Am I Crazy To Be Worried About Dementia?

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 problemand 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?