by D. Kevin McNeir for the Washington Informer.

For those who, like me, have witnessed the slow but inevitable erosion of a loved one’s memories due to a mysterious form of dementia which increasingly strips them of the ability to remember longtime friends, to recall the steps needed to perform tasks once executed almost without thinking — even taking away navigational skills that previously led them to spaces that had held a special place in their hearts — Alzheimer’s disease and its impact can seem like a death sentence.

And while medical research has yet to provide a cure, good news does exist: the rate of older Americans with dementia is on the decline. Unfortunately, the number of Americans age 85 and older is estimated to double in the next 20 years, meaning that, in sum, those with dementia will more than likely increase and by a significant percentage, according to research by a trio of scholars, among them Dr. Robert Schoeni, of the University of Michigan’s Institute for Social Research.

45 Million Affected Worldwide

Schoeni said, “More than 45 million people worldwide have dementia and its annual economic impact, including unpaid care provided by families, is estimated to be $800 billion,” he said.

Several themes emerged from their studies which examined whether trends in dementia have grown more favorable and reasons for those trends, the results published in a recent supplemental issue of The Journals of Gerontology.

Besides the positive overall decline in the prevalence of dementia, the research indicates the following: Some groups of older Americans are living fewer years with dementia, and rising levels of education, at least partially, account for the decline of dementia. But, also,  with the reduction of citizens living with diabetes and hypertension in midlife, it’s likely that the number of dementia cases will increase in the future–because people will live longer.

Although researchers conclude that the most effective way to continue decreasing the number of those living with dementia is to delay the onset of dementia, scientists say that proven methods for delaying the development of dementia or curing diagnosed cases have yet to be discovered.

Alzheimer’s by the Numbers

In the United States, the Alzheimer’s Association, founded by Jerome H. Stone in Chicago in 1980, has emerged as the largest nonprofit funder of research with a mission to “eliminate Alzheimer’s disease, provide and enhance care and support for all affected and to reduce the risk of dementia through the promotion of brain health.”

Stone’s efforts began in 1970, when information about the disease was limited and only a handful of support groups existed. He hoped to find ways to help his wife, who had been diagnosed with Alzheimer’s that year.

One-in-10 people age 65 and over in the U.S. has Alzheimer’s or other dementias, according to the Association — a number they predict will nearly triple by 2050, from 5.3 million today to a projected 13.8 million, barring the development of medical breakthroughs to prevent or cure the disease.

The impact on communities can be seen within the Greater Washington, D.C. area. In 2017, the District of Columbia had the lowest number of Alzheimer’s patients, 9,000. That level is expected to remain relatively unchanged, mainly because of the influx of younger adults continuing to move into the city.

However, neighboring communities in Virginia and Maryland have greater numbers: 140,000 and 100,000, respectively. Related data provided by the Alzheimer’s Association, indicates an increase of diagnosed cases in both states by 2025 at 190,000 and 130,000, respectively. Such increases have led to a national effort called Dementia Friendly America, to educate businesses, religious institutions and nonprofits to understand the signs of dementia and learn how they can better assist and work with those suffering from the disease.

Resistance in Black Families

Harvey E. Chambers, a longtime resident of Richmond, Va., said that while his mother was never officially diagnosed with dementia, he recognized the signs. But getting his family onboard remained all but impossible.

“In 1998, when her health began to decline, the diagnosis wasn’t as prevalent as it is today,” said Chambers, 50. He took the lead as caregiver for his mother before going on to become a certified senior advisor in 2013, enabling him to work as a caregiver coach for Lifespan Caregiver Advisors, a company that helps individuals and their families navigate all aspects of “elderhood,” a term that professionals sometimes used to refer to older adults.

Chambers added that because of established mores within the black community, his family met him with opposition when he recommended that they take advantage of support groups, therapy and opportunities to better educate themselves about Alzheimer’s disease.

“I think perceived notions of stigma kept them from utilizing the various services that the Alzheimer’s Association could have provided for us,” he said. “I didn’t let that stop me though.”

Chambers continued, “I also realized that the church, the Black Church, just wasn’t prepared for or designed to facilitate the counseling and other kinds of support that our family needed. Lately, I’ve seen more in the faith community attempting to do outreach for parishioners with dementia, but most churches don’t know how to interact with those who are often home alone, isolated and have become very different from the way they were in the past.” He said his mother lived with the disease for nearly 10 years before complications from a hemorrhagic stroke caused her death.

“Families should proactively put support systems in place that help their loved ones age with dignity and still maintain a level of independence. Wearing my professional hat, I work toward helping them to avoid making decisions when faced with a crisis which tends to bring added emotional stress on everyone,” Chambers added.

What You Don’t Know May Hurt You

Chambers’ comments about the African American community and the view of many blacks a bout Alzheimer’s appear to have merit, particularly given some of the facts and data recently shared by experts in the field.

Consider the following information provided by the Global Alzheimer’s Platform Foundation, which found that nearly half of Americans aren’t concerned about getting Alzheimer’s. Why?

• Many think they don’t have to worry because it doesn’t run in their families, despite research that says genes are not your destiny;
• Most women are unaware of their increased risk for Alzheimer’s and have no idea that symptoms may develop 20-30 years before diagnosis;
• African Americans report being the least concerned with Alzheimer’s, despite statistics showing they are twice as likely as whites to get it.

The Foundation also says the vast majority of Americans (66 percent) want a family member to be their caregiver, but more than half haven’t even talked to their families about it and have no idea what it will cost or involve. Only 1-in-4 seniors, and merely 1-in-3 millennials have talked with their children or parents, respectively, about the issue.

Only 22 percent of all Americans (and 27 percent of women) know Alzheimer’s disproportionately affects women. In fact, 71 percent of American women — both millennial and non-millennial — believe you don’t begin to develop any symptoms of Alzheimer’s disease until you are 60 or older

Although women make up two-thirds of the caregivers in the U.S., over half (54 percent) report that they’re ill-prepared to take care of their parents. And half of millennial women report feeling that way.

In addition, 54 percent of Americans say long-term care will cost $25,000 or less per year, even though it’s been shown to cost nearly double that amount on average. Nearly half of millennials believe it will cost less than $18,000 per year.

Thoughtful Aging

On average, people today live longer than their predecessors — and hopefully more comfortably. Whether we like it or not, our “elderhood” is a time of life — something that we all have in common. The writers of the book Aging Thoughtfully (Oxford University Press, 2017) posit that today’s baby boomers, given their unprecedented economic resources and sheer numbers, have the ability, as do those who were born after them, to change what has been the narrative of aging in America.

Alzheimer’s presents one of many paradoxes we must confront today. For as we are living longer, we are also being confronted by diseases like Alzheimer’s that impact the quality of life of some, often for reasons we still do not fully understand, while leaving others free from its potentially devastating impact. But for now, and until a cure can be found, we must be prepared for this mysterious disease that has the potential to rob of us of our precious memories and leave its victims changed in ways that neither they, or those who love and care for them, can fully comprehend.

 

 

Kevin McNeir, editor of the Washington Informer, wrote this article as part of the Journalists in Aging Fellows Program organized by The Gerontological Society of America, New America Media with support from AARP.

The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.