Alzheimer's in the Spotlight

By Jeralyn, Section Social Justice
Posted on Thu Mar 26, 2009 at 07:00:00 AM EST
Tags: alzheimer's (all tags)

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5.3 million Americans have Alzheimer's. Someone develops the disease every 70 seconds. In 40 years, it will be every 33 seconds. The numbers are grim.

It's now the sixth-leading cause of death for people nationwide, surpassing diabetes. Among people over 65, it's the fifth-leading cause of death. And while deaths from heart disease, stroke and breast and prostate cancers dropped from 2000 to 2006, the number of deaths from Alzheimer's grew by 47.1 percent.

An array of prominent Americans testified on Capital Hill yesterday, all with a personal link to the disease, including Maria Shriver, former Supreme Court Justice Sandra Day O'Connor, former Senator Bob Kerry and Newt Gingrich.

Nightline did a special on it last night...Terry Moran, whose mother and grandmother died of the disease, had his DNA tested to see if he has the gene. [More...]

This will be the doom of the Baby Boomer generation. There is no cure for the disease...or treatment. We have to do better.

The expense of treating Alzheimer's is tremendous:

The report by the Alzheimer's Study Group (pdf)projects that Alzheimer's-related costs to Medicare and Medicaid alone will top more than $1 trillion annually by 2050.

"We have to put Alzheimer's on the front burner, because if we don't, Alzheimer's will not only devour our memories, it will cripple our families, devastate our health care system and decimate the legacy of our generation," Shriver told the Senate's Special Committee on Aging.

Terry Moran's tests showed he has a 19% risk, compared to 9% for most men. That's not that high. There's a segment where he's talking to his wife afterwards, about how they need to plan, for long term care.

I don't get that. As someone who has also witnessed first-hand the devastating effects of dementia in a parent, I'm on the other side... one that an 80+ year old woman voiced during the show: If she finds out she has Alzheimer's, it's time to die. That would be my preference if I develop the disease.

We need to allow people to have more control over end of life decisions. Unlike terminal cancer, people can live for years with Alzheimer's... and it's a horrible existence. Those of us who would choose to go out while we still have control of our faculties and who want to avoid the ravages of the disease, should be allowed to do so.

What I'd like to see is a fight on both fronts: to invest as much as possible in science to find a cure or treatment for the disease, but concomitantly, to change our laws on dying to empower the individual to make their own end of life decisions.

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Alzheimer's in the Spotlight | 20 comments (20 topical)

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Agreed entirely (5.00 / 2) (#1)
by gyrfalcon on Thu Mar 26, 2009 at 12:11:50 AM EST

At least with Alzheimer's, though, there's the hope that a cure can be found. Garden-variety dementia, which also destroyed my mother's last years, not so much. I think probably the rise in Alzheimer's is a rise mainly in diagnosis. Every family's history, certainly mine, is loaded with stories about "Aunt Lucy" who gradually wasted away cognitively in horrifying ways.

But we all, I think, have a right to a way out. I read somewhere that in the Netherlands, where doctor-assisted suicide is legal, few people actually take advantage of it, but the comfort of knowing that they can if they need to makes the end of life far easier to cope with. That makes a lot of sense to me.

Worse than a death sentence (5.00 / 3) (#3)
by Left of center on Thu Mar 26, 2009 at 01:30:09 AM EST

My mother started losing her memory at about the age of 53, she just turned 65 on st.Patrick's day. We went to visit her at the nursing home that she is in and she has no idea who we are or who she is. It started slowly, forgetting words and getting confused about her surroundings. She knew what was happening to her, but she was justifiably in denial having been a registered nurse and knowing how bad things were about to get. Once the ability to communicate is gone and permanent brain damage has set in, it's too late and I don't see the point in carrying on. I'm 37 now and if I'm ever diagnosed with it, I'm cashing out, and trust me, my family would totally understand.

: So sorry to hear this (none / 0) (#15)
by befuddledvoter on Thu Mar 26, 2009 at 09:49:21 AM EST

I cannot imagine watching my mother go through this. Mother just turned 91 last month and in her words, "has all her marbles."
I so want to see research money just poured into this for treatment, early diagnosis, and prevention.
Instead we see a federal government willing to invest $$$$$$$$$ in Level 3 and Level 4 labs, which deal with airborne pathogens that are not indigenous to this part of the world for the most part; can be used as bioterrorism tools; and just place us in far greater danger on our soil because of the lack of biosecurity and biosafety here and abroad. After all the investment, post 911, we are less safe because of the proliferation of these labs which now are under the radar of the federal government for the most part.
See GAO Report:
http://www.gao.gov/new.items/d08108t.pdf

[ Parent ]

Inheritance (5.00 / 1) (#6)
by koshembos on Thu Mar 26, 2009 at 01:37:14 AM EST

I hope most kids do not wait for the parents to die so they will inherit a bundle. Getting close to seniority, I am convinced my kids care about my health and don't wait for the spare change. May be you should make sure that your do better than you did.

Granted, there is an occasional vulcher, but most kids want their parent to do well.

: Interesting to find... (none / 0) (#11)
by MileHi Hawkeye on Thu Mar 26, 2009 at 09:02:50 AM EST

...this article in the paper this morning.

While statewide figures aren't available, the Denver ombudsman office has seen an upturn in financial-exploitation investigations involving the elderly: 51 cases in 2006 compared with 72 in 2007 and 70 in 2008. No government agency tracks complaints.
Elder-care experts stress that in most cases family members act ethically when dealing with their parents' financial needs.

[ Parent ]

I think every situation is different. (5.00 / 2) (#8)
by Anne on Thu Mar 26, 2009 at 07:14:07 AM EST

I have an aunt with pretty advanced Alzheimer's; she's 86 and in a nursing home. I'm not sure she knows who we are, although when we were going through the process of being appointed her guadian and conservator, the guardian ad litem told me that she did recognize my name.

She's being well-cared for, she is not anxious or agitated, still has her sweet personality and her great laugh; to all appearances, she is happy - whatever happy means to an Alzheimer's patient - and I don't think she has a responsibility to die in order to ease whatever difficulties my brother and I and our extended families are having with her situation.

It's been at least 2 years since we realized that to her, we were just the nice people who came to visit her, first at her home and then at the nursing home. I guess I just decided that it was okay for me to be one of those nice people, and to accept her situation for what it was and is.

Is it hard to go to the nursing home to see all those people whose minds are also gone, some clutching baby dolls, some calling out for help, others gathered in the activity room like lost souls? Oh, boy - yes it is. And it is as much from fear of becoming one of those people as anythng else, but I have no control over that. I look at them and wonder who they were before their minds went, what great things they did or what they loved to do.

The horrible part of the disease for those who have it is that stage when they know their minds are going - and if it were me, I can't say that I would want to experience that or put my family through it.

One of the writers for Salon had an article sometime back, called "Dinnertime at the Dementia Dining Room;" sad and funny and bittersweet, and anyone who has a loved one on an Alzheimer's floor in a nursing home will instantly relate.

: Nursing Homes.... (5.00 / 3) (#10)
by kdog on Thu Mar 26, 2009 at 08:12:11 AM EST

I used to volunteer at one in high school...I know exactly what you are on about with the screams and wails and cries...that sh*t will haunt you.

[ Parent ]

Legal assisted suicide.... (5.00 / 2) (#9)
by kdog on Thu Mar 26, 2009 at 08:10:17 AM EST

might have saved my family a lot of grief...when my old man decided he'd had enough of livin', he used the bottle to kill himself...words can't describe how hard that was to watch.

He refused a quicker method like the gun because he "didn't wanna leave a mess." It would have been nice for him to have had the option of a quick and painless IV...not that he would have chosen it for sure, with how he disliked seeing a doctor...but who knows.

Sad story (5.00 / 1) (#12)
by DFLer on Thu Mar 26, 2009 at 09:11:28 AM EST

in this morning's paper about a murder/suicide of an 83 year old man and his 81 year old wife of sixty years, who was suffering from Alzheimers.

No dignity option here.

As far as I know, (none / 0) (#2)
by bocajeff on Thu Mar 26, 2009 at 01:11:54 AM EST

A person can kill themselves with little trouble. Bottles of pills, guns, suffocation, etc...

I deal with the elderly in business and it's amazing to see how their children and grandchildren are sitting in the wings waiting for their inheritances. I can only imagine how much coercion there will be if euthanasia becomes legal. Not to mention the incentives for government and insurance companies to push it.

Having said that, I have a long standing understanding with my wife and both siblings that either I or one of them will not allow me past a certain point.

Ever tried to suffocate yourself? (5.00 / 2) (#4)
by gyrfalcon on Thu Mar 26, 2009 at 01:31:39 AM EST

How about kill yourself with, say, aspirin?

You apparently are able to empathize only with yourself.

[ Parent ]

I think I'd prefer (5.00 / 5) (#5)
by Jeralyn on Thu Mar 26, 2009 at 01:35:23 AM EST

a doctor-assosted iv drip with my family and friends around me. Overdosing on prescription pills, carbon monoxide and other means are not pleasant and carry unjust stigmas.

[ Parent ]

: Oregon has a death with dignity law. (none / 0) (#7)
by caseyOR on Thu Mar 26, 2009 at 02:10:41 AM EST

We've had this law for number of years now. The Oregon law works fairly well for people with terminal illnesses like cancer. I don't think it would help alzheimers patients, though.
Under the Oregon law, if a patient qualifies, a doctor will write a prescription for barbituates. The patient must fill the prescription, and take the pills with no help from the doctor. The doctor is not present. The patient must be able to swallow the pills and keep them down.
To get the prescription a patient must make a request to their doctor in writing. Two doctors must certify that the patient is terminally ill, and has no more than six months to live. Patients with mental health issues, including depression, are not eligible.
Since alzheimers patients live so long after the illness takes hold, the Oregon law would not apply.

[ Parent ]
: IV drip? (none / 0) (#17)
by sarcastic unnamed one on Thu Mar 26, 2009 at 12:56:59 PM EST

Is there an IV drip death that's painless?

[ Parent ]

With pills there is a good chance they won't (5.00 / 1) (#14)
by samtaylor2 on Thu Mar 26, 2009 at 09:34:04 AM EST

work. So then you are in the hospital for dementia + kidney or liver failure.

[ Parent ]

There Are Options (none / 0) (#13)
by Roland Halpern on Thu Mar 26, 2009 at 09:28:32 AM EST

The chance of developing Alzheimer's disease is always of concern, particularly for the elderly, who account for the majority of cases. There is presently one option that people can use when their ultimate desire is not to be sustained should their disease progress to the point that they are no longer able to feed or care for themselves. Every adult in this country has the right to complete an advance health care directive that outlines their wishes for end-of-life care. While we typically think of these documents dealing only with "do not resuscitate" orders or the withholding or withdrawal of artificial life support for patients in a persistent vegetative state (PVS) or coma, the advance directive can also be modified to address treatment wishes if the patient becomes severely demented - as long as these documents are completed in advance while the person is still lucid. Just as every adult has the right to complete an advance directive, they also have the right to refuse unwanted medical treatment. A person can state that should they become severely cognitively impaired and are no longer able to feed themselves, that they do not want artificial feeding or, similarly, they can state if they develop an infection (like pneumonia, which used to be referred to as "The Old Man's Friend") that they do not want antibiotics used to combat that infection. The instructions can further state that they only want care that will keep them pain and symptom free. Compassion & Choices has created a special "dementia" provision that can be added to one's advance directive and is available as a free download at http://www.compassionandchoices.org/ad_page.

: Thank you for (none / 0) (#20)
by Amiss on Thu Mar 26, 2009 at 11:42:31 PM EST

your information. Having suffered from diabetes for years, 2 heart attacks and a stroke, I have had an advanced directive for quite a while now. Like J said, when and if I happen to live long enough to start to suffer from dementia, somehow I will figure out a way to leave this world. No way do I want the burdens of such a devastating illness put upon my family. I have been a big enough pain in the butt already :).

[ Parent ]

Yep, my wife works for a Alzheimer's home. (none / 0) (#16)
by sarcastic unnamed one on Thu Mar 26, 2009 at 12:54:28 PM EST

My dad's in his mid-80's and even w/o Alzheimer's he's completely falling apart, physically and mentally.

I think at a some point I'm going to go skydiving and "forget" to pull the ripcord. Exhilarating, instant and painless.

We need to be more prepared (none / 0) (#18)
by bettym47 on Thu Mar 26, 2009 at 06:56:40 PM EST

We need to be more prepared with Alzheimer's. My aunt had it. It cost her family their savings. There are not enough nurses to give people care in their homes, and it's expensive if you can find a dependable private nurse. Nursing homes are around $8,500 a month or more, or about $280 a day. Who can afford that? With 401K plans dropping in this economic meltdown, people do not have the resources to get medical help and this illness goes on for years. It can last 10 or 20 years. Who can spend $8,500 a month for 10 years for nursing?

The other issue is that we are not training enough nurses in the US. During a time when millions are out of work, US nursing schools are turning students away, but we're bringing in more nurses from other countries constantly. Go to any nursing home and you'll see a huge shortage of nurses. We have to address the nursing shortage in the US by making nursing schools more affordable, and by hiring more teachers for nurses, and by paying nurses more. The crisis is only getting worse.

US hospitals not prepared (none / 0) (#19)
by bettym47 on Thu Mar 26, 2009 at 07:03:59 PM EST

The other issue with Alzheimer's is that hospitals themselves are not prepared for people with Alzheimer's. You don't find enough hand railings in patient rooms for patients to grab in many hospitals. There are not enough nurses to watch patients to prevent falls.