The Next Plague: Alzheimer’s

In the 1970s and 1980s, a plague called AIDS swept through this country. Like a medieval scourge it was mysterious, incurable, and ruthless as it killed those who were far too young to die.

Now, baby-boomers have reason to fear a new scourge: It won’t cut them down in their youth, but if they dodge heart disease and beat cancer they may find themselves trapped in their bodies, watching their minds dissolve.

Did you know that a woman who is now 65 stands a 20% chance of dying of Alzheimer’s? (See Michael Kinsley’s essay in the New Yorker.)

On Bloomberg View Matthew C. Klein has put together a booklet of “visual data” titled: “How Americans Die.” These stunning interactive graphs will startle you. For instance, were you aware that suicide has recently become the leading cause of violent death in the U.S.?

But it is the pages devoted to Alzheimer’s here  and here that stopped me in my tracks.
I turns out that about 40% of the increase in Medicare spending since 2011 can be attributed to greater spending on Alzheimer’s treatment.(We don’t have reliable data on Alzheimer’s spending before that.) And that number is bound to climb.)

The Boomers will be the second generation to die of dementia, but the first to see it coming. 

These charts are terrifying but important. We need to begin thinking about how to cope with Alzheimer’s. Here, The Mayo Clinic outlines “What is On the Horizon for Alzheimer’s.

I’m not optimistic about a cure anytime in the foreseeable future. But we definitely need to think about how to care for the many who will be suffering from this dreadful disease.

29 thoughts on “The Next Plague: Alzheimer’s

  1. We are not ready for this epidemic. Agree that pumping huge amounts of $ into cause or cure is not the answer in the near term. The third “c” (after cause and cure) is care and that is what we need to focus on. Thanks

  2. Rick–

    Thanks much.

    I agree, we’re not going to find cause or cure anytime soon.

    The money that we have pumped into breast cancer has saved very few lives. (In the U.S. more women per 100,000 die of breast cancer today than back in 1970 when we declared the war on cancer. See Clifton Leaf’s book.)

    And Alzheimer’s is a disease that attacks the brain. We know so little about the brain: far more complicated.

    Some people talk about allowing physician-assisted suicide for Alzheimer’s patients.I am not opposed to this.

    But evidence show that in countries where PA suicide is allowed, many patients change their minds a few months after asking for it .

    It is very, very hard for most people to choose death. If they have been clinically depressed throughout most of their lives, they are much more likely to choose this option.
    But otherwise, No.

    What can we do for them?

    My best ideas:

    1st: we should not depend on families to care for A’s victims. . For the care-giver watching a loved-one die of Alzhheimer’s is almost as bad as dying of Alzheimer’s.

    Screaming fights are not unusual as the patient demands something that the loving care-giver either can’t or won’t provide. (In late stage, an A patient is like a 2 year who is who is not getting what he wants, And a 50-70- year old care-giver is totally worn out. .)

    Ideally, Alzheimer’s patients would be cared for in serene places (preferably in the country, where they are surrounded by nature), These should be-places where well-paid professionals working on relatively short shifts can provide kind, calm care, offering meds, as needed, to reduce anxiety, anger and fear.

    How could we finance this?

    100% inheritance tax would help. Given a choice, I think that most children who have ever dealt with a parent suffering form Alzheimer’s would happily give up the money if their parent received kind care in the situation I describe–especially if the alternative is taking care of the parent themselves.

    None of us know which of our parents will develop this disease. But we do know that, going forward, more and
    more baby-boomers will be diagnosed with senile dementia..

    This is why I have some hope that wealthy people in the Gen X and Gen Y generations might realize that it would be in their interest to let the govt’t raise the inheritance tax as long as the money was ear-marked for this purpose.. (Probably not raise inheritance taxes to 100%–but perhaps 80% over $1.5 million and 90% over $3 million.
    That would help.

    The other thing that baby-boomers themselves can do is to keep whatever assets they have as they age (rather than trying to transfer their assts to heirs as a part of “estate planning” )

    We should explain to our heirs that, if we outlive our minds, we want them to liquidate those assets (usually our homes and retirement accounts) to pay for a kind, calm place where we don’t suffer too much.

    I have told my children that if, in the worst-case scenario, I outlive my mind, I want them to visit me once or twice a year (surprise visits for the institution!) just to make sure that I am receiving the care they want,

    If they are not satisfied, they will have power-of-attorney to move me to a better place.


    • Good article Maggie, and you’re absolutely right. And this is a topic that a lot of people don’t like to talk about until they find themselves in the middle of dealing with it.

      I love your idea of raising the inheritance tax. I’m in favor of that (especially for significant estates), even if it weren’t specifically earmarked for elder care. Vast amounts of inherited wealth rarely do anybody any favors. Working for what you have brings far more of a sense of satisfaction than just having it handed to you by way of a will. And allowing huge sums of money to transfer from one generation to another simply serves to perpetuate the ridiculous distribution of wealth in this country. Your idea for an earmarked purpose for a higher estate tax is excellent, and I agree that it’s a cause a lot of people would probably get behind.

      • Thanks Louise.
        I think people would resist a higher estate tax unless it was earmarked for a purpose that
        most of us could agree on. But caring for the elderly–and perhaps offering very good, subsidized day care for children–
        might be two things that most people would get behind.

        • I hate the idea of a 100% inheritance tax, for a couple of reasons.

          First of all, governments can never resist the temptation to divert money to other uses. It happens with highway funds all the time. Here in North Carolina, money the state earned from the “Educational Lottery” was supposed to go to schools. It doesn’t.

          Money from the tobacco settlements were supposed to go to education, smoking cessation, and care for smokers. It hasn’t. It was a windfall for many states.

          So let’s get real: an inheritance tax to pay for Alzheimer’s care wouldn’t go to those patients, whose families would still be left on the hook for their care.

          Secondly: a 100% inheritance tax is HORRIBLY unfair to the middle class. I would not want my inheritance diverted to care for Alzheimers care if there were no history of Alzheimers in my family. That is quite literally confiscation of family property, and it would be a non-starter politically.

          Until we reform long term care itself, and bring costs under control, care for these patients will continue to be crippling for some families. Most importantly, it is important to change the culture of this country on death and dying, to reduce those costs by avoiding unnecessarily aggressive care and move these patients into assisted living (which costs far less than nursing homes) earlier, and into hospice early enough to do good for these families.

          As a former hospice nurse, I’ve struggled to get families to understand that sending their loved one with Alzhiemer’s to the hospital for “fluids” (ie IV fluids) is the wrong thing to do to the dying. Families become guilty and think withholding food and fluids is “cruel,” not understanding it is actually the kindest thing you can do for them.

          The mother of a dear friend with cerebral atrophy is currently dying in a nursing home. I knew this lady for five years; she was a wonderful person. She’s been non-verbal for about 5 years now, and currently has aspiration pneumonia. She has a living will: no IVs. Her husband, who is an RN, had the facility start IV fluids and antibiotics several weeks ago.

          What he should have done was let nature take its course. With the best intentions he prolonged her suffering, because he wants to “do the right thing.”

          When even health care professionals make these horrible decisions, it is obvious that we need a major cultural shift in how we approach death and dying before we will be able to do anything meaningful to ease Alzheimer’s patients into a dignified death.

          BTW, my mother has Alzheimer’s and lives in assisted living. It runs rampant in my family, and I’m more afraid of that than I am of the cardiovascular disease that also runs in my family. I’m doing my best for my mother, and fortunately Dad put aside enough money to help pay for her care. I don’t expect to inherit anything. My biggest fear is that when Mom’s time comes, my brother will starting fighting me on the right decisions to let her go peacefully, and her suffering will be prolonged.

          • Panacea–

            While there is a genetic component to Alzheimer’s, it remains a mysterious disease.

            The biggest predictor is how long you live. If you live into your 80s you will have a 50/50 chance of dying of Alzheimer’s. (Many
            people develop Alzheimer’s in their 80s, but are lucky enough to die of something else (stroke, etc.) before A kills them. So more than 50% of people who live into their 80s will be diagnosed with Alzheimer’s and 50% will die of it.

            Bottom line, as we live longer any one of us could easily develop Alzheimer’s. Whether a parent had it is no predictor. The percent of the population developing Alzeheimer’s has sky-rocketed over the past 2 generations (our generation and our parent’s generation). We (boomers) are the first generation to see it coming.

            A 100% inheritance tax is not unfair to the middle-class. AS our parents live longer very few middle-class (median income) boomers will inherit anything. Those who inherit will be those in the wealthiest 20% with those at the very top inheriting enormous sums. This is a major reason while the gaps between the middle-class, the upper-middle-class and the very, very wealthy are widening. Those at the top have far more political power than everyone else (because they have the money that supports campaigns) and this is hurting our economy while also undermining equality in this country.

            (You are very lucky that your father was able to put away enough for your mother’s care. But most people either aren’t able to –not enough income or other medical expenses wipe out savings, — or not wise enough to save.)

            These are reasons why I would favor a much higher inheritance tax–leaving, say $40,000 untouched.

            But you are right, it is very difficult to “ear-mark taxes” for a particular cause. Though since inheritance taxes are a separate category (not part of income taxes) it Might be possible. Perhaps state Supreme Courts could rule on this in various states (since a good part of inheritance taxes are state taxes.)

            That said, we do have to do something to raise the $$$ we are going to need to care for the huge number of boomers who are going to suffer
            from Alzheimer’s. Since any one of us could wind up a victim, this is a cost that we should all share.

            Some people have recommended mandating long-term-care insurance. It would be a mandate like the ACA–everyone would have to buy buy long-term care insurance, or pay a steep penalty.

            There are two problems
            a) most Americans are strongly opposed to “mandates” of any kind
            b) long-term care insurance is very expensive, even if you buy it when your are young. Only about 20% of the population would able to afford the insurance. They would need at least some subsidy just as a they need a subsidy to buy insurance in the Exchanges. Where would the money for the subsidy come from?

            The ACA subsidies are funded, in large part, by contributions that Obama persuaded Pharma, the health insurance industry, device-makers, etc. to contribute, based on the fact that under the ACA they will have many new customers.
            But there won’t be an industry making $$$ on Alzheimer’s patients. Caring for them is not profitable–too labor intensive.

            Some people have suggested that we get around the problem by making physician-assisted suicide legal. The idea is that if someone is diagnosed with Alzheimer’s they will ask for physician-assisted suicide while they are still competent to make the decision. Some people object on moral and religious grounds: it is not up to use to decide when we should leave this earth. Others worry that relatives will “guilt-trip” Alzheimer’s patients into requesting suicide because they don’t want to “be a burden.”

            But the bigger problem, I think, is in countries where PA suicide is legal, Alzheimer’s patients often request it–then change their minds a few months later. (You have to give them time to think it over.)
            It turns out that very few of us are able to choose suicide unless we are extremely depressed. Letting go of life is very, very hard–even if you face a nightmarish death. And of course, hope springs eternal. Somewhere deep down in, people probably think “Maybe they’ll find a cure in two years, and be able to bring my mind back.”

            I entirely agree with you that we should not take extraordinary measures to keep Alzheimer patients alive with fluids, etc. And we should encourage everyone to make a living will–when they are diagnosed, if not before. (Ideally this is a decision that you make before you have to face a horrifying diagnosis.)

            Btw–Have you read Katy Butler’s book “Knocking on Heaven’t Door”? It’s superb.

            But the fact is that even without extreme measures, Alzheimer’s patients can live for 10, 15 years . . or more. Especially if they were in good health to begin with. People who “took care of themselves”–exercising, eating a sensible diet, avoiding tobacco, excess alcohol, etc. are the ones who are most likely to linger.

            So while changing our attitudes about death and dying will help in the way we deal with some diseases, Alzheimer’s kills very, very slowly.

            We’re going to have to face up to the fact that somehow we are going to have to care for a great many patients who will live a great many years.

            Unless, of course, a cure is found. But I wouldn’t be too hopeful.

  3. The next-to-last of the “How Americans Die” graphs indicates the percentage of total healthcare costs for nursing and retirement homes has remained flat since 2000 — about five and a half percent. That suggests that it’s “under control” but I don’t trust the numbers for two reasons.

    First, a large and growing number of old people are cared for by family members — and those expenses are certainly not included. That portion of elder care is not measurable. There is no metric for time and expenses caring for an aging family member between the time they no longer care for themselves until they qualify for an official higher level of care — an interval that may take years.

    Second, how is “spending down” to qualify for Medicaid measured? Exhausting a lifetime of accumulated assets on the way to official destitution is in the same category as “private pay” for non-medical assistance and assisted living, neither of which is likely part of essential medical care. But it is not an optional expense. It is as essential as medical care.

  4. John —

    You’re right.

    But the share of older Americans who are cared for by family members is shrinking because
    1) Over the past 30 years, the number of women who are working (and thus not available to care for aging relatives 0
    has grown
    2) More and more family members are moving to other states (looking for jobs or new opportunities). They, too, are not in a position to care for family members.

    On Medicaid: Yes, if someone is able to receive help for Medicaid during the 15-25 years that he is afflicted by Alzheimers, the state will take his assets when he dies (assuming that his spouse is no longer alive) in order to repay other tax-payers in the state who supported him when he was sick (through Medicaid, which is funded both by state taxes and federal taxes.) In recent years, the cost of Medicaid has put a great burden on many states, making it more difficult for them to fund education, and other things that their citizens need.

    If my neighbor’s low-income father received $500,000 worth of help from Medicaid while dying of Alzheimers’s, cancer or any other disease, would I mind? No.

    But if, when he died, he a left $500,000 home to my neighbor–who paid relattively little toward his father’s care–would I think this was unfair?

    Yes. Why should I pay for his father’s care while he inherits a half-million dollar house?

    The only way that we can pay for all of the care that all of our parents need is if we pool our contributions.

    • Medicaid in Georgia doesn’t wait for someone to die to take their assets. Here one doesn’t even get Medicaid until they have gone thru “spending down” all assets to the edge of destitution. Surviving spouses are permitted to have a house, car and limited cash assets (I think it is $5000 or less) but nothing more. No investments. No other property. No stock. Until that time, Medicaid is not approved.

      In the case there is no surviving spouse, there can be no car or house, and I think cash is then limited to two thousand dollars. Both of my parents went down this road. My mother was allowed a car and house and their savings was modest enough to allow her to qualify.

      To prevent families from gaming the system, any transfer of assets to others is subject to a post mortem “lookback” and any assets transferred (presumably with the aim of avoiding the rules) are subject to collection. The lookback period used to be five years, but I heard it is now ten.

      The rules are so strict that even the amount of a prepaid funeral is counted as an “asset.” The law allows ten thousand dollars for funeral expenses, but the “current value” is what is calculated, even if the arrangements were made years ago. I had to get a letter from the funeral home validating my mother’s “current value” of a prepaid funeral, which was, of course, much more than she and Dad had paid years before. The caseworker was very nice, but also very professional about following the rules.
      One local hospital has what they refer to as an “indigent clinic” for those who happen to know about it. When I first heard about it I thought it may have been for Medicaid beneficiaries, but no, they go to the main hospital or the ED. The free clinic — staffed by hospital doctors on a rotating schedule — may be for those with too many assets to qualify for Medicaid but unable to pay medical bills. I’m not sure about the details, but I was surprised to learn about this somewhat under the radar service. I worked for the same hospital five years, less than two blocks away, and knew nothing of it until a year after I left.

      • John–

        My mother also wound up on Medicaid. (MY father had died many years earlier).
        I helped New York State track down her bank accounts so that they could recover the assets.
        It only seemed fair. The state (Medicaid) had spent tens of thousands on her care.
        I didn’t expect to inherit anything.

        Here in NYS surviving spouses can keep a house a car, and some assets. $5,000 seems a small amount; I would think a spouse should
        be able to keep any retirement account (just to cover living expenses) until her or she dies. But then the retirement account, house
        and car should go to the state–or at least whatever it would take to repay the state for the care the couple received under Medicaid.

        Especially as people live longer, with diseases like Alzheimer’s, their children really cannot expect to inherit anything. I was just very
        grateful that the state was willing to take care of my mother. At the time, I was in my 20s, was just beginning to have children while working and couldn’t have taken care of her myself. (Though she did live with me until she became very ill.)

        The alternative is to insist that children take care of their parents–even if this means quitting their jobs.

  5. One very helpful option is to encourage parents (or ourselves) to enter a continuing care retirement community (CCRC) while we/they are still able to make that decision. These communities include long term care and Alzheimer’s care in their entrance fees, which can be steep in some places. But far better to use your savings to take care of yourself. The tricky part is not to make that decision too late. These places do not admit you if you already have dementia. I hope there will be more options like this in the future, but families need to talk about it now.

    • Linda-

      I agree, for people who have the money, this is definitely the thing to do. (And it is what I plan to do if I live long enough that I can no longer take care of myself.) And you are right, a person must do it before the onset of dementia. If you live into your 80s, the odds of
      developing dementia are roughly 50/50–and the odds go up the longer you live.

      So if I live to 80, I would be inclined to pick out a nice place in the country (I’m a nature lover and gardener).
      Anywhere in or close to NYC would be more than I could afford. But as I’ve told my children, I would rather be in New Hampshire or Vermont in
      a quiet setting–and have them visit me once or twice a year–rather than trying to find something affordable close to where they and I live.

      But the problem is that most people don’t have the money for the entrance fee. The fees are so high because the CCRC is taking the risk that you will develop Alzheimer’s and live to 97. In this part ofthe country, you really have to be quite wealthy (probably in top 10% in terms of wealth) to afford the fee.
      So the majority who outlive their minds are going to need help from the state.

      • A couple we knew spent their final years in a CCRC. Their adult children were financially secure and the told their children when they entered the arrangement “this is our gift to you — you will not have to worry about our care any more.” It’s my understanding that if anyone outlives their assets in a CCRC a benevolence fund picks up the final years so they need not worry. Also, part of the monthly “fee” includes a group long-term care policy which is a great idea for the business model. Since only a small percent of people will need that level of care and then for a relatively short period, a group policy makes perfect sense.

        I always thought my mother was a cash cow for the nursing home where she spent her final year. After recovering from the medical condition that put her there she was ambulatory, dressed herself, made her bed, navigated to and from the dining room by herself, took no prescription meds and was not incontinent. She would have been a good candidate for assisted living but there is no Medicaid provision for that (less expensive) level of care.

  6. “Terrifying”?

    I watched my mother slip away with dementia; she never betrayed discomfort at first being forgetful and then barely recognizing her family and surroundings. In *her* case, it was a retreat into child-like wonder at the minute, without any memory.

    I get that not everybody goes so easily, and the care to keep her as engaged as possible was not inexpensive. But out of all the outcomes I face, Alzheimer’s holds about the least terror. I don’t see why sensationalizing a condition helps us deal with our inevitable demise, at all.

    • Walt–

      I am glad your mother died peacefully.

      But I, too, have seen a person die of Alzheimer’s and have read a great deal about it.
      For most people, it is the most frightening disease of all. In the early stages you are aware that you are losing your mind,
      and that your “self” is dissolving. Anger, depression, anxiety and delusions often follow.
      I wonder, did you live with your mother while she had Alzheimer’s, or were you visiting her someplace else?
      Were you her primary care-giver?

    • Walt,

      I’m going through this with my Mom right now. She was always terrified of losing her mind (her father and brother both died of dementia), and Dad hid the early symptoms in the last couple of years of his life.

      It wasn’t until after he died that I started realizing something was very wrong. At first it was simply that we would have the same conversation every time I visited or called.

      Then Mom stopped using email, which she’d used frequently beforehand.

      She became increasingly angry with Dad’s family (albeit she had good reason, but the response was over the top considering she no longer had anything to do with them).

      Then she became more and more forgetful and paranoid. I would have to remind her several times prior to visiting that I was coming, and the last few visits she was surprised to see me because she’d completely forgotten I was coming.

      She also got more and more paranoid and started losing noticeable weight.

      It took me over a year to convince my brother that something was wrong. Mom refused to see her doctor, and while I did call him and tell him what was going on, he was not in a position to do anything unless she came to see him. We tried to involve the County Department of Aging, but Mom wouldn’t let the nurse in the house.

      Brother and I finally realized we would have to wait for something to happen before we could legally intervene. We just prayed it wouldn’t be anything serious.

      About six months after that, I get a call from my brother (who lived closer and was Mom’s primary family contact). Mom’s in the hospital with urosepsis. She had been wandering the neighborhood after she locked herself out of the house, banging on doors. She was lost; couldn’t find her way home. The neighbors called the police, who thought they were dealing with a mental health issue. It wasn’t until Mom lost continence in the ER that a nurse realized Mom had a UTI, and she was admitted to the hospital.

      When I got there Mom had a 1 to 1 sitter 24/7 because she was combative and kept trying to leave the hospital. I convinced the attending to order a neurology consult, and Mom got the MRI that finally gave us the definitive diagnosis of dementia (probably Alzheimers).

      Meanwhile Brother and I had gone through the house. Mom had been giving away a lot of possessions, breaking other valuable things, and had canned food hoarded throughout the house . . . even in the bathrooms. With extensive photo documentation, the medical records, and our testimony, we finally convinced a judge Mom was not competent and we were made her guardians. We were finally able to get her into an assisted living facility closer to my brother’s home that specialized in Alzheimer’s care.

      The last time I visited Mom, I did all the talking. She still recognizes me, but she can’t hold up a conversation. So she just listens though I know she forgets everything I say as soon as I say it.

      It’s a matter of time before she becomes non-verbal and non-ambulatory. It could take another year (it’s been three since she entered the ALF) or longer. The vibrant, intelligent, funny, caring woman I grew up with is long gone. There’s just this child in my mother’s body, with just enough of her former self leeching through to remind me of what I’ve already lost.

      I dread the day she finally becomes wheel chair bound. That’s when I have to worry about falls, bedsores, and more intensive care and hope the staff are up to giving what she needs. I worry about whether or not I’m going to have buy in from my brother when it comes time to start making the hard choices; he and Mom are very close and I don’t know he can do it.

      The bottom line is, this is a disease we need to tackle head on. We need a culture of caring and acceptance of death in order to effect better outcomes for this long term, insidious disease.

      • Panacea–

        I am so sorry that you, your mother, and your brother are going through this.

        I would urge you to ask for a palliative care specialist to talk to you and your brother.
        They are very good at helping families see that keeping someone alive just for the sake of keeping them alive (when there is
        no hope of cure) is neither kind nor “the right thing to do”–unless you are very sure that the patient would want to be kept alive in this state.

        I realize that you know this. But it could really help your brother.

        Everything you describe–the anger, the paranoia, hiding symptoms, refusing medical help are, I’m afraid, typical of many A patients.

        Often, families have to do what you did and legally intervene.

        All of this is so very hard for families.

        Please see my other reply to you. (Pls. Scroll up to reply dated April 29, 2014 at 7:12 pm

        I wish you and your brother the best. A palliative care specialist could give him permission to let go.

        • Thanks for the kind words, Maggie 🙂

          Mom’s not actively dying. The facility she’s in is very good; they have a lot of experience with Alzheimer’s patients.

          When she gets to end of life, I’ll get the palliative care experts involved. Brother has agreed to hospice when she gets to a six month diagnosis, but it’s the very end when she stops eating and drinking where I’m concerned his current resolve will waver. Having worked for a long time with these patients I know what to expect; keeping the rest of the family on board is going to be the hard part.

          I still disagree in regards to a 100% inheritance tax, especially in regards to the middle class.

          First of all, inheritance isn’t always money. Sometimes its property or a business. Farmers would be hard hit by this; family farms would disappear. Under a 100% tax, my mother’s property would have had to have been sold at her death. It wasn’t worth much: when the appraiser looked at the interior furnishings and property, he estimated about $1000 for everything. That’s about what we got when we held the estate sale. I did keep several pieces of treasured family furniture and Mom’s good china: worth less than $500. I would have lost it under such a tax.

          You can’t single out one disease for special treatment under a tax situation, no matter how much that disease costs. By trying to spread out the costs across society with a confiscatory policy, you hurt individual families. The whole point of the original family structure is to protect property. You undermine thousands of years of human history with such a tax, and the blowback from trying to implement it would be social unrest.

          I prefer options that actually could work. For starters, it makes much more sense for Medicare and Medicaid to start covering in home care for Alzheimer’s patients. This would allow their caregivers to work, contributing to the economy instead of draining it.

          Also, it is MUCH cheaper to die at home than it is to die in a facility, no matter how good. If it were up to me, Mom would be living with me and I’d have regular caregivers with her 24/7 while continuing to work. My brother doesn’t want her that far from his family (under the misguided thinking his kids will never see her; they rarely do–they dislike the home Mom’s in). It would cost Mom far less to live with me than it is costing her to live in the ALF. But it wasn’t worth a fight, so I gave Brother his way without one.

          Since Alzheimers is going to have a strong effect on the country in the next 10-30 years as the Boomers die off, I do think we’ll come up with other solutions to the problem.

  7. Maggie:

    Alzheimer’s is hard on a family. Fortunately, my mom had a bit of a savings which allowed her to be in a better than average assisted care home. Then it was to a Nursing Home after the funds ran out. My dad was a WWII veteran and we forgot to contact them as mom would have been entitled to more funding to care for her. It is something to tell readers about.

    I am a Marine Veteran and even though I am not eligible now, I can be later when worse comes to worse as can my wife. All avenues should be explored. Mom died not knowing who her children really were and thinking ours were hers. At least she knew she had children.

  8. Run 75441-

    When I read what you wrote: ” my Mom died not knowing who her children really were and thinking ours were hers. At least she knew she had children,” I smiled.

    My grand daughter looks so much like my daughter when she was very young. I can imagine that if I had lost track of time, I would think that Simone (my grand daughter) was Emily (my daughter.)

    And I can imagine that this would make Emily happy. She would know that I was recognizing both of them at once.

    This suggests that while an Alzheimer patient is still recognizing some people (and has not reached the stage where he or she is angry) it may make sense to bring
    grandchildren to visit.

    Thank you for the information about extra benefits for people who have been in the military. This is information that I will include in my next post on Alzheimer’s. (I am
    thinking about writing a very practical post that tells baby-boomers what they can do to protect themselves and their families.)

    • Maggie:

      Of course you have to be near destitute to collect from the VA. Veterans should register with the VA and get there determination which is likely to be no for now. Later it will become valuable.

      • run75441–

        I don’t know what makes you say you have to be “near destitute” to collect from the VA. The VA is not Medicaid.

        My brother-in-law is a Vet and gets much of his medical care from the VA. He is not destitute.
        And VA care is very good care. See the book, “The Best Care Anywhere”. Though since Bush launched two wars the VA has
        been badly under-funded. This has led to longer waiting times and problems if you need psychiatric care (which many who fought in Bush’s wars do)

        On Alzheimer’s and the VA see

  9. Panacea-

    I’m glad your mother is in a good place where the caregivers have experience. When possible, I think that having professionals rather than relatives care for these patients is probably best–they are not going to be as upset to watch the patient’s personality change, especially if the patient becomes very angry or paranoid. For a relative, this can be heart-breaking.

    On the whole idea of an inheritance tax, I have a feeling you just skimmed my comment and reacted to the phrase “100% tax on inheritances” :without taking in the details.

    If you look at my comment you will see that I suggested a 100% tax on amounts OVER $40,000, Secondly, I suggested a 100% tax only on investments, bank accounts, a house, very valuable artwork (which is essentially an investment)..
    Other types of “property”—furniture, china, etc. that would have sentimental value would not be included.

    Secondly I did not suggest that the money be earmarked only for Alzheimer’s. Instead I suggested that the money be ear-marked for anyone who needs long-term care.

    As many of us live longer, a great many of us will need long-term care.

    Very, very few middle class people have the money to pay for long-term care for 3, 5, or 10 years. In the future a great many of us will wind up on Medicaid (Medicare does not pay for long-term care). First we will be expected to spend down our savings, then Medicaid would kick in.

    People can no longer transfer assets to children before going on Medicaid. There is now a 6-year look-back period–when you go on Medicaid the state looks at any transfers made up to 6 years before the date you go on Medicaid, and that money has to be used for the patient’s care.

    Going on Medicaid means that you lose everything. There is no $40,000 that you are allowed to leave to heirs. And a spouse may be left with a car, a house and very, very little money.

    This is what will happen both to the middle-class and many upper-middle-class people–unless we find another way to fund long-term care.

    Regarding Medicare and Medicaid covering long-term care at home. If Medicare tried to do that it would quickly go bankrupt. (Unless you are thinking of relatives providing the care for free. These days, that is no longer practical. Most women do not stay at home.)

    You could, I suppose, double the Medicare payroll taxes to pay for this (that might or might not raise enough money), , but this would be very unfair to working class and median-income people (couples with a joint income of roughly $65,000 or less) who really cannot afford to have their payroll taxes doubled.

    An inheritance tax is far more progressive; the only people who pay it are the heirs of upper-class and upper-middle-class people who actually have something left after all of the medical bills are paid. (As you know, health insurance does not cover 100% of bills, and it does not cover long-term care unless you bought “long-term care insurance” which is a) very expensive and b) not very reliable. (Companies can run out of money–there is no guarantee that they will remain solvent.)

    My children don’t expect to inherit anything. They understand that my apartment will be sold (by me or them)
    to pay for my and my husband’s medical expenses, and by then any retirement savings will have dwindled.

    Providing long-term care at home is not practical for many low-income and middle-income people–they don’t have a nice, quiet home where they could die peacefully. Many homes are crowded and noisy,–with two generations living together, single mothers and children living with a grandmother, adult males coming and going. . . .

    For upper-middle-class people with a nice, quiet home dying at home can be ideal.

    But , caring for people one by one, with each person in his own home is far more expensive than community homes where 6 or 7 patients are cared for by two or three care-givers. ()These do not need to be “skilled nursing facilities”–unless the patients need skilled nursing. This is what palliative care specialists like Diane Meirer envision. (Especially in the case of Alzheimer’s patients who, at a certain point, don’t know where they are,
    being in their own home is not that important.)

    Regarding the history of taxation: my proposal does not “undermine hundreds of years of human history”–quite the opposite. Estate and inheritance taxes go back to medieval times.”

    You write: t”he whole point of the original family structure is to protect property. You undermine thousands of years of human history with such a tax, and the blowback from trying to implement it would be social unrest.”

    I wonder where you came across the idea that families were created “in order to protect property”? Human beings grouped together in families in order to reproduce and protect children (as well as the women who reproduced). “Families” existed long, long before these families had “property.” (Originally, the only “property” they had were caves. Some were nomadic tribes.)

    Estate and inheritance taxes go back to medieval times.

    By “the late 18th century, the prevailing opinion emerged that property transfer rights are not ‘natural,’ but granted by the government. Thus the government had the power to tax property transfers”

    In other words, children did not have a “natural” right to inherit their parents’ property.

    Traditionally, there have been two reasons for estate and inheritance taxes: a) to raise money that the government needs and b) to redistribute income.

    For hundreds of years, we have understood the dangers of having too much wealth concentrated in the hands of wealthy families. That is what foments unrest–and revolution.

    In the U.S. we have had estate taxes since 1797. Traditionally they were highest when we were at war, and govt. needed the money to protect us by fighting the war.

    “In 1864, facing escalating military expenditures, Congress added yet another new wrinkle: a gift tax on property transfers made during one’s lifetime. Thus, taxes were imposed whether one transferred property while alive (gift tax) or transferred property after death (estate tax).”

    Around 1900, we began to see the estate tax (or inheritance tax) less as a way of funding wars, and instead as a way ” to narrow the widening gap between rich and poor.” (In the 1890s that gap began to grow.)

    “Presidents Theodore Roosevelt and Woodrow Wilson both favored imposing the inheritance tax on wealthy Americans, and in 1916, during World War I, Congress not only revived the estate tax and the gift tax, but also created the income tax.

    “Linked to the idea of wealth redistribution, these taxes continue to be imposed until the present day. Between the World Wars, estate taxes were used to attempt to redistribute income, and estate tax rates reached a high of 77 percent. (My 100% inheritance tax is just a number I plucked out of the air. Very likely a 77% inheritance tax would provide enough funding for long-term care for all who need it.)

    In the U.,S. “There has also been, over the past 100 years or so, a historical relationship between estate tax and redressing social inequality.”
    (All of these quotes are from a history of estate and inheritance taxes)

    It was only in very recent times that people like Ronald Reagan began objecting to taxing the wealthy and inheritance taxes began to fall sharply.

    This began in the late 70s, and during Reagan’s administration (beginning in 1980), taxes were slashed. Following Reagan, a series of conservative, Republican presidents kept taxes low for the rich-especially inheritance taxes.

    The goal of reducing social inequality faded. Thus, today, we have the biggest gaps between the poor, the working class, the middle-class (median income families) the upper-middle class, the rich and the mega-rich than ever before. .

    These gaps have created enormous divisions in society and in the economy.

    At this point in time politicians like President Obama, Senator Elizabeth Warren, Hillary Clinton, and New York Mayor Bill DeBlasio recognize the need to begin, once again, to redistribute income.

    Inheritance taxes are one of the least painful ways to do this. You are not asking someone to give up something that they already have –you are saying that they cannot inherit all of someone else’s property.

    Finally, regarding “the family farm”–this is an argument that Reagan loved: But here are the facts:
    ” a 2005 Congressional Budget Office (CBO) study t exploded the myth that many small businesses and farms have to be liquidated to pay the estate tax. CBO found that of the few farm and family business estates that would owe any estate tax under the rules scheduled to be in effect in 2009, the overwhelming majority would have sufficient liquid assets (such as bank accounts, stocks, bonds, and insurance) in the estate to pay the tax without having to touch the farm or business.[12] Because the current rules are even more generous than the policies CBO analyzed, even fewer estates today would be forced to sell farm or business assets.
    Furthermore, for the few taxable estates that would face any liquidity constraints, there are special provisions written into the law for them — such as the option to spread estate tax payments over a 15-year period and at low interest rates — that would allow them to pay the tax without having to sell off any of the farm assets.”

    Even if we had a 100% inheritance tax on amounts over $40,000, that 15-year period would let people pay the tax without selling the farm.

  10. I have witnessed some people struggle because of Alzheimer’s and I pray that I won’t have to deal with the same fate when I grow old. I can’t imagine living life without a trace of the past or forgetting the things that you normally do.

    • Louise,

      Yes, Alzheimer’s is a terrible disease, though palliative care can help.

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