The economics of Alzheimer's

[TexasHusker]

My goodness what a financial drain this is. Fortunately my dad had plenty of assets, income, and a really good LTC policy.

I would be interested in hearing from the good doctor, DisneySteve, as to how you see this affecting families that come to you. How they manage it all.

Also, are there any drugs/therapies that you see on the horizon? The one that looks promising that is in Phase 3 is aducanumab from Biogen.

https://www.cnbc.com/2016/10/17/new-biogen-drug-stops-memory-loss-in-alzheimers-patients.html

I hate to get too hopeful because of all of the Phase 3 heartbreaks we've had over the last 15 years.

What really makes me optimistic about aducanumab is that Biogen has been negotiating very hard with Neurimmune, the company that originated aducanumab, regarding royalty payments on the drug if/when it goes to market: Apparently, Biogen has negotiated a $50 million one-time payment to Neurimmune, in addition to paying Neurimmune a royalty on sales of 10 percent +/-. This is the second time in a year that Biogen and Neurimmune have renegotiated.

That tells me that the folks at Biogen feel like they may have a big one on their hands and that Phase 3 is going well. But again it's hard to get too hopeful.

There is also talk that this drug could cost patients as much as $25,000 a year for the rest of their lives, so there's a lot to this from an economics standpoint, too.

Steve, what are your thoughts about the present and future on the Alzheimer's front, both the patient care and economic concerns sides?

[disneysteve]

This isn't really something I dealt with much in my practice, and I don't deal with it at all now since I switched to Urgent Care.

I never really had direct contact with the financial side but I did have patients who were caregivers/family members of Alzeheimers patients and I saw how it affected them emotionally and how much stress it put on them.

I know nothing about the drug trials so I can't comment on that.

As for the economic impact, certainly it's huge. Nursing home care isn't cheap. Most people burn through what little resources they have pretty quickly so it moves to government assistance picking up from there. Unlike most "normal" nursing home stays which are relatively short, maybe a couple of years, Alzheimers patients may live for a couple of decades if they are in good health otherwise. The burden to the system is just going to grow and grow over time.

[TexasHusker]

The average lifespan after diagnosis is around 8-10 years. We are in year 6.
My dad has been fit as a fiddle physically, but now I am seeing the disease take over his body as well - stooping when he walks, shuffling his feet, having a hard time getting up and down out of a chair, etc. The amount he has declined in the last 12 months is huge. I will be surprised if he's still living in another 12 months.

[disneysteve]

The average lifespan after diagnosis is around 8-10 years.

But the average nursing home stay is just over 2 years and probably less if you leave out the Alzheimer’s cases. That average is going to keep climbing as more Alzheimer’s patients enter the picture.

[TexasHusker]

But the average nursing home stay is just over 2 years and probably less if you leave out the Alzheimer’s cases. That average is going to keep climbing as more Alzheimer’s patients enter the picture.

Yeah I can see that. The thing is, the memory care and assisted living places they need to be in prior to nursing home are quite expensive too. It's run us about $75K a year for the last 3 years.

[creditcardfree]

My grandfather had Alzheimer's. It's so sad. Food for thought....

Maybe if we can figure out how aluminum (a known neurotoxin) is getting into the brains of Alzheimer's patients (I have theories, but won't go into that here) and figure how to get it out that would be helpful.

Link

Silica seems to help the body excrete the aluminum. How much and when does one need this to prevent/reverse the disease? And who can actually profit on something you can't patent?

[QuarterMillionMan]

I work with the elderly population and I've seen how bad it can get and it scared me to the point that I picked up my own LTC insurance for myself which will cover 3 years of nursing home coverage. I'm 52 and pay $1200 per year for the LTC insurance. The coverage provides a $180 per day policy which is not much but it's better than nothing. $180 per day x 30 days = $5400 per month. A nursing home can easily top $10,000 per month for a nicer facility.

[TexasHusker]

My grandfather had Alzheimer's. It's so sad. Food for thought....

Maybe if we can figure out how aluminum (a known neurotoxin) is getting into the brains of Alzheimer's patients (I have theories, but won't go into that here) and figure how to get it out that would be helpful.

Link

Silica seems to help the body excrete the aluminum. How much and when does one need this to prevent/reverse the disease? And who can actually profit on something you can't patent?

With Alzheimer's Disease, we are all really in the grasping-at-straws stage. There are thousands of theories and potential links, but even after the $ billions spent, there is no viable list of potential causes, nor therapies.

When my dad was first diagnosed, I got emails, texts, and calls from many well-wishers offering a cure that they had heard about. Two pots of coffee a day, drinking virgin olive oil, chocolate bars, berries, coconut milk, pretty much you name it. Of course, none of that has worked.

Medicine has made many advances, but there still is no cure for the common cold. I think the best we can hope for with AD is a preventative immunotherapy. I don't see that the brain can regenerate once it is destroyed, but who knows.

The Biogen drug is aimed at halting - or at least slowing - cognitive impairment, not curing it. Thus, in the future, folks will necessarily need to be tested presumably decades before they are symptomatic, to see if there are changes going on in the brain that preclude AD, and then start them on IV therapy in order to prevent them from developing AD.

This would be a similar concept to treating HIV to prevent it from becoming AIDS.

We will begin hearing results from Phase 3 in as soon as 18 months. But there have been so many Phase 3 abysmal failures in Alzheimer's research, it's hard to get overly excited about the Biogen drug.

[greenskeeper]

I work for a not-for-profit retirement community company.

LTC insurance is something that absolutely everyone who is getting up in age should have.

Alzheimer's (dementia) is truly scary stuff. I've seen residents have a slow decline over the period of years and others that go downhill in months. They all end up in the same wing of our medical building.

What amazes me is how a patient can tell me what happened on March 4th, 1948 but can't remember my name when we speak to each other daily for example.

[Thrif-t]

Ugh I hate this disease. It runs rampant in my DH's family. His maternal grandfather was one of 8 kids, 5 of them ended up with AD; 3 in their late 50's. Grandfather got it too but not till late 80's.

MIL was diagnosed at 65 but I suspect she had it around 60 but we didn't realize. She died 10 years later at 75 having spent 5 years in a nursing home.

FIL was diagnosed soon after MIL died and we are in year 3 with him. He will be 81 next week. He has been fit as a fiddle, still living alone but DH & his sibling both go over daily, at different times of the day and then we each keep him at our houses for the weekend. FIL is insistent he stay in his home and the kids are going along with it. He still knows us, knows our names, but can't remember specifics; what grade kids are in, exact ages etc. He is able to handle all daily tasks you just have to remind him what to do. We bring all his food in, the stove has been unplugged. He also tells the same stories on a loop. It's amazing how he'll finish and start right back at the beginning again over and over. I'm not sure what medicine he's on, Aricept, I think? I'm not sure how much longer he'll be able to live alone. I've seen a decline in the last 6 months.

Going back to MIL, FIL went thru almost everything he had paying for her care, he was just getting to the point where she would need medicaid but she passed. They both had/have good pensions & ss so that helped defray some of the costs. I'm not really privy to FIL finances but I think he would have enough built back up that he could private pay for 2 years of care for himself, and then we could sell the house to pay for more.

Me, I'm learning from history. I've purchased LTC on my DH thru my work plan. I prepaid in 10 years for a policy. I will be done paying on it July 2019. It will provide him 3 years of nursing home care and right now I can't remember the specifics of how much a day? The benefit compounds yearly so that will keep up with inflation. I think at the time I bought it I knew it wouldn't pay 100% but DH will have a pension so part of it can help.

Its hard to think about the future and what I should do. I know from the inlaws everything in DH's name would be fair game for the nursing home. One of my New Year's Resolutions is to get a trust made to shield assets so I'm left with something. DH has a deferred comp plan at work and I could start taking money out of that and rolling into my name, but who knows what is the right thing to do. Maybe I'll get AD?? I'm not planning on me getting it, but that would be my luck. But I can only do so much to protect myself and my family. It is a worry that is always in the back of my mind.

[TexasHusker]

Ugh I hate this disease. It runs rampant in my DH's family. His maternal grandfather was one of 8 kids, 5 of them ended up with AD; 3 in their late 50's. Grandfather got it too but not till late 80's.

MIL was diagnosed at 65 but I suspect she had it around 60 but we didn't realize. She died 10 years later at 75 having spent 5 years in a nursing home.

FIL was diagnosed soon after MIL died and we are in year 3 with him. He will be 81 next week. He has been fit as a fiddle, still living alone but DH & his sibling both go over daily, at different times of the day and then we each keep him at our houses for the weekend. FIL is insistent he stay in his home and the kids are going along with it. He still knows us, knows our names, but can't remember specifics; what grade kids are in, exact ages etc. He is able to handle all daily tasks you just have to remind him what to do. We bring all his food in, the stove has been unplugged. He also tells the same stories on a loop. It's amazing how he'll finish and start right back at the beginning again over and over. I'm not sure what medicine he's on, Aricept, I think? I'm not sure how much longer he'll be able to live alone. I've seen a decline in the last 6 months.

Going back to MIL, FIL went thru almost everything he had paying for her care, he was just getting to the point where she would need medicaid but she passed. They both had/have good pensions & ss so that helped defray some of the costs. I'm not really privy to FIL finances but I think he would have enough built back up that he could private pay for 2 years of care for himself, and then we could sell the house to pay for more.

Me, I'm learning from history. I've purchased LTC on my DH thru my work plan. I prepaid in 10 years for a policy. I will be done paying on it July 2019. It will provide him 3 years of nursing home care and right now I can't remember the specifics of how much a day? The benefit compounds yearly so that will keep up with inflation. I think at the time I bought it I knew it wouldn't pay 100% but DH will have a pension so part of it can help.

Its hard to think about the future and what I should do. I know from the inlaws everything in DH's name would be fair game for the nursing home. One of my New Year's Resolutions is to get a trust made to shield assets so I'm left with something. DH has a deferred comp plan at work and I could start taking money out of that and rolling into my name, but who knows what is the right thing to do. Maybe I'll get AD?? I'm not planning on me getting it, but that would be my luck. But I can only do so much to protect myself and my family. It is a worry that is always in the back of my mind.

A good estate planner/attorney would likely be worth the investment of your time and money?

[bjl584]

My grandmother has dementia. After my grandfather passed she had to be put into assisted living. They took everything. All the money from the sale of their house and all of her social security for the rest of her life. Everything that my grandfather worked for in 90 years was gone in an instant. She is now in her mid 90's and her quality of life is non-existent. It's heartbreaking to see a once fit and sharp woman to decline be being basically bedridden. She doesn't remember my grandfather or their 65 year marriage and she has trouble recognizing her children. She is living back when she was a teenager. She has no real concept of time.

[TexasHusker]

My grandmother has dementia. After my grandfather passed she had to be put into assisted living. They took everything. All the money from the sale of their house and all of her social security for the rest of her life. Everything that my grandfather worked for in 90 years was gone in an instant. She is now in her mid 90's and her quality of life is non-existent. It's heartbreaking to see a once fit and sharp woman to decline be being basically bedridden. She doesn't remember my grandfather or their 65 year marriage and she has trouble recognizing her children. She is living back when she was a teenager. She has no real concept of time.

Yes, a lot (though not all) of this is a bi-product of technology that helps us live longer. Most folks in their 90s have no quality of life. Heck, for most folks in their 80s, it is diminished significantly.

75 is the magic number. Once a person reaches 75, things start deteriorating pretty rapidly. Dementia, Parkinson's, diabetes, stroke, arthritis, cancer, heart disease, old football injuries. If you're 76 and still going strong with a good lifestyle and few issues, you're one of the few.

[greenskeeper]

The key is to stay active if you can.

We've got plenty of folks in their 80s, 90s, 100s still going strong

Heck I've got a resident in assisted living who's 104 and really is still independent, doesn't use a walker, still carves waterfowl sculptures at the wood shop.

[disneysteve]

If you're 76 and still going strong with a good lifestyle and few issues, you're one of the few.

This isn't true at all in my experience, and being a doctor you might think I'd see it from your point of view.

I have lots of patients - definitely not the exceptions - who are 76 and beyond who are doing just fine. Sure they have their issues but you need to realize that the older you are, the less likely you are to have serious problems because if you had them, you would be dead already.

My oldest patient in my practice was 103 when she died. I can't say she was independent but she was still up and around and able to do a lot of things for herself. Another patient came to see me one time because she hurt her arm. She had fallen off the ladder while changing her curtains over from winter to spring. She was 94 at the time. She lived for several more years after that, just as independent as she was then. I had a patient who was diagnosed with bone metastasis from breast cancer - 20 years ago! She is now in her 80s and still 100% independent. My mother is 87 and completely independent. We kind of forced her to stop driving back in November. If not for us, she would still be doing that. My uncle passed away a few months ago. He was 93 and completely independent. In fact, just 2 days earlier he and his kids and grandkids had posted pictures on Facebook from their visit to the local aquarium. No cane. No walker. Just out and about at 93 years old just like you and me.

People aren't just living longer. They're living better. People are staying active and independent far longer than they used to. Primarily women but men too. I've seen men come in to the clinic who I actually questioned because I thought their date of birth was entered incorrectly. They were in their 80s and didn't look older than 60s. We were all shocked by their real ages.