New Dementia Friends program aims to erase stigma about disease
At a Squirrel Hill gathering Friday of 20 people interested in the topic of dementia, they were asked at the outset for the first word that comes to mind when they hear that term: dementia.
The ominous responses poured from their lips: “Confused ... lost ... fear... agitation ...”
For the next hour, they received a message trying to dispel such negativity about individuals with Alzheimer’s and related diseases.
The gathering was one of the initial information sessions in the region held on behalf of Dementia Friends Pennsylvania, a new initiative tied to national and global efforts to better educate the public about how individuals with such diseases are impacted — yet can still function in the community.
“We’re interested in changing the stigma that goes with dementia,” Anneliese Perry, a staff member for the local Jewish Healthcare Foundation, told the group of long-term care professionals and general members of the public who volunteered to attend the session at the Charles Morris Nursing and Rehabilitation Center.
The foundation is taking part in Dementia Friends USA, obtaining the national program’s approval to spread the anti-stigma message in Pennsylvania as the 17th state with a formal effort.
The thrust is to alter any misperceptions about the disease one by one, regardless of whether participants in the sessions have any personal ties or work related to the 5.7 million Americans estimated to have Alzheimer’s or something similar.
Those attending the hour-long sessions — or separately receiving an online education — are informally certified as Dementia Friends and encouraged to take specific actions spreading their new knowledge in the community, whether by volunteerism or other means.
More than 100 Dementia Friends locally and 22,000 nationally have completed such sessions, and those with special interest are encouraged to take additional two-hour training qualifying them to lead events themselves.
“The vision is to create a Dementia Friendly America where there is understanding and empathy for people,” said Meredith Hanley, who oversees the program for the National Association of Area Agencies on Aging, which adapted it from a project begun by the Alzheimer’s Society of the United Kingdom. “It’s a challenging disease, but you can live well with dementia. Our goal is to help people with it access the community as long as possible.”
Most of those with Alzheimer’s are living in the community, rather than institutions, in mild to moderate stages of the disease that can last for years. While it generally robs memory and decisionmaking abilities on a gradual basis, it affects each person in other ways individually in terms of their personalities and what abilities they lose and retain.
Those attending Dementia Friendly sessions receive tips about how to interact with dementia-affected individuals, such as avoiding shouting at them, giving them complicated instructions, pressuring them for quick responses or unnecessarily correcting their statements or arguing with them.
“With the right care and support, people can be successful,” advised Stacie Bonenberger, a second Jewish Healthcare Foundation staff member leading Friday’s session.