Let’s bring dementia out of the shadows and into the community

“Sandra Day O’Connor Says She Has Dementia, Withdraws From Public Life” was the NPR headline. As someone who works with individuals living with dementia, the first thing to cross my mind was, I wish she wouldn’t.

I respect Justice O’Connor. I empathize with her need to focus on her health, but the path of withdrawing into the shadows after a dementia diagnosis is all too familiar to me. To a large majority of the population, a dementia diagnosis means “no longer fit for public life,” both in the way that Ms. O’Connor is referring and in the seemingly mundane activities of daily life that we all take for granted.

It is likely that you know someone with dementia, and given the aging of our population, you will know more in the years to come. Still, most of us are unfamiliar with dementia. Many who live with it do so silently and secretly. Just as Justice O’Connor, they withdraw, and quietly fade away rather than threaten a reputation built during younger years. The consequence is that thousands find themselves enveloped in profound isolation, fear and stress for themselves and their caregivers.

Upon diagnosis, dementia patients are often advised to “get their affairs in order.” To many, they feel invisible from that point on. No longer Jim or Clarence or Irene. They may be quickly determined incapable of making their own decisions. This loss of independence only compounds a level of insecurity about one’s ability to function in public. With that comes the guilt of relying on a caregiver who can be just as isolated. Friends and family members, not knowing how to help, what to do or say, fall away.

But did you know there is an entire twitterverse of individuals living with dementia? There are individuals on the ‘Dementia Inclusive Durham’ advisory board. There are people who have written for major publications and who continue to teach at universities around the world.

Yes, people LIVE with dementia. They do so on a continuum with abilities and talents that can span a significant part of their later years. In many cases, people living with dementia can continue to work and live with some reasonable accommodations. If we are willing to create them.

While we have made great strides, standing on legislation like the Americans with Disabilities Act, we have much to do in accommodating changes that come with age. Every day I encounter families forced to navigate a fractured maze of resources and information. Why is this? While the answer is complicated, the core of this stems from a culture that does value aging. We have a city that holds its history in reverence, but do we know anyone who lived here during that history? Do we know what our 80-year old neighbors did for work or what our street looked like in 1960, from a person who lived there? Is there an isolated caregiver in our neighborhood who would enjoy a meal train just as much as the new mother next door?

There is no cure for dementia, but there is a cure for our neighborhood, city, state and country that fails to support those living with dementia and their caregivers. A community that can look dementia in the eye and understand that everyone deserves a chance to be part of Durham. The safety net for seniors we see today is the one that we will inherit. In the brave words of Sandra Day O’Connor, “It’s not enough to understand, you’ve got to do something.”

Jennifer Ashley is the executive director of A Helping Hand in Durham.