Dementia as an alternative "neurotype"

[Jenisautistic]

ASD level III is not like dementia or althzeimers. People with level III ASD aren't necessarily dementic or low functioning. They just stims more often and can't speack verbally. They can be vocal and communicate through typing/sign language as I've seen in videos and blogs (look at Fathering Autism for sign language).

I agree with this as well

however I can feel the frustrations of people with level III autism and the comorbids

I have moderate autism with with intellectual impairment

I am around the level of a nine years old according to my neuropsychologist

I believe it is mainly the comorbids That can be a problem

like for example intellectual and developmental disorder which is the same thing as intellectual disability or impairment

is classified under neurocognitive disorders

which is the same classification they use in traumatic brain injury and dementia

many people would level III autism can speak coherently through nonverbal ways like sign language or typing

and can be very smart I think that the only comparison to dementia that would make in the situation is the sensation of feeling trapped and unable to communicate your needs

Feeling scared of the unknown or The unforeseen

being treated or thought of as a child

although again this should be treated on a case by case basis

Although I cannot speak for my friend I think my friend is trying to say that people with level III autism have similar challenges to those that have dementia
In terms of the hardships

and that was with level III autism without the anyway to communicate or make sense to others like we do although it does not to be in the same way can be trapped and locked in a world Where are their skills can decline or Regress

And many people which level III autism can go through events that caused trauma on the brain

Things may cause this to have problems with the skills that is executive functioning Which may mimic dementia in Ways

for example as I mentioned before my neuropsychologist with many tests analyzed me at the brain of a nine-year-old

even though she says my memory works OK

I have literally no recollection of many events

And because of my limited skills of communicating in certain areas I cannot explain events like i could

throughout my school years it was hard for me to learn because I could not read properly

and learn the cognitive skills your supposed to learn in school

Because the barriers like communication as I mentioned and being unable to find a way teaching that Can follow our Unique means

now I understand that dementia is the brain disease

and it’s not like autism

and I understand the dementia does need to be cured

however it also needs to be excepted that there may never be a cure

prepare for the worst and hope for the best as they say At least for the time being until we possibly could find a way to cure it or make it less than what it is

I need to be excepting the fact that this is not going to get any better and it’s going to either stay the same until it progresses or eventually causing you to die In a way which I don’t understand

I guess what people are saying is that we need to work with people with dementia and make them out the best lives they can until they pass away


My great aunt my grandmother sister had dementia for many years and they always tried to make her comfortable

Eventually they had her put in the hospice care and then sent her back home and Eventually died


So until we can find the communication with level III autism To be able to find a way for us and them To be integrated into society without changing us to make us comfortable and be able to work around our differences

and to make the best possible life out of what cards have been delt For us

weather in the terms of environment or just miscommunication or even comorbidies like intellectual disability


Please tell me if I’m making sense here I’m trying the best that I can I am my skills of communicating I’m not the best but I work so long on this hopefully someone can understand what I mean even if I can’t communicate it directly

 

[Crossbreed]

One of the key differences between aggravated autism and Alzheimers/elderly dementia, IMHX, is that ASD2/3 cognition doesn't decline (like the latter does). It just doesn't mature, either, hence the designation Pervasive Development Disorder.

 

[Fino]

Whether or not dementia is a structural neurotype, from the standpoint of how to interact with such people, I think there are many similarities. For instance:

1. Take the person as they are, instead of trying to change them.
2. Try to see what approaches work best for them, instead of trying to force everyone into one mold.
3. Be aware of areas of sensitivity, whether upset feelings (e.g. when reminded that the patient's loved one died long ago) or sensory issues (chaotic situations, etc.)
4. Never, ever put the person down for being different. They already feel challenged enough.
5. To the extent possible, involve them in choices and decisions regarding their own situation.

I honestly thought you were being satirical when you were saying it's a neurotype, but that's not to say I even have an opinion on the matter. And these five things are good tips on how to deal with all people, regardless of anything.

I work with seniors on a regular basis. I accompany two senior choirs, and I play piano for those on hospice care. I don't feel any different working with them than I do when I work with all other age groups, as far as I can tell. I wouldn't be able to describe any of those feelings very much. They're probably the same. I don't even know.

 

[Gracey]

I've done some work as a carer for a wide range of clients requiring assistance in the basics.
(washing, dressing, brushing teeth, eating, helping to bed and so on)

ranging from 40 - 90+ years and as results of strokes, injuries/accidents or decline in functioning -dementia, natural aging.

How did they make me feel?
Humbled, in awe, somewhat privileged.
They trusted me at their most vulnerable. quite a precious thing.

It never occurred to me to try to change anything about who they were as a person or their capabilities ?

Those 'mid-lifers' incapacitated as a result of strokes were generally still feisty,
the much older clients (mostly) had a gentle, quiet acceptance about their situation.
If I had to state I had a favourite, it would have been the much older clients

edited to add,
can't remember where I was going with this, got distracted and now it's gone

it had something to do with a decline or loss of brain function when compared with the previous norm for the individual.
The individual that previously required no assistance.

I understood ASD to be present from birth and unchanging, rather than as a result of disease?

 

[Autistamatic]

@Jenisautistic You make perfect sense, and your last post only goes to prove how complicated this whole field is. You say your capacity is compared to that of a nine year old, yet very few, if any, nine year olds would be able to demonstrate the reasoning, understanding and compassion you do in that post alone.

 

[NothingToSeeHere]

Dementia and alzheimers are the leading cause of death in the UK at the moment. I think it is silly to consider a terrible disease a different neuorotype in the same way that autism is. How often do autistic people talk about how autism isn't a disease or mental illness, it's a neuorodiversity? How often do we have to tell people that it's something we are born with and a fundamental part of who we are?

It could also be taken as dismissive of the suffering of people with dementia or Alzheimers and their families, or an indication that we should not attempt to cure it where as I think curing dementia should be one of the major aims of medical research as the moment, considering how many of us will suffer from it in an ever aging population.

All but 1 of my grandparents died of dementia, and it was a terrible thing to witness, to lose someone you love long before they physically die. My dad, who is only 76, has also just been diagnosed. It was not a diagnosis of a different neuorotype, it was a diagnosis of a degenerative disease which will most likely kill him, and if it doesn't will cause a great deal of suffering regardless.

 

[Sarah S]

im sorry to hear about your mother my friend

my grandmothers sister had it

i felt terrible for the both of them

my grandmother and her sister use to call each other every week until she got sick

lucky my grandmother is well and very sharp

it is very unfortunate how she lost her sister to this in such a horrible way


she was very sick but my grandmother says luckily she wasn't in pain

and i beive she died in her sleep

but it is still awful and horrific





when you said it it like asd 3 with commodities and severe i agree with nearly 100%

i also agree that it is one of the most horrible fates imaginable

Thank you my friend

Yes in my opinion i would rather die then facing the horrible faith of Alzimers. (i should add tho that my mom is VERY well looked after and she is happy in her own little world and i still have close contact with those around her even tho im not in her emidite close life any more ) & also the reason all my diagnosis has gone down & even re progressed /multiplied to worse then when i was younger as they have is due to i had to rake care of her for nearly 5 years prior to her having to go to the home ( a GOOD one ) she is at now BUT just to clarify this i DONT regret anything and would do it all again if needed despite i now know the high price i have to pay

Also we must also keep Alzimers apart from dementia if i may

Alzimers is a sicknes that comes from old age (as well as is sadly also Hereditary ) indeed and i alredy described it earlier.

Dementia is part of aging and has similar symtoms as Alzheimers BUT its NOT a illness .

 

[NothingToSeeHere]

Also we must also keep Alzimers apart from dementia if i may

Alzimers is a sicknes that comes from old age (as well as is sadly also Hereditary ) indeed and i alredy described it earlier.

Dementia is part of aging and has similar symtoms as Alzheimers BUT its NOT a illness .

Actually Alzheimers is a type of dementia, the most common type in fact. The words are not synonyms, but like how all fruit is not oranges but oranges are always a fruit, while dementia is not always Alzheimers, Alzheimers is always dementia.

 

[Autistamatic]

The point that Judy makes regarding people affected by degenerative brain diseases being covered under the neurodiversity umbrella is not that their illness is comparable to inherent neurological differences such as autism, but that those people affected should be afforded the same respect, opportunities and care. It would be foolish to suggest such conditions should not be researched or a cure sought.
Even if/when such diseases can be halted, the chances of those affected making a complete recovery are slim. We cannot (yet) restore damaged brains to their intact condition, so those people deserve to be treated as neurodivergent - i.e. their brains, through disease, now function in a different manner to the accepted norm. Just like the rest of us, their cognitive range will vary, but they deserve the same rights to life, dignity and opportunity as the rest of us.
Neurodiversity as a concept does not ignore that abilities vary or suggest that people who are incapable of performing a given role should be given that role. It is a question of human rights. One should not be denied an opportunity because of a diagnostic label but should be allowed the same rights to be considered and be judged by the same criteria.
People whose brains are damaged by disease, injury or psychological trauma are neurologically different to the normative model. They should be judged on their ability to contribute and be given the same respect as any "normal" human. They should also be afforded the same level of care and human rights when they are unable to contribute as fully, or at all.
There is more than enough room within the neurodiversity concept to accept people who are born a certain way and need no changing as well as those suffering from disease that requires a cure. It is about people, not biology.

 

[Sarah S]

Actually, Alzheimers does kill you if you don't die of something else first. It's a slow, awful death. Not only will you lose the ability to communicate and understand what's going on, you lose your ability to recognize people. You become unable to use your body, usually becoming totally bedridden. You lose all control of bodily functions, whether excretory or ingestive. You not only can't feed yourself, but become unable to swallow food. At that point, you waste away and die.

This is one reason why many people sign an advance directive asking to have no life-extending measures be taken. Most other ways to die are quicker and less miserable than dying of dementia.

This statement is straight from the edjucated and senior nurses that cares for both my mom as well as others in said home + said doctors . Yes youre deskription is sadly all to true to end up like a Vegetable BUT due to this youre imune system also shut down and hence you often take on numerus otherwise non lethal illness that due to youre reduced imune system kills you prior to said brain and body shut down

Im well aware of the difrence in the care being offered to patient with this diagnose all over the globe so i do know that Sweden is ONE of the best in this field. i heard terrible horror stories from among other countries USA , UK among others so i belive our views on this will differ based on how things work in our countries

 

[Sarah S]

Actually Alzheimers is a type of dementia, the most common type in fact. The words are not synonyms, but like how all fruit is not oranges but oranges are always a fruit, while dementia is not always Alzheimers, Alzheimers is always dementia.

I stand corected and i back down humbly. Just checked it up and youre absolutly right i mixed the diffent AGE dementia with regular dementia

Thank you for the information and corecting me so i could corect my faulty statement

Btw heres a link Changes in the Brain: 10 Types of Dementia

 

[Jenisautistic]

@Jenisautistic You make perfect sense, and your last post only goes to prove how complicated this whole field is. You say your capacity is compared to that of a nine year old, yet very few, if any, nine year olds would be able to demonstrate the reasoning, understanding and compassion you do in that post alone.

thank you! I work very hard To make sure that I make sense and that I get out all of my opinions and feelings.

 

[Streetwise]

I stand corected and i back down humbly. Just checked it up and youre absolutly right i mixed the diffent AGE dementia with regular dementia

Thank you for the information and corecting me so i could corect my faulty statement

Btw heres a link Changes in the Brain: 10 Types of Dementia

oh no there are more than four

 

[Fino]

It is about people, not biology.

I don't quite understand why this would be the case. If it's about people, then where does it stop? People don't need to be referred to as a different neurotype to get respect or care. I hope. Is it a legal issue? Will their care be better if, as a technicality, they're referred to as a different neurotype? Or is it a personal issue and it simply makes it easier for people to be compassionate when they have a particular label they can use? Is it to sort of "trick" the unkind into being kind, people who would not typically be forgiving and patient but certainly will be if they're talking to a certain "kind" of people?

 

[Crossbreed]

On this topic, I think neuro-state is more accurate than neuro-type.

 

[Autistamatic]

I don't quite understand why this would be the case. If it's about people, then where does it stop? People don't need to be referred to as a different neurotype to get respect or care. I hope. Is it a legal issue? Will their care be better if, as a technicality, they're referred to as a different neurotype? Or is it a personal issue and it simply makes it easier for people to be compassionate when they have a particular label they can use? Is it to sort of "trick" the unkind into being kind, people who would not typically be forgiving and patient but certainly will be if they're talking to a certain "kind" of people?

That's the opposite of what it means. At this time people who are divergent from the societally perceived norm are treated differently to those who claim to be normal. Neurodiversity is the concept of removing those distinctions so that everyone is treated equally and care is determined on a solely individual basis.
Think of how things have changed (though not far enough) in racial diversity. At one time it was legal to exclude black people from toilets, buses, schools - anywhere in fact. Then Rosa Parks came along and eventually that changed. POC can no longer be legally excluded on the base of their colour. Neurodiversity is exactly the same in principle. It suggests that nobody should receive lesser treatment or be excluded because their brain works differently. It's purpose is to remove the relevance of labels to the day to day lives of people who don't fit the narrow stereotype of "normal".
The use of labels is to be discouraged, not increased.

 

[NothingToSeeHere]

That's the opposite of what it means. At this time people who are divergent from the societally perceived norm are treated differently to those who claim to be normal. Neurodiversity is the concept of removing those distinctions so that everyone is treated equally and care is determined on a solely individual basis.
Think of how things have changed (though not far enough) in racial diversity. At one time it was legal to exclude black people from toilets, buses, schools - anywhere in fact. Then Rosa Parks came along and eventually that changed. POC can no longer be legally excluded on the base of their colour. Neurodiversity is exactly the same in principle. It suggests that nobody should receive lesser treatment or be excluded because their brain works differently. It's purpose is to remove the relevance of labels to the day to day lives of people who don't fit the narrow stereotype of "normal".
The use of labels is to be discouraged, not increased.

This is why I don't understand why this is of any use when talking about dementia. In my experience people with dementia are already treated on a individual basis, the presentation of the disease varies so much from person to person it can't be done any other way, and it is normal procedure (in the 3 different areas of the UK I've witnessed this process) to involve the person in any choices made (up until they are unable to understand what is happening). And the fact is that when the disease progresses to a certain point the person has to be "excluded" (assuming you mean from normal day to day life, jobs, decisions regarding their care etc) because they can be a danger to themselves and others, and need 24 hour care in a secure place for their own wellbeing.

Calling it a different neurotype isn't going to stop a nurse or doctor from treating a person badly when the simple fact that they are a vulnerable person in their care doesn't. It won't change the fact that many people with advanced dementia are completely incapable of making decisions regarding their care. It doesn't change that they may quickly become unable to work. It doesn't change what a devastating diagnosis it is for everyone involved. It doesn't change the fact that they deserve respect and as much autonomy as possible because all humans deserve that. So what is it supposed to achieve... comfort?

I'm all for people identifying however they want and if it does bring someone comfort or some sense of self-respect that they may otherwise lack then great, but I don't see any real world benefit to it. Also it doesn't align with the commonly used definition and I think there is a danger that if you stretch a definition too much it tends to lose all meaning.

 

[Streetwise]

This statement is straight from the edjucated and senior nurses that cares for both my mom as well as others in said home + said doctors . Yes youre deskription is sadly all to true to end up like a Vegetable BUT due to this youre imune system also shut down and hence you often take on numerus otherwise non lethal illness that due to youre reduced imune system kills you prior to said brain and body shut down

Im well aware of the difrence in the care being offered to patient with this diagnose all over the globe so i do know that Sweden is ONE of the best in this field. i heard terrible horror stories from among other countries USA , UK among others so i belive our views on this will differ based on how things work in our countries

i’ve also heard of some people being diagnosed with one terminal illness and then diagnosed with another one like Multiple Sclerosis then cancer and dying from cancer

 

[Autistamatic]

The thing is @NothingToSeeHere is that it's not stretching a definition - it's always been part of the concept from inception. The fact that popular perception has drawn it away from it's roots doesn't change the original intent.
As to the treatment of people with degenerative neurological diseases, people ARE discriminated against. In the early stages of many such diseases, or when they are under control, people have lost their jobs and suffered exclusion once the knowledge of their condition has been made public. I've witnessed it myself through a personal contact who has Parkinson's.
Neurodiversity is not just about autism, ADHD, dyslexia and the differences we talk about often in communities like this. Neurodiversity concerns everybody. Nobody should be discriminated against because their neurology is different, whatever the reason for that difference. Excluding people with dementia from the equation would be like excluding mixed race people from the racial diversity conversation if they're part Caucasian. Accepting diversity in any form means simply letting go of discrimination on the basis of difference.

 

[gaffaglow]

Most of my life, I have preferred the company of older people.