Alzheimer’s – your worst fear or the real you?


I’ve got some bad news and some good news. The bad news is in this recent headline…

headline-thieves steal TV while dementia patients watching it

Comedians could have a field day with that story. Young ones, that is. Older people may laugh nervously, but inside they’re probably worrying that something like that recent incident in a UK care facility could happen to them one day. In the not too distant future.

Now here’s the good news: you may be able to stave off dementia and memory loss with a daily cup of cocoa. Eating chocolate is already tops in the anti-aging tips lists. Now you can drink it and you’ll notice if anyone tries to steal the TV from under your nose. (Although you will have to wait for Mars, the company that makes those bars and funded the study, to get the flavonol-filled cocoa drink onto the market.)

Actually, there is something worse than Alzheimer’s disease. Or dementia or senility or whatever you call it when granny’s gaga. What’s worse is the terror and dread we feel about the conditions that may come with age.

A recent student showed that people over 55 fear being diagnosed with dementia more than any other condition. Two thirds of those surveyed were afraid of developing dementia while only one in 10 were scared of getting cancer. (It should be noted that this study pre-dates the current hysteria over Ebola.)

That’s the number one concern of middle-aged adults: the potential specter of having a disorder that causes you to lose your ability to remember, to recall, that changes you as a person.

– Molly V. Wagster, chief, Behavioral and Systems Neuroscience Branch, US National Institute on Aging

diagram of brain shrunken by Alzheimer's

It’s images like these that make us scared to death of getting Alzheimer’s disease.

No wonder that more than 25% of those diagnosed with an age-related brain disease – with Alzheimer’s being the most common – try to hide it from others. Another study shows that this stigma makes people delay seeking treatment when they first notice symptoms.

We wanted to highlight what may not be widely realised – that stigma exists and that the evidence shows it is likely to worsen a person’s symptoms and quality of life through loneliness and rejection. If people are too frightened to address early signs of dementia, we can’t possibly get a full picture of the disease from a research perspective, to understand how the disease first develops and how it varies from person to person. It’s clear that more needs to be done to understand the roots and causes of dementia and stamp out social stigma– the same way that stigma surrounding cancer and HIV has been all but eradicated.

Professor Hugh Perry, Chair of the MRC’s Neuroscience and Mental Health Board

The UK Alzheimer’s Society’s Alison Cook describes the disease as “losing the very essence of what makes you an individual”.

My New Old Self has no qualifications when it comes to dementia – other than as a fearful fellow 55-plus. But from my limited experience of dealing with people who have Alzheimer’s, I’m not convinced that it transforms you into another person. I also base this on reports from family, friends and caregivers of people with dementia. Check out “Outrageous Things People With Dementia Say and How to Respond”.

Person with Dementia (upon seeing their new agency caregiver): “She’s a foreigner!” (Or worse yet, a racial slur.)

I saw and heard many elders using racial references that were, to say the least, disrespectful. Again, it doesn’t necessarily mean the people are racist, though, of course, some are. Many, however, simply have lost their short-term memory and whatever inhibition they may have had. So, when they see someone of another race, they blurt out labels that they heard as youths, thus embarrassing everyone involved.

– elder care consultant Carol Bradley Bursack

If you lose your inhibitions wouldn’t that make you more – not less – like who you really are? Prejudices revealed around race and ethnicity, as in the case cited above, must have been lurking somewhere inside a person, pre-Alzheimer’s. The same would seem to apply to other Outrageous Things People With Dementia Say, e.g. making inappropriate sexual comments to and about caregivers.

My theory that dementia and memory loss do not destroy the essence of one’s individuality gets some support from an award-winning documentary chronicling a filmmaker’s own mother’s experience of Alzheimer’s. The film shows how the condition can strip away the outer shell we build up around our inner selves.

In making the groundbreaking film Complaints of a Dutiful Daughter nearly 20 years ago, Deborah Hoffman encountered both bad news and good news about her mother. First the bad news:

What I always thought of as her life, what I knew to be her life — which was me and my brother and my father and the 50 plus years she lived in New York – that’s kind of disappeared, which is a little hard for me to take.

Now here’s her good news:

The thing that makes me the happiest is that people watch the film and they come up to me and say, ‘I really love your mother.’

The person that audiences love after watching this film is still the mother that this dutiful daughter misses so much. Only now Mom is an unedited and unrestrained version of herself. But doesn’t that mean that she – and anyone else we may know with Alzheimer’s – is still the same person inside?

It is important to see Alzheimer’s in context, and to remember that dementia is not a normal part of aging. The majority of older people do not get it. Recent concern stems from the rapid growth of aging populations worldwide, which will make all aging-related conditions more prevalent.

Since we know the prevalence of the disease will explode in this century as we all live longer – the risk of dementia is 1 in 8 for those over 65 and a shocking 1 in 2.5 for those over 85 – its impact will become greater as the decades go by.

World Health Organization and Alzheimer’s Disease International

This is why Public Health England is offering middle-aged patients a rather controversial screening process so their GPs can find out how their brains are aging. Some have described it as an effort to shock them into adopting more healthy lifestyles.

Enough of the bad news/good news – let’s end with only good news. Aging brains aren’t necessarily declining brains, according to surprising findings in research supported by the US National Science Foundation and Alzheimer’s Association.

Using cognitive neuroscience methods to study aging has unexpectedly revealed that, contrary to previous thought, aging brains remain somewhat malleable and plastic… In contrast to the earlier, largely pessimistic view of aging, neuroimaging studies suggest aging brains can reorganize and change, and not necessarily for the worse… Much of our understanding of aging brains has thus far focused on declining cognitive abilities. But there is some evidence that social and emotional abilities are relatively well-preserved with age. Older adults seem to be just as good at forming impressions of others and are even better at regulating or controlling their emotions than younger adults. This suggests that brain regions underlying these abilities may not exhibit the same downward trajectory with age as those associated with cognitive abilities; these brain areas may show different patterns of reorganization and change.

– Associate Professor Angela Gutchess, Brandeis University

My still-malleable brain is very encouraged to learn that it’s not all downhill from here!



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