What is dementia?

[Sue J]

I read a training presentation today where the author stated that a fever is a symptom of an illness and he drew the comparison with dementia being a symptom of an illness. That's the trouble there's so much confusing and inconsistent information and semantics plays a big part in our personal interpretation and understanding.


Moving on to your other point....now I'm asking the question why the Alzheimer's Society and the medical professionals use the term vascular dementia and not cerebro-vascular disease? Hope someone who is a representative can help? I'm not trying to be deliberately controversial here.

I agree with the above mentioned author - the illness being of known or unknown origin. Semantics does affect our understanding.

Presumably AS and med professionals use the term vascular dementia as it deals with the effects of dementia as a symptom of cerebro-vascular disease.

I know you're not being deliberately controversial it's like learning a new language if you get the subtleties of grammar wrong the misunderstandings can lead to dire consequences!

 

[Tender Face]

I admire your tencaity to reach an understanding and I'm with you there, the ignorance needs to be dispelled.

Ditto Sue, Jancis, I applaud you. (Apart from you are giving me sleepless nights mulling over this one!) I admire your tenacity and focus and know you are not being controversial – it’s a very good point of understanding being discussed and some brilliant contributions .... and if we could all get rid of an ‘umbrella term’ which is at best foggy to some of us should perhaps already know better (talking about me!) then there might be better chance of promoting understanding elsewhere?

To my shame ... I have never properly understood the difference between vascular disease and vascular dementia – although at first my mother was suspected of having VaD (as in vascular dementia) ... but VaD was ruled out through CT and MRI scans of the brain – but we also went for ‘vascular scans’ (mostly around her neck area) in which Vascular disease was ruled out. I am trying to recall however we got referred to that specialist unit and why?

Back to you when I have any more coherent thoughts to offer ....

Love, Karen x

 

[USA Caregiver]

Dementia definitions...the person inside the "deeply forgetful."

As longtime caregiver for my mother who has SOME form of dementia, probably misdiagnosed every step of the way...I would give failing grade to anyone who had anything to do with her official medical care, from all doctors, psychiatrists (arghhh!), nurses, and aides.

Snap judgements. Quicky tests. Short interviews. No interviews. Demeaning assumptions. Big Stamp A on her forehead, forever condemning her to a hopeless future with no control. Her life is ending in tragedy....if only I could do over again.

The Alzheimer's Association here in the states uses the fear tactic to raise funds. This is hopeless. Donate to find a cure so it will not strike YOU. Alzheimers = HOPELESS. And this frightens people from interacting with the person, or from offering a hand. You might get stuck forever helping. And yes, it can be like that...

Bob Demarco (who runs the excellent Alzheimer's Reading Room, lost his mother Dotty a month ago to sepsis, not the years of deterioration experienced by many Alzheimer's patients) decided after publishing a column by a guest expert...decided to call his mother "deeply forgetful." He eventually learned to deal just with the person he was caring for, and not compare that her to the one from years ago. And he always found a FULL whole person, just as I do with my mother.

The other forms of dementia are not well known at all, and I have just a glancing familiarity with them, which I ran across trying to help Mom. There is nowadays more awareness of what battlefield (Iraq and Afghan vets surviving roadside bomb blasts) and sports concussions can do to the brain, and thus cause WHAT?

Early Alzheimer's.

 

[Jancis]

Hello USA Caregiver and welcome to Talking Point. I'm very sorry to hear about your mother, it sounds as if you've learned a lot over the years of caring.

There's an oft-quoted axiom on here: "When you've met one person with dementia, you've met one person with dementia". It's very sad that people "with dementia" are so often not treated as individuals. This may in part be due to the fact that it's so hard to get an accurate diagnosis. But I think there's much more to it than that. I like Bob Demarco's reference to people with Alzheimer's as "the deeply forgetful".

I really do think it's sad that people who may become deeply forgetful, depressed, confused, aggressive, unaware, psychoic, as a result of so many illnesses (including Vascular Dementia, Lewy Body Disease, Pick's Disease) are labelled under one word that means a set of symptoms. And it doesn't help either that these sets of symptoms are more commonly associated with the elderly.

I'm really glad that you mentioned the Alzheimer's Reading Room as I hadn't come across this blog site before. Do you think that Alzheimer's is becoming an "umbrella term" for dementia in the states?

 

[Sue J]

Just wrote a poem Jancis which I think is related to this thread - but what do I know?

 

[Jancis]

I've just read your moving poem SueJ (in the poems section). Feel free to post it here too. It's very much related to the thread. xxx

 

[Jancis]

I watched an hour long training presentation today (from the USA) that I think may help to put everything we've been talking about here into perspective.

Here is the link http://www.crisisprevention.com/CPI...entia-Care-Challenges-and-Solutions/index.htm

Slide 3 (and the commentary) answers my specific question "What is dementia?" If you have the time please try to watch and follow it through.

Our Prime Minister is saying well-meaning things like "Dementia is a disease" when technically it isn't. No harm in that simplification, but I personally feel uncomfortable not really understanding the source of those symptoms.

This presentation is based on the philosophy of recognising what a person with dementia symptoms CAN do as opposed to what they CANNOT do. The presenter explains that this can only be achieved by improving the processes used for cognitive assessment.

It sounds so obvious when stated like this doesn't it?

This helped me understand a little bit more.
Hope it's of interest,
Love Jancis x

PS. There are a few acronyms in the presentation that I was not familiar with:

ADRD = Alzheimer's Disease and Related Dementias
IADL = Instrumental Activities of Daily Living (e.g. money management, driving a car, cooking, taking medication)
BADL = Basic Activities of Daily Living (e.g. eating, dressing, bathing)

 

[stanleypj]

I've only just come across this thread, Jancis, and I think it's a really useful one. Well done you! I can really relate to the difficulty of trying to decide how and when to use the different terms.

And as for recognising what a person CAN do as opposed to what they CANNOT, if there was one thing that I'd want all professionals to have drummed into them when they are training, this would probably be it. As the presentation implies, current tests (which often look as though they have been in use for decades, and probably have) seem to be entirely focussed on deficits and just to ensure that the sense of failure is thoroughly established, the presentation of the actual tests is less than helpful e.g. small black-and-white photo of a former prime minister, very unclear illustrations of obscure vegetables. In fact, it would be at least as accurate in most cases to ask carers what the person can do and what their difficulties are.

I've blogged about this issue:

http://adventureswithdementia.blogspot.co.uk/search?q=positives

Thanks again for a really useful thread.

 

[Jancis]

I've blogged about this issue:

http://adventureswithdementia.blogspot.co.uk/search?q=positives

Hello Stanleypj,
Thank you for your comments, I'm glad you posted and I will take a proper look at your blog later - it looks really interesting. We seem to be on the same wavelength with our discussions which is great.

I like your opening description on your blog i.e. "My wife has a 'condition'. Many people who have to have labels would say she has dementia."

Perhaps we should start a new thread about the mental tests that the professionals use to see what others think of them? I always think of Iris Murdoch who when asked the name of the prime minister replied "I don't know, but does it matter?"

 

[riveiro1]

Spanish version

"El perfil de alteration global and las funciones cognitivas hallado en las pruebas, junto con la information que nos de la mujer em relacion al deterioro cognitivo progresivo, asi como la afectacion de su nivel de autonomia e independencia, concuerda con un deterioro organico compatible con una demencia"
Translation"The overall alteration profile and cognitive functions found in the tests, along with the information that we have from his wife concludes definite progressive cognitive deterioration, together with the effect on level of autonomy and independence, consistent with organic deterioration as in dementia "

This was the conclusion from the neuropsychiatric assessment my husband had in Spain recently!

 

[Jancis]

"El perfil de alteration global and las funciones cognitivas hallado en las pruebas, junto con la information que nos de la mujer em relacion al deterioro cognitivo progresivo, asi como la afectacion de su nivel de autonomia e independencia, concuerda con un deterioro organico compatible con una demencia"
Translation"The overall alteration profile and cognitive functions found in the tests, along with the information that we have from his wife concludes definite progressive cognitive deterioration, together with the effect on level of autonomy and independence, consistent with organic deterioration as in dementia "

This was the conclusion from the neuropsychiatric assessment my husband had in Spain recently!

Thank you riveiro1 - that's a truly damning diagnosis. I'm so sorry you had to be confronted with this - with all its esoteric compexity.

 

[Jancis]

Focus on what's right with you, not what's wrong with you

Times newspaper columnist, Melanie Reid (who is paralysed from an accident) wrote about the Paralympics today - she says "Maybe instead of focusing on what the disabled cannot do, the Paralympics will teach us to celebrate what we can. Maybe the question in the future will not be, what's wrong with you, but rather, what's right with you?