Dementia is not something only “others” get: Thoughts on vascular and other types of dementia (not just Alzheimer’s)

Last week, a neighbor who had been reading my Dementia Hindi website said, “I did not know this could also be due to vascular problems” (“mujhe nahin pataa tha ki yeh naadi sambandhee bhi ho sakta hai”). Her husband has hypertension, and they are not always careful about it; she was obviously shocked at the thought that neglected blood pressure problems could be connected in any way to the sort of symptoms she had seen in my mother. Dementia, hitherto a name this neighbor could barely pronounce, had become a relevant topic now.

I’d been tense watching this neighbor read the web page (the sort of tension a parent feels when a child is onstage). She had nodded at times, frowned at times, even muttered to herself. Her detailed questions after she finished reading the page showed that she was genuinely curious and concerned. In the course of my answers I happened to mention that sometimes head injuries can cause dementia, and again I saw the info-byte hit her hard; I suspect she’ll be more particular about family members wearing helmets, too.

Her concern set me thinking.

A lot of people think dementia is something that happens to others (not to them). They do not know how close it can hit. More important, they do not know that some health or safety aspects they are currently neglecting could increase their chances of dementia.

An additional problem is the confusion between the two words, “dementia” and “Alzheimer’s”. Much of dementia awareness is woven with the word “Alzheimer’s Disease”, and many dementia support organizations work under the umbrella name of Alzheimer’s. To laypersons, these terms seem interchangeable. And because “Alzheimer’s” seems an alien name, imported and “foreign”, many people are dismissive of it, and are also dismissive of dementia.

Such erroneous interchangeability causes weird misrepresentations. For example, one newspaper may claim that India has 3.7 million dementia cases but another newspaper, based on the same expert interview, may say India had 3.7 million Alzheimer’s cases. Given that Alzheimer’s is only one of the diseases that cause dementia, common sense shows that both statements cannot be true. Yet once published, the article stands as such, uncorrected, perpetually misleading.

I’ve always been concerned about this confusion between dementia and Alzheimer’s and this submersion of dementia under the word Alzheimer’s. I have many reasons for this concern. My neighbor’s facial expression as she registered the existence of vascular dementia reminded me that I’ve been planning to write about this topic someday. Meanwhile, if my webpage helps this one family become more alert about hypertension and adopt suitable mechanisms to control it, that would be some value for the effort I put in🙂

But first, just in case you don’t know the relationship between dementia and Alzheimer’s, here’s a video I made to explain it.

And here is some information on common subtypes of dementia quoted from the Dementia India Report 2010. As we can see, if we say India has an estimated 37 lakh dementia cases, then we can also say that India has an estimated 7.4 to 10.1 lakh vascular dementia cases.

Common subtypes of irreversible dementia (Table 1.1 of Dementia India Report 2010)

Dementia subtype Early, characteristic symptoms Neuropathology Proportion of dementia cases
Alzheimer’s disease Impaired memory, apathy and depression, Gradual onset Cortical amyloid plaques and neuro-fibrillary tangles 50-75%
Vascular dementia Similar to AD, but memory less affected, and mood fluctuations more prominent, Physical frailty, Stepwise progression Cerebro-vascular disease Single infracts in critical regions, or more diffuse multi-infarct disease 20-30%
Dementia with Lewy Bodies (DLB) Marked fluctuation in cognitive ability, Visual hallucinations, Parkinsonism (tremor and rigidity) Cortical Lewy bodies(alpha-synuclein) <5%
Frontotemporal dementia (FTD) Personality changes, Mood changes, Disinhibition, Language difficulties No single pathology –damage limited to frontal and temporal lobes 5-10%

Now over to some incidents and some concerns.

My mother was given a diagnosis of dementia but the doctors had clearly told me it was not Alzheimer’s, and I always mention this when I talk about my mother. After saying “my mother has dementia”, I would add, “my mother’s dementia is not because of Alzheimer’s.” Yet, many people keep referring to my mother as an Alzheimer’s patient. I am not talking only of laypersons; even many of the volunteers whom I have repeatedly told that my mother’s dementia is not Alzheimer’s have introduced me to others/ referred to me as someone whose mother “has Alzheimer’s.” I am very sure that these persons fully well know the relationship between the words dementia and Alzheimer’s and that they explain it carefully and correctly to an audience when taking awareness programs on dementia. Yet when they are not being alert, they use the terms interchangeably…

Once, when I was working with someone on a dementia awareness document, I pointed out a place where this person had written Alzheimer’s instead of dementia (I think it was on the overall stats in India); while correcting the slide this person shrugged and had a pained, irritated expression as if I was being unnecessarily nitpicky. On another similar occasion, one person actually told me, what difference does it make, people know the word Alzheimer’s through our awareness programs, so why say dementia and confuse them?

According to me, it’s simple: saying Alzheimer’s Disease is wrong and misleading if what we mean is dementia.

Frankly, I it bothers me when the press misreports and this misreporting does not get noticed by/ concern other volunteers (at least, they do not get as worried as I do). I get worried about the lower coverage of dementias which are not caused by Alzheimer’s Disease. And I get worried if professionals show indifference regarding the interchangeable way the two words are used by others. Or if they themselves do so. I’ve been thinking of doing a series of blog entries on this topic, but as I’m not sure when I’ll get around to doing this, I’ll do a warm-up blog entry today.

One concern I have is that by talking of Alzheimer’s instead of dementia we reduce public awareness/ visibility of other causes of dementia. So laypersons do not register that vascular problems could end up causing dementia, that head injuries could cause dementia, that many Parkinson’s patients may develop dementia, that there are many other medical situations that could cause this bunch of symptoms collectively called dementia. This means that people are not alert about other causes, they may not take as many precautions as they would have (had they known), and they may not seek help in time.

A lot of newspaper and magazine talk on the availability of treatments, cures, preventions again center around Alzheimer’s Disease. People assume that research funding on Alzheimer’s means that there will be no dementia type of problem once the Alzheimer’s mystery is solved and the disease is tamed (can be prevented, can be cured). They do not realize that many other diseases remain unresearched, untreated, uncured, and that people will continue to get dementia because of these diseases even if there is no Alzheimer’s Disease.

Then, much of dementia awareness focuses on memory loss, which is a prominent initial symptom in Alzheimer’s Disease. Some people even treat “memory loss” as equivalent of “dementia.” As it happens, there are some types of dementia where other symptoms are more prominent and worrisome than memory loss.

For example, take fronto-temporal dementia which is 5-10 % of the dementia cases in India as per the table above. Again, as per the table quoted above, the Dementia India Report 2010 gives the symptoms for this form of dementia as “Personality changes, Mood changes, Disinhibition, Language difficulties.” Someone expecting only memory loss to indicate dementia is likely to see these symptoms as a psychiatric problem or even someone whose character has gone “bad” (after all, these symptoms include disinhibition, which means some patients may be doing stuff like stripping or making crude sexual gestures and grabbing at people). Here’s a quote from the site of The Association for Frontotemporal Degeneration ( http://www.theaftd.org/) on the low awareness of this form of dementia:

Frontotemporal degeneration is one of the most common dementias in the younger population and is estimated to represent 10%-20% of all dementia cases. Still, most people, even many health professionals, have never heard of it.. (From http://www.theaftd.org/newly-diagnosed/ftd-basics)

So this is my worry: I am concerned about the wrapping together of dementia and Alzheimer’s Disease in so many awareness drives and other forums, because this can end up being problematic to persons suffering from other forms of dementia (25-50% of the cases, a non-trivial number). Delayed diagnosis or even missed diagnosis is one such unfortunate consequence.

Another aspect that hits me hard is the exclusion of other types of dementia in various caregiver study/ support forums. I’ve seen surveys sometimes being termed Alzheimer’s caregivers surveys though excluding caregivers of other forms of dementia may not have been an intention.

Support bodies for dementia caregivers are often under the umbrella name of Alzheimer’s, such as “Alzheimer’s society” or “Alzheimer’s and related disorders society.” Dementia caregivers of the non-Alzheimer’s dementias may not approach such bodies because of the name. I can share my own situation: in my initial days of seeking support I ignored all such bodies because the doctors had so clearly told me that my mother did not have Alzheimer’s–why, then, would I go to organizations focused on Alzheimer’s?

I find it weird that the terminology is skewed to make other dementias fall under the Alzheimer’s umbrella when, definitionally speaking, dementia is the umbrella and Alzheimer’s Disease is under it. It seems topsy-turvy to me🙂 I suspect the cause of this naming convention is historical, but it does end up making the non-Alzheimer’s cases feel a bit…unwanted? Outsiderish?

As I mentioned, this topic is close to my heart, and I don’t think I’ve done justice to it in this blog entry today. But I’ve begun thinking about it. Maybe some of you will share your thoughts and concerns (if you have any) with me through comments or email, and maybe I’ll get some idea on whether and how to pursue this topic in later blog posts.

Website referred to above for information on dementia in Hindi: http://dementiahindi.com

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

One Response to Dementia is not something only “others” get: Thoughts on vascular and other types of dementia (not just Alzheimer’s)

  1. Pingback: On wrongly assuming memory loss and old age are integral to dementia, and on missed diagnosis « Swapna writes…

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