It’s something I consider from time to time. Dementia. Or more specifically, Alzheimer’s.
I worry about whether or not I’m likely to get it. I wonder if it’s preventable – or at least – if the odds of not getting it are improved by the way I exercise my brain, the foods I consume, the amount of sleep I get.
And then there’s the lifetime which has been characterized by high levels of stress for more years than I care to count.
I worry about Alzheimer’s because both my grandmothers suffered from it, though they lived well into their 80s. In contrast, my mother stayed sharp as she aged, as did many others in the family. But surely I’m not the only one to wonder what more I could reasonably do now – to increase the probability of a healthy mind in the future.
I balance the knowledge of family history with the fact that my mother’s mind was razor sharp until she passed away, in her 70s. Both my grandfathers were clear-headed until they died – one in his 90s. I tell myself I’m crazy to worry about dementia when my daily dramas require me to fully focus on the present; midlife comes with many challenges of its own. And yet…
Alzheimer’s Facts
We’re all aware that Alzheimer’s is increasingly in the news; we “boomers” are a vocal lot (good thing, too), and many are managing aging parents suffering from the disease. Others may themselves be struggling with its onset.
Are you telling yourself you’re too young to worry about it? But just how significant is the problem – and its economic costs which affect us all?
According to an AARP article from January 2012:
statistics from the Alzheimer’s Association … say the number of Americans 65 and older who have the disease is likely to increase from more than 5 million today to 13 million 40 years from now… Economic costs are expected to rise from $183 billion this year to more than $1 trillion by 2050.
Yes, that figure was $183 billion – this year.
The Vanishing Mind
Standing on the sidelines and watching someone you love disappear? The “vanishing mind” as it is sometimes referred to?
Alzheimer’s Disease is a sort of progressive vanishing, affecting thought processes, behaviors, and memory. Sometimes the most basic activities create confusion; the patient needs help with simple hygiene, basic self-care, remembering to eat or take medication.
Alzheimer’s leaves family members feeling helpless, angry, resentful. We may live in denial for a time, accept the condition eventually, and deal with intermittent guilt at our own irritation, and at the work involved, not to mention the expense.
Some compare caring for a dementia patient to dealing with a child. But in this case, the “child” was once the parent (or grandparent) who was wise, funny, self-assured, invincible. The loss is difficult to articulate; your loved one is there, and not; what she says, how she behaves, what she recalls – including a history of caring for and loving you – is changed.
Not only do I recall these feelings with regard to my own grandmothers, but a close friend lives this situation, and has for years. He’s a boomer; his mother, an octogenarian. She’s in excellent health physically, with good days and an upbeat manner as well as bad days when short term memory, language, orientation, reasoning, and mood are considerably compromised.
Marginalized Populations, Alzheimer’s
This morning I came across an intriguing article on the New York Times, which deals with dementia in the prison population – specifically, the rising numbers impacted, the potential costs of caring for them, and programs in some state systems whereby inmates are being trained to care for other inmates who are suffering from Alzheimer’s.
I’ve never considered the aging population among our marginalized segments of society before. When I think of cognitive decline – perhaps like you – I recall relatives, their outbursts, their depression, their inability to care for themselves which was generally addressed in private, by relatives or by placement in nursing homes.
I think of my grandmothers, both sweet-natured, and their lapses of recognition for those closest to them; their gradual withdrawal from the world. But there were resources – even if modest – to care for each of them. There was family to assist.
That isn’t the case for men and women who are incarcerated. But it may also not be the case for millions of the rest of us.
Crazy to Worry? Alzheimer’s Risk Factors
Am I crazy to be worried about this particular future?
Maybe yes, maybe no. I have some “positives” going for me, and some “negatives.”
Alzheimer’s risk factors include:
- age (early onset is younger than 60; more common is 60+)
- gender (women are affected more often than men)
- family history (sibling or parent)
- long-term high blood pressure
- head trauma
Smoking, depression, and drug abuse may or may not be risk factors as well, reading between the lines in the Times article.
In my favor? My mother didn’t suffer from any sort of cognitive decline other than the “normal” slowing when searching for a word now and then. She was the shining example of keeping a mind strong through constant learning – older and wiser, if you will.
Also on the plus side: my blood pressure is always normal to slightly low; I may bang my head against the metaphorical wall occasionally but no head trauma to date; I’ve never smoked and I don’t use recreational drugs.
Alzheimer’s and the “Nouveau Poor”
Still, I’m a woman, I’m possibly in the half-century range, my grandmothers had the disease, and I’m on my own. There will be no money for care of any sort were I to suffer an illness. But the thought of losing my mind is more frightening than imagining a physical decline.
I wonder if I will find myself – with plenty of company – in another sort of marginalized population that we have yet to put a label to other than “poor” or even the “Nouveau Poor” – those of us who have suffered long-term and irretrievable financial losses despite working all our lives. This may be due to unemployment, to divorce and its aftermath, to family health crises, to other recessionary factors, or any of these in combination. Note that I did not include financial risk-taking or speculation, but the sort of events that may occur in any of our lives.
Perhaps the worry stems from another source: those of us with no family to assist (and no funds to pay for services), as well as those of us who had our children as older mothers in or approaching midlife. The probability is that our sons and daughters will be too young to care for us, certainly financially, quite likely logistically – moving wherever they can get jobs, and embarking on careers and families of their own.
Dementia in Prisons, Dementia in the General Population
The article in the Times certainly warrants reading, and describes a growing problem. It states:
Dementia in prison is an underreported but fast-growing phenomenon, one that many prisons are desperately unprepared to handle. It is an unforeseen consequence of get-tough-on-crime policies — long sentences that have created a large population of aging prisoners.
Indeed, this isn’t an issue I’ve ever considered. Clearly, it’s a serious problem. But I can’t help but think of the millions of us in the general population, isolated from communities of every sort, who may be in need of some attention ourselves.
Aren’t we the disenfranchised, marginalized, once-upon-a-time mainstream? Where are our systems, our initiatives, our trainable assistants?
As I watch my friend check in on his mother daily, as I join him in spending time with her when I can, as I feel his pain and frustration at being helpless to do anything but deal with her in the moment, I offer empathy, a listening ear, and little more. He speaks to her calmly, he encourages her to laugh, he provides creative ways to address memory and other cognitive issues. He is remarkably patient and loving.
And she is fortunate in having family and sufficient funds to be cared for in a wonderful retirement community. But I know there will be no such options for me in 10 or 20 or 30 years time – and millions like me are in the same position.
Millions like us.
Is my cynicism showing? Am I really “crazy” to be worried about this?
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paul says
Saw the article re prisons and aging. The mind slows? You wonder if…..
Part of our coping is setting up a simpler life style. We will be moving to smaller digs (her row house) within two years and cutting our stuff amount by maybe half. We will be in walking distance of most necessities (including a park). Fran will reduce the complexity of her online financial accounts, multiple websites, etc (how can an older person manage all this). Then, if we dodder around the little town…so be it.
BigLittleWolf says
And if you didn’t have each other, Paul? And employment?
paul says
The idea is that when one outlives the other, it will be either me or she doing the doddering, in the simplest way possible. We are prepared to live off social security if necessary, but are making plans to stretch things out (anyone got a crystal ball?).
Lisa says
It’s a scary thought, but one I’m not sure we have a lot of control over in our life. We can do everything we can to *prevent* Alzheimers, but the sad fact some people will develop it, despite their best efforts. I believe those people who live healthy, try and keep their minds sharp and learn how to do new things even when they are older may be able to keep it at bay for a long time. I’d like to hope so anyway.
batticus says
These proteopathic diseases are caused by proteins in your brain that “flip” and change function (become toxic and create plaques that destroy brain cells) and other than the mad-cow (vCJD) variants where it is conjectured that the bad proteins can enter the bloodstream via food (eating already infected brain material) there is very little knowledge on how these diseases develop and what triggers the proteins to “flip”. In an ideal world, your health care provider could test your DNA and provide genetic counseling. In the real world, staying healthy with good food, good company and life-long learning has been shown to reduce the risk for these types of diseases. So the prescription is to find a smart challenging man that you adore, eat a healthy dinner with him, drink some wine, and laugh/love into the evening.
Huron says
Yes, it is a little crazy to worry about it – if it happens it happens. You might be better off sending up a little prayer of thanksgiving each moring you wake up with a clear head and each night you go to bed with a well lived day behind you.
BigLittleWolf says
Good points, Huron. On the other hand, if we don’t find a means to prepare for whatever it may be, isn’t that leaving a potential mess to our children? I do like your idea of a “well lived day” though.
thekitchenwitch says
My husband says that if you live long enough, you’ll get either cancer or dementia eventually…scary thought.
BigLittleWolf says
I think the scariest part is no one to care for you. Perhaps that’s always the scary part, Kitch – that vulnerability, and no one there to catch you when you fall, or ease the turmoil when you’re vulnerable.
Carol says
The possibility of alzheimers is the most frightening part of aging for me. But I don’t dwell on it, because that would change nothing. Of course, for now about all I can dwell on is dealing with husband and his cancer. For an excellent read about someone with alzheimers, read Still Alice by Lisa Genova.
BigLittleWolf says
Thank you for the recommendation, Carol. And sending all my best to you and your husband.
batticus says
NPR has a story about a reporter John Lauerman who volunteered to have his DNA sequenced and found some gene markers for a rare blood disorder and higher risk of Alzheimer’s. Very interesting story!
BigLittleWolf says
That does sound fascinating, batticus. (If you find more – give it a shout out, please!)
batticus says
I found the study the NPR reporter was signed up for, anybody can contribute to the research project if you don’t mind your anonymized genome report and health information being posted, see personalgenomes.org ; the genetic reports are very interesting in the personal profiles, amazing stuff!
BigLittleWolf says
And you might find this brief Alzheimer’s article on High50 interesting, batticus. There is definitely so much more to learn.
Wolf Pascoe says
Mostly I worry that I didn’t live well today.