangs up the phone when I call.

Dementia is not pretty.
 
rodi said:
First a question: What is the difference between Dementia and Alzheimers? Is Alzheimers a specific form of dementia?
Click to expand...

Alzheimer's disease is one form of dementia. It is difficult to diagnose, and getting a physician involved as early as possible is important to find the appropriate treatment.
 
Dementia ? Signs, Symptoms, Causes, Tests, Treatment, Care | alz.org

About dementia
Dementia is not a specific disease. It's an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. Alzheimer's disease accounts for 60 to 80 percent of cases. Vascular dementia, which occurs after a stroke, is the second most common dementia type. But there are many other conditions that can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies.
Dementia is often incorrectly referred to as "senility" or "senile dementia," which reflects the formerly widespread but incorrect belief that serious mental decline is a normal part of aging.
Click to expand...

Diagnosis of and statistics about the incidence of Alzheimer's is extraodinarily difficult to come by, even with the results of the study cited in the OP article, for some very logical reasons.
As I measure my own situation with hopes of documenting onset and life event experiences, the most commented item on many of the above posts, is denial, and/or inability of the AZ subject to recognize what is happening.

My belief is that Alzheimer's is not an on/off disease, but one that operates on a continuum... from mild forgetfulness, to the zombie like actions of the later stage sufferer, from nonrecognition to incontinence.

The time frame may be even more difficult to quantify, since in some, the onset and decline is very rapid (a matter of months), while in others the change may happen in a period varying from a year or two to ten or more years.

So, if we measure the occurance of Alzheimer's by diagnosis, what of the persons who are inevitably on the downward slide, but still functioning at a normal level from outward appearance?

Consider that one freedom that we may cherish the most... Independence.... most outwardly exhibited by the right to drive. Who among us would be willing to visit the doctor's office and take a test for the disease, knowing that failing that test, would keep us from driving a car... forever?

Wholly different, from the outside, looking in, and from the inside, looking out.

As a search for a cure continues, it may be even more important to understand the extent of the problem... to define stages and abilities so as to limit the external effects on Society, and to measure the economic impact at all levels... in a world where the elderly population is growing in comparatively quantum leaps.

Just my opinion.
 
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Anyone with these symptoms should get off statins if they haven't already.
 
MichaelB said:
Alzheimer's disease is one form of dementia. It is difficult to diagnose, and getting a physician involved as early as possible is important to find the appropriate treatment.
Click to expand...

Very true. Here's a link to the mobile alz site.
http://m.alz.org

There's lots of helpful information that caregivers, family should have.

There's even local support groups and on line forums. If you look into some of the forums they're very informative, but difficult to read how folks suffer (bring tissues and big boy/girl pants).

One thing that qualified medical folks understand is there's a connection between dementia issues and UTIs(urinary tract infections). What seems like a minor issue for most folks, can bring on sudden bizarre symptoms for someone suffering from dementia. There are probably many more that we didn't learn about.
MRG
 
Dad had Alzheimer's and eventually died as a result of organ failure. Multiple organs, over a period of months. That's the last stage, when the brain can't even keep your body functioning. Not sure what the death certificate showed, but Alzheimer's was the primary cause. I don't recall any bouts of pneumonia or falls. He did pretty well physically for quite a while.
 
M-I-L was diagnosed as Dementia with Lewy bodies (DLB).

Dementia with Lewy bodies (DLB) | Signs, Symptoms, & Diagnosis

Whatever the diagnosis, it's a tough road for all involved. Dementia consumes a lot of care-giving time, so it helps if everyone gets on-board with the diagnosis as soon as possible.

Looking back at how the children were in denial, it developed into an extra-tough situation for some of them. It's a defining moment in your life when a parent turns into your child...
 
After dealing with FIL's issues for the last several years I was even more so grateful that my mother had moved to a CCRC while she was still healthy and capable of taking care of herself. She did live in assisted living for the last six months. FIL didn't want to face that possibility and saw it as losing his independence.

But my mother also had and example with her mother, who did develop severe Alzheimer's and required constant care from another daughter. This was in the 1960's so there weren't nearly the services available now. My mother wanted to make sure that she didn't place the same burden on her children. She succeeded admirably well.

That's the main reason we're moving to a CCRC around the time I'm 70 or so. Some relatives snicker, seeing it as moving ourselves to an Old Folk's Home.

I see it as taking responsibility for ourselves. No one else will.
 
It must be hardwired into people - this refusal to see our own decline as the real "loss of independence" which we all fear and loathe, and instead blame treatments/facilities/caregivers.

Not that I'm letting bad facilities off the hook - there no doubt are places where certain amongst the help are just waiting for the old lady to forget she's wearing a diamond bracelet.

Amethyst

Walt34 said:
She did live in assisted living for the last six months. FIL didn't want to face that possibility and saw it as losing his independence.
Click to expand...
 
This is a topic that hits very close to home for me, as my husband was diagnosed last year with Alzheimer's at the age of 59. It doesn't run in his family, so it was quite a shock, although the signs had been there for a couple years. He was a corporate CFO for several decades and lost his job 3 years ago for reasons that are now very obvious, but were not so obvious at the time. We are now both retired earlier than expected at the ages of 58 and 60. Among many other things, it has really changed the landscape of our upcoming retirement years. I feel like I'm just now getting a handle on how our financial future looks, but there are many questions there that weren't there before - how long will he live, will he need long-term care (very probably), what additional health care costs will be involved? Fortunately, young-age Alzheimer's is fast-tracked for SSDI, and he was able to qualify within 6 weeks of his diagnosis. This gives us a base income to supplement withdrawals from our retirement savings. But I'm a planner, and although I feel fairly OK about our ability to live on the money we have available to us, the future looks like a big fog with so many unknowns. It really puts a different spin on retirement planning. I've talked to an estate attorney and done what I can to put our ducks in a row. Fortunately I've been handling our money and investments for several years now and feel very comfortable with that. Just afraid of the future and not knowing how things will go. Goes to show that no matter how carefully we try to plan for the future, life can suddenly throw a monkey wrench into all our careful planning. At this point I am learning to take things a day at a time, which is against my nature, but overall not a bad way to live your life.
 
lorikmt said:
This is a topic that hits very close to home for me, as my husband was diagnosed last year with Alzheimer's at the age of 59. It doesn't run in his family, so it was quite a shock, although the signs had been there for a couple years. He was a corporate CFO for several decades and lost his job 3 years ago for reasons that are now very obvious, but were not so obvious at the time. We are now both retired earlier than expected at the ages of 58 and 60. Among many other things, it has really changed the landscape of our upcoming retirement years. I feel like I'm just now getting a handle on how our financial future looks, but there are many questions there that weren't there before - how long will he live, will he need long-term care (very probably), what additional health care costs will be involved? Fortunately, young-age Alzheimer's is fast-tracked for SSDI, and he was able to qualify within 6 weeks of his diagnosis. This gives us a base income to supplement withdrawals from our retirement savings. But I'm a planner, and although I feel fairly OK about our ability to live on the money we have available to us, the future looks like a big fog with so many unknowns. It really puts a different spin on retirement planning. I've talked to an estate attorney and done what I can to put our ducks in a row. Fortunately I've been handling our money and investments for several years now and feel very comfortable with that. Just afraid of the future and not knowing how things will go. Goes to show that no matter how carefully we try to plan for the future, life can suddenly throw a monkey wrench into all our careful planning. At this point I am learning to take things a day at a time, which is against my nature, but overall not a bad way to live your life.
Click to expand...


Very tough situation. Thanks for sharing.
I wish you the very best.
 
Turboslacker said:
Very tough situation. Thanks for sharing.
I wish you the very best.
Click to expand...

Very tough indeed. My DF's best friend had to be put in a memory unit prior to 60. Very difficult situation. DF would always bring him a new box of golf balls whenever he could visit. He didn't know what they were, but enjoyed the few memories they brought back.

A couple of idea's that I've seen help folks suffering:
1. Mom always remember her children, grandchildren and a few other memories. My sister got one of those electronic picture frames, filled it with old photos that she knew mom would recognize. It provided calm thoughts for mom, oh look there's Billy, remember him.
2. Mom was a golfer till she could no longer play. She still loved watching the SR. tour, faces, names she recognized. Lee Trevino, helped my mom tremendously.
3. For much of her life we lived in the town the LLWS(Little League World Series) was played in. She didn't understand the game, but she did remember the scenery. That provided many hours of calmer times.
4. There was a recent news show promoting music, that was part of the ill persons life. You could see these ill people light up, hearing music they could identify with.
5. There are support groups, they may help you or other family.

I hope any of these or other simple techniques, can help folks suffering from these terrible diseases.
Best wishes,
MRG
 
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We always hear about "This happened to my parents," but how would a person living alone recognize the signs in themselves? I've always heard "it's not that you can't find the car keys - it's that you've forgotten what the car keys are for" but by that time, you must be pretty far gone. What should send someone to the Dr. for themselves?

Amethyst
 
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