Boston Globe (March 10, 2017): Don’t Write Us Off: People with Dementia Press for More Rights --- and Respect

Publication Date: 
Fri, 03/10/2017

Ten months ago, Peter Mittler stood before a global audience of Alzheimer’s disease researchers and advocates and decried the indignities that people with dementia undergo.

He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed with mild Alzheimer’s in 2006.

“Everybody thinks that we are just a medical problem,” Mittler told his audience.

“People underestimate us.”

“They write us off.”

“They don’t think we’re capable of making decisions.”

Mittler is determined to change that. He’s a prominent voice in Dementia Alliance International, a global organization run by and for people with dementia. Its leaders travel the world to promote its signature issue: human rights for people with cognitive impairments.

At the most basic level, their demands boil down to this: Don’t write us off. Include us in conversations about our future, rather than making decisions for us. Help us participate in community activities, rather than locking us in institutions. Let us weigh in on public policy. Give us adequate care.

Respect our essential humanity.

These activists want dementia to be seen as a form of neurodiversity: a different, and widely misunderstood, way of experiencing and interacting with the world.

They have an uphill battle.  In many countries, including America, Alzheimer’s disease is feared more than any other condition, in part because there are no effective treatments and the final stage of this illness is devastating.

“The stigma surrounding dementia is overwhelming,” Mary Radnofsky said in a phone interview