On wrongly assuming memory loss and old age are integral to dementia, and on missed diagnosis

Around this time last year, I was in touch with a caregiver who was trying to cope with a father’s fronto-temporal dementia. In addition to watching his decline, this caregiver was also struggling with regret and frustration; the diagnosis had been delayed because senior specialists missed it, and the family had wasted several months in bewilderment and emotional flux wondering why the father had changed so much. If they had known the diagnosis earlier, they would have been able to accept and support the father’s situation better.

Over the year since this incident, I’ve been especially alert about such cases. (This caregiver’s case, incidentally, was not an isolated case, and I have blogged about similar concerns earlier). Of course, there will be missed diagnosis for any disease, but the problem is when diagnoses are missed because of systemic misinformation and stereotypes, not merely by chance. The human cost of delayed/ missed diagnosis–misunderstandings, anger, sorrow, conflicts, and no idea how to support–can tear apart a family.

In my opinion, too much of the publicity around dementia centers on Alzheimer’s and memory loss, and too much of the depiction focuses on elderly patients. Many people, including doctors, therefore assume that the early symptoms of dementia must include memory loss and that dementia hits only the elderly. So when family doctors are consulted for a fifty year old with problems like personality changes, odd social behavior or inability to name familiar objects, they may look at stress, family conflicts, and psychiatric problems. They discard even a remote possibility of dementia because “there’s no memory loss.” Such missed diagnoses can be avoided if we redesign our awareness campaigns.

Experts have increased their earlier estimates of the percentage of young onset patients and of non-AD dementias like FTD (fronto-temporal dementia/ degeneration). But existing campaigns continue using phrases like “dementia is a disease of the elderly” and “dementia is memory loss.” Many people use “dementia” and “Alzheimer’s” interchangeably. Deeply ingrained habits require motivation and effort to change, and perhaps volunteers/ professionals involved haven’t yet seen the need for that effort. But the way I see it, such (inadvertent) exclusion/ profiling contributes to poorer visibility and thus in poorer diagnosis, which in turn hides the true prevalence of the ignored segments. People don’t think “exceptions” exist, so they are not alert about them, they don’t detect it/ diagnose it, and then, because the diagnosed cases are low, people feel justified in ignoring it. It looks like a vicious circle.

Take FTD (frontotemporal dementia/ degeneration), a group of dementias that impact the frontal and temporal lobes. A lot of volunteers consider FTD to be rare, and therefore don’t spend much effort understanding how different the symptoms are and what to be alert about. Yet, according to the Dementia India Report 2010, FTD accounts for 5-10% of the cases. That’s high enough to require attention and awareness. More interestingly, Alzheimer’s Association USA has (as per their page here, checked on the date I’m writing this blog) states that FTD is no longer considered “rare”. I quote:

FTD was once considered rare, but it’s now thought to account for up to 10 to 15 percent of all dementia cases.

Young onset dementia is another area that does not, in my opinion, get adequate coverage. Posters typically portray the stereotypical image of a retired elderly grandparent getting somewhat foggy, not young onset patients where we see a senior executive at work, wondering why he/ she is now finding the spreadsheet so difficult to understand. Visibility is also lower because many organizations working for dementia are connected with senior health/ senior enrichment fields. Their target audience is seniors, and their campaigns naturally focus on that segment. The two concepts–dementia and becoming old–get knit together into one cohesive image. Such images stick.

Yet while it is true that the overall risk of dementia increases with age, some forms of dementia are more likely in the younger age group (only 10% of FTD is found in persons older than 70, and most cases are in their 50s and 60s, according to this alz.org page . And the WHO global report on dementia mentions that the number of young onset cases could be 6-9%. I think that’s high enough to deserve visibility; if dementia is called an “epidemic” then surely 9% of an epidemic cannot be “rare” 😦

(Interestingly, Auguste D, the patient studied by Dr. Alois Alzheimer and considered the first-studied case, was in her fifties and hence an early onset Alzheimer’s patient 🙂

I’ve been gathering tidbits and links to educate myself on these topics and I keep finding reasons we need to be careful and alert. For example, some drugs prescribed for hallucinations could be appropriate for an AD patient but worsen the problem for a patient with Lewy Body dementia (another prominent form of dementia). Check this link and this link.

Regarding people assuming that memory loss has to be there as an early symptom of dementia, here’s a page that compares AD and FTD. A quote:

FTD patients exhibit behavioral and personality changes (lack of concern for social norms or other people, lack of insight into their own behaviors), but retain cardinal features of memory (keeping track of day-to-day events, orientation to space and time).

I also found some very enlightening and heart-breaking descriptions of FTD by patients and caregivers. Some examples: Inside the mind of frontotemporal degeneration by Howard Glick, a person with FTD (he also blogs at http://earlydementiasupport.blogspot.in/, and a description by the spouse of someone with FTD: When Illness makes a Spouse a Stranger.

And I perused sites discussing young onset dementia (which was earlier called early onset dementia). While I already knew (from caregivers and other reading) that the problems of being hit in the prime of one’s life were very traumatic, and how much more support was needed, even so I realized there were problems I had not thought of earlier, like how facilities/ services for dementia are often designed for elderly people with memory loss, not younger, physically stronger, and more active persons facing different types of problems.

Anyway…my overall impression is that we need a better understanding of various types of dementia, and not stick to one simple depiction just because it is more common.

There’s a personal reason I feel this way.

I have often felt uncomfortable when people have applied the dementia=Alzheimer’s equation for my mother. Often, when I told someone that she had dementia, they would begin referring to me or addressing me as someone whose mother has Alzheimer’s. This would happen (still does, for that matter) even if I specifically, empathically, and repeatedly stated that my mother’s dementia was *not* Alzheimer’s. This even happened with one physician treating her, who saw all her medical records including the notes of the neurologist and even issued a medical certificate for her correctly. Yet later, when not in the “being consulted as doctor ” mode, this person introduced me as someone whose “mother has Alzheimer’s.” Typically, in such cases, when I remind the person that my mother’s dementia was not Alzheimer’s, I have got a puzzled look, mostly followed by a shrug like does it matter?

This used to make me uncomfortable, not just because of my mother but because it seemed wrong to equate/ confuse a part (elders with Alzheimer’s Disease and showing memory loss) with the whole (the domain of dementia).

Then I began thinking about possible reasons this happens and what can be done…

Here’s what I think: I suspect that most people have coded these concepts together in their mind, so they are “wired together.”

When two words (or concepts) get wired together, we often think saying one is the same as saying the other. Think of all those jokes/ puzzles that hinge on the gender turning out to be different from what we assumed, even if no gender specific name or pronoun was used (like our assuming that an engineer is male or a nurse is female, even if we personally know scores of exceptions). So I think that for most people, hearing the word “dementia” ends up being the same as hearing bound-together words like “Alzheimer’s”, “memory loss”, “old age”. In a focused discussion, the person may remember or notice the differences and nuances, but in normal or inattentive moments, the differences are forgotten.

People change old habits and “wirings” only with great effort and only if motivated. (Think of all those failed diets and unexercised bodies). If the human cost of the bunching of words is invisible, and if people believe no one is harmed, they have no reason to invest the effort to change their terminology–it feels nitpicky, academic and unnecessary!! While the top professionals, alert about their responsibility, use correct terminology in authoritative literature, persons reading such literature may not even notice. Which means, even though the Alzheimer’s Association now says that FTD is not rare, it will be quite a while before people factor this in and rewrite their mental scripts accordingly.

On the other hand, persons who have faced inconvenience or hurt because of the mix-up are likely to be careful about terminology and depictions. (They have the motivation)

My tentative conclusion is that it is not enough to use terminology correctly. Readers are likely to ignore subtle differences; a statement that says “dementia usually involves memory loss” may not seem different from “dementia involves memory loss.” A statement that “India has an estimated 37 lakh dementia cases” is often remembered or quoted as “India has 37 lakh Alzheimer’s cases.” And “she has dementia” may be represented in one’s memory as “she has Alzheimer’s”. We need explicit statements mentioning young onset challenges. We need to highlight typical symptoms of non-AD dementias, and maybe comparisons.

So I’ve started doing my bit, educating myself and locating resources and links. I’ve increased coverage for young onset and non-AD dementias on my English and Hindi websites and I’ve found how tough it is to write stuff that represents the diversity yet doesn’t lose sight of the fact that most cases do involve elders and memory loss (most, but by no means all)…

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

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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.

3 Responses to On wrongly assuming memory loss and old age are integral to dementia, and on missed diagnosis

  1. Millions of people worldwide are experiencing memory loss for family members who are suffering from this disease it has been nice to read this article.It’s helps on how to prevent this disease.

    • The article is not about “preventing” diseases that can cause dementia, it is about recognizing the symptoms and getting an appropriate and timely diagnosis. There is, as of now, no known way of preventing dementia-causing diseases, though some advice is available on “risk reduction.” The point is, we may do everything we can to reduce our risk, and may still get dementia.

  2. Howard Glick says:

    Thank you for your article and helping with FTD awareness. Couldn’t make it through the whole article, but what I did read was excellent. All the best. Howard Glick

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