I posted in the younger onset forum, but thought I'd address some other questions here that maybe some of you can answer.
(1) How is it that someone with no family history of dementia can develop it? Is that common?
(2) I was watching the videos on the Alz parent site, with Joan Uronis and her husband. She had a family history of dementia, and developed it herself. . . yet she had no genetic markers (or whatever it was) for it. If that's so, how does the Alzheimer's develop if the patient has no genetic markers for it?
(3) Again referring to her, how can someone develop Alzheimer's disease when their bloodwork and brain scans come out normal? I totally don't get that, any clarity here would be great.
(4) Have you or your loved one thought you had dementia, only to have your forgetfulness and memory issues be something else, like peri-menopause or menopause? I'm wondering if what I'm experiencing isn't due to that, in addition to some bigger anxiety triggers lately.
(5) Have you been diagnosed with dementia after having been diagnosed with other things? If so, what were your symptoms previously "blamed on"?
Thank you for any answers, I really appreciate it.
So, I’m going to take a stab at this, and see how far I get in answering
your questions. . .
This is a fairly recent study that will explain some of the “yes,
but” considerations in the science of dementia discovery: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6534149/
You asked. . .
- How is it that someone with no family history
of dementia can develop it? Is that
While some dementias are familial, and there are known genome
patterns that predict a higher RISK for dementia, it is not a 1:1 relationship. You don’t need “the gene” in order to develop
a dementia. And, conversely, having “the
gene” won’t purely predict its future occurrence. These authors said it best, “Dementia is a complex disease often
caused by a combination of genetic and environmental risk factors. Although
many risk factors for the occurrence and progression of dementia have been
identified, their utility for determining individual risk through dementia
prediction models remains unclear” (Tang et al, 2015).
- I was watching the videos on the Alz parent
site, with Joan Uronis and her husband.
She had a family history of dementia and developed it herself. . . yet
she had no genetic markers (or whatever it was) for it. If that's so, how does the Alzheimer's
develop if the patient has no genetic markers for it?
Again, it isn’t a purely liner relationship, if marker then
disease; or conversely, if NO marker, no disease. The occurrence of neurological conditions is
more complex than that. Also, don’t
confuse dementia (an umbrella term that can encompass over 50 kinds of
conditions) with Alzheimer’s Disease – one particular kind of dementia.
- Again referring to her, how can someone
develop Alzheimer's disease when their bloodwork and brain scans come out
normal? I totally don't get that, any
clarity here would be great.
Here’s what the authors of that first study I cited concluded from
their work: “We conclude that
non-AD pathologies such as HS, TDP-43 inclusions, cortical ARTAG and Lewy
pathology may increase the aged brain’s vulnerability to dementia independent
of AD pathology, and that individuals with minimal CVD and the other non-AD
pathologies may be more cognitively resilient to AD neuropathology. Although it
is unknown what factors influence the accumulation of many of these
pathologies, healthy aging choices may lower the burden of CVD and could reduce
a person’s dementia risk in old age” (Robinson et al, 2018).
Translated, this means that
regardless of which pathologies shows up, (they include cerebrovascular disease
(CVD), hippocampal sclerosis (HS), aging-related tau astrogliopathy (ARTAG), as
well as TDP-43 and Lewy pathology), the INDIVIDUAL’s resilience to the disease
itself is influenced by a number of factors, not just any single precursor.
- Have you or your loved one thought you had
dementia, only to have your forgetfulness and memory issues be something else,
like peri-menopause or menopause? I'm
wondering if what I'm experiencing isn't due to that, in addition to some
bigger anxiety triggers lately.
There are many things that mimic the symptoms of dementia – or may
even BE a form of dementia, just not Alzheimer’s Disease. Consider these diagnoses (to name only a few)
– all forms of dementia, most related to another pre-existing condition:
- Alcohol-related dementia (ARD)
- Alcohol-induced persisting amnestic syndrome
(Wernicke-Korsakoff syndrome, or WKS)
- Dyslipidemia & Diabetes related risks for
- Vascular dementia (underlying cardiovascular
disease or CVD)
- Parkinson’s disease related dementia
- AIDS related dementia (rare now that drugs are
available to manage HIV infections).
Consider the differentiating symptoms of Alzheimer’s disease. . .
- MEMORY LOSS THAT DISRUPTS DAILY LIFE.
- CHALLENGES IN PLANNING OR SOLVING PROBLEMS.
- DIFFICULTY COMPLETING FAMILIAR TASKS AT HOME,
AT WORK OR AT LEISURE.
- CONFUSION WITH TIME OR PLACE.
- TROUBLE UNDERSTANDING VISUAL IMAGES AND
- NEW PROBLEMS WITH WORDS IN SPEAKING OR
- MISPLACING THINGS AND LOSING THE ABILITY TO
- DECREASED OR POOR JUDGMENT.
- WITHDRAWAL FROM WORK OR SOCIAL ACTIVITIES.
- CHANGES IN MOOD AND PERSONALITY
And realize that these changes PERSIST, they are not fleeting,
momentary or returned to normal after hang-over recovery.
- Have you been diagnosed with dementia after
having been diagnosed with other things?
If so, what were your symptoms previously "blamed on"?
blame their symptoms on everything imaginable – that‘s human.
There are also
diseases that cause dementia-like symptoms, but are treatable diseases which
should be addressed and not ASSUMED to be Alzheimer’s Disease such as:
- Cushing’s syndrome with steroid-dementia
- Encephalopathy with dementia-like symptoms
occurs because we make it so difficult for people with dementia to come to
terms with a positive future for themselves.
It is often society (the rest of us) that make life hard for people with
ANY neurological disorder. Yet, many
people living with dementia(s) are not themselves constantly caught up in the
stress or distress of the disease.
is not to say that we’re “done” learning how to care for people with dementia
and that we’re doing a great job – often, we’re not (as Bartlett et al, 2017,
Hope some of this is helpful!
Bartlett, R., Windemuth-Wolfson, L., Oliver, K., & Dening, T.
(2017). Suffering with dementia: the other side of “living well’’.
International Psychogeriatrics, 29(2), 177-179.
Robinson, J. L., Corrada, M. M.,
Kovacs, G. G., Dominique, M., Caswell, C., Xie, S. X., ... & Trojanowski,
J. Q. (2018). Non-Alzheimer’s contributions to dementia and cognitive
resilience in The 90+ Study. Acta neuropathologica, 136(3), 377-388.
Tang, E. Y., Harrison, S. L.,
Errington, L., Gordon, M. F., Visser, P. J., Novak, G., ... & Stephan, B.
C. (2015). Current developments in dementia risk prediction modelling: an
updated systematic review. PLoS One, 10(9), e0136181.