This terrific article from the Wall Street Journal in the fall of 2021 notes:
“As the number of people with dementia grows, more of them are speaking out to challenge assumptions about what they can and can’t do. A group of advocates, many in the earlier stages of this condition, say that people around them often struggle with understanding the full range of symptoms. … Life expectancy for those with early-onset dementia varies. One 2019 study showed a mean survival time of 17 years after symptoms start and 10 years after a diagnosis.”
Here are some additional excerpts about what these advocates want:
“They have responded by forming self-advocacy organizations, aiming to shift the focus away from dementia’s end stages. Many use a motto speaking to their desire for inclusion: “Nothing about us, without us.” Their goal is to help healthcare professionals, policy makers and family members better understand the complexities and limitations, as well as the possibilities, of living well with dementia. Another priority for them is dispelling the widespread stigma surrounding the brain disorder that includes several types of diseases, including Alzheimer’s.”
You can find the full article at this link (though note it is behind the WSJ paywall):
https://www.wsj.com/articles/
Their Dementia Diagnosis Doesn’t Mean They’re Keeping Silent
by Clare Ansberry
Wall Street Journal
October 12, 2021
The article features mostly those with early onset Alzheimer’s Disease.