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for newly diagnosed and about to be diagnosed & everyone else
alz+
Posted: Tuesday, June 19, 2018 11:01 AM
Joined: 9/12/2013
Posts: 3549


My life improved when I too the advice to question the authorities version of my future.

George Bernard Shaw once said, "Progress is impossible without change, and those who cannot change their minds cannot change anything." 

http://johnmenadue.com/jane-tolman-dementia-how-did-we-get-it-so-wrong/

What families most want to know about dementia is what will happen as the condition progresses. When we do make a diagnosis, we rarely address this.  Current staging systems of dementia tend to focus on what people can do rather than what their needs are, are often designed for research, and rarely address the real need: how to provide dignity to very vulnerable people.  At the time of diagnosis, or soon after, loved ones (and the person with dementia where relevant) should be given information about the stages ahead and what they mean.  There should be a “road map” to help people navigate the path.

Dementia is often described as a memory problem and clinics for its diagnosis and management are still sometimes labelled as Memory Clinics. It’s time that we acknowledged that dementia is about a range of domains, including Cognitive (memory, language, insight, judgement, planning, reasoning), Function (inability to perform household and other tasks and ultimately personal care) Psychiatric (commonly delusions, hallucinations and depression), Behavioural (aggression, screaming, following, calling out) and Physical (swallowing, continence, mobility and eating). Families and carers have the right to know the facts.  When these symptoms of dementia arise, families should not be surprised and need to be able to recognise these as manifestations of the disease.

******


alz+
Posted: Tuesday, June 19, 2018 11:09 AM
Joined: 9/12/2013
Posts: 3549


adding a few (not live links, sorry) links to things that helped me:

http://www.themythofalzheimers.com/

https://www.facebook.com/themythofalzheimers

*****

https://changingaging.org/dementia/dementia-the-joy-of-living-an-improvisational-life/

"in her December 2017 post, “Stealing Hope,” Anne D. Basting passionately challenges the fear and stigma-inducing “tragedy narrative” that distorts  how people living with dementia are seen within the broader culture.

The two of us were especially inspired by Anne’s closing words, “Family members and friends…can learn to shift toward creativity to find emotional connection, to play, to create new moments and experiences together.” They really resonated, you see, because we are two “developmentalists” who believe that play and performance are key to how human beings continue to grow and develop regardless of age, life circumstance and/or cognitive and physical ability, In fact, we are leading a workshop series, “The Joy of Dementia (You Gotta Be Kidding)” in cities across the country."

****

now voyager, seek and find


Iris L.
Posted: Tuesday, June 19, 2018 11:14 AM
Joined: 12/15/2011
Posts: 16199


To motivate myself to keep moving forward, I came up with the concept of Dementia Pioneer.  I had been a pioneer at other times of my life.  I can be a pioneer again.  We are the first generation who are proactive with our illness.  We are making new pathways for ourselves and those who come after us.  Alz+ is a great Dementia Pioneer, because she is blazing new paths that I am following now.  Thank you, alz+!


Iris L.


alz+
Posted: Tuesday, June 19, 2018 12:11 PM
Joined: 9/12/2013
Posts: 3549


Keeper helped me find the obscure info I just spent 3 hours looking for on my computer, which was getting me ticked off. He just went thru "history" so I think I am posting things here because it is now, "while I still can" type info.

file:///C:/Users/margery/Downloads/Dementia_and_the_Phenomenon_of_Social_Death.pdf

"This paper presents the results of an exploratory study which examined the extent to which social death may occur before biological death among elderly people with dementia. One hundred semistructured interviews were conducted with the caregiving relatives of dementia sufferers. Ratings were made of the degree to which carers appeared to believe their dementing dependent was socially (or 'as good as') dead, as well as note taken of behaviour suggesting that they had discounted the sufferer in social terms. In over one third of caregiving relatives there was evidence of both beliefs and behaviours suggesting that a degree of social death had occurred before the sufferer's biological death. Almost all those categorised as behaving towards a sufferer as if they were socially dead expressed beliefs indicating that this was how the sufferer was perceived. However, perceiving a sufferer in ways which could be characterised as socially dead was not necessarily combined with behaving as though they were. Examples of degrees of social death are presented and discussed against the background of increasing numbers of dementia sufferers in modem Western societies." 

*****

the way we treat others contributes to how others behave towards us and the world. Not speaking is not same as being brain/soul dead. What if dementia was a path to single-mindedness? If people saw dementia as a journey to another consciousness instead of becoming bags of body fluids that cost "real people" too much time and money, how would we feel about it? 

For myself, I choose this view. It is as accurate as the bag of nothing idea. I know this because when my Dad was dying at end of ALZ we communicated with eyes, heart to heart. 

Be careful what you buy into. People on this board could try this out, report back from the field.