Even amid a pandemic, dementia is a top health fear of Americans, second only to cancer, according to a study published in May by the Centers for Disease Control and Prevention.
Fears associated with health conditions are not limited to the condition itself, but also the ramifications of it. The two negative health outcomes people fear most, the study found, are cognitive decline and loss of physical mobility. Respondents were nearly evenly split on whether they most feared losing the use of their mind or the use of their body.
Fear of losing one’s independence was also evident. The fear of being put in a long-term care facility, being treated by others as weak or vulnerable, and the inability to drive all registering as serious fears for 60 percent or more of respondents.
“As the U.S. population increases, the number of people affected by Alzheimer’s disease and related dementias will rise, especially among minority populations,” CDC Director Robert R. Redfield said. “Early diagnosis is key to helping people and their families cope with loss of memory, navigate the health care system, and plan for their care in the future.”
Also key is building a supportive, informed and caring community where people living with dementia can live with dignity and independence throughout their lifespan.
While dementia is a progressive disease, everyone’s journey is different. Dementia prognosis and life expectancy can vary greatly. Some people live with dementia for 20 years or more while others have a different experience.
At the Area Agency on Aging (AAA), we often hear families and people living with dementia talk about the sudden shift in how people with dementia are viewed and treated by others once their diagnosis is known.
“Suddenly, I wasn’t me anymore. I was a dementia patient. I felt the same as I did before the doctor told me the news, but now every conversation centers around, or at least starts with, my disease. I just want people to see me, not my diagnosis,” are all typical comments we hear.
It’s a global conversation. Jeremy Hughes, chief executive of Alzheimer’s Society in the UK, says, “Too many people are in the dark about dementia – many feel that a dementia diagnosis means someone is immediately incapable of living a normal life. Myths and misunderstandings continue to contribute to the stigma and isolation that many people will feel.”
AAA invites you to join us as we work to demystify the disease and take on the stigma around a dementia diagnosis. The first step in demystifying the disease is understanding. There’s no better way to begin to build understanding than to hear directly from people living with dementia.
There is a growing population of people living with dementia who are aware of their diagnosis and are speaking out. Eight of those people will present “A Journey with Dementia Minds” from 3-4:30 p.m. Thursday at The Heritage Museum and Cultural Center, and via Zoom.
In the interactive, dramatic and humorous presentation, they will share their journeys – beginning with the recognition that something was wrong, testing, diagnosis and depression that often follows the diagnosis. They will walk through their passage from the darkness of depression into the light of acceptance and the discovery of new meaning and purpose. Past attendees have said it’s a transformative and powerful experience.
After the talk, the presenters will join the live and online group in a post-performance talkback. It’s a rare opportunity to engage in an open and honest dialogue with people living with a dementia diagnosis and have your questions answered.
The goal of the event is to start to abolish the stigma associated with living with dementia, to give voice to the experience, and to advocate for full inclusion of those with dementia
There is limited space for the in-person group viewing to allow for social distancing. A Zoom link is available for those who prefer to attend remotely.
To get a free ticket to attend in person or via Zoom, register online at CampusForCreativeaging.org or contact Amy Nichols at 982-7748 or amynichols@areaagencyonaging.org.
Attend and be inspired. Help end the stigma associated with dementia.