Alzheimer’s community forum highlights need for more awareness

An array of brochures, pamphlets and other informational items that were provided to guests during the Alzheimer’s community forum, hosted by the Alzheimer’s Association National Capital Area Chapter, on June 25 at the Charles County Public Library, Potomac Branch in Indian Head.

According to the Alzheimer’s Association, there are more than 5.8 million Americans living with Alzheimer’s disease. In Maryland alone, there are 110,000 people living with the disease, and that number is projected to reach 130,000 by 2025.

As a leading voluntary health organization dedicated to eliminating this disease, the Alzheimer’s Association believes that no individual or family should navigate through challenges alone. One way that the association offers support is by hosting community forums which allow residents of all ages to ask questions, share their personal experiences, learn about available resources as well as discover volunteer opportunities that best serve the needs of others affected by the disease and other forms of dementia.

Working together with Southern Maryland volunteers, the Alzheimer’s Association National Capital Area Chapter hosted a community forum on June 25 at the Charles County Public Library, Potomac Branch in Indian Head to discuss the importance of providing programs and resources for local families.

“This community forum will provide a venue to engage service providers, community-based organizations, as well as community members, to better understand the gaps in education and awareness,” said Ana Nelson, vice president of programs and services for the Alzheimer’s Association National Capital Area Chapter. “People will learn what can be done to improve the quality of life of those living with Alzheimer’s and how to provide and expand services for those living in the community.”

About 14 guests participated in the June 25 forum, facilitated by several AANCAC representatives including Nelson, physician outreach specialist Karen Fagan, programs and service manager Nancy Quarles and care services manager Diane Vance. Fagan moderated a Q&A session while Vance chimed in during the open discussion.

Among the participants was Waldorf native Aaron Payne and his mother, Mavis Payne, who are the general manager and owner/director of the Mandeville House Assisted Living, respectively, based in Waldorf. Promoting the dignity and well-being of seniors has been the Paynes’ focal point for nearly 20 years, all while building lasting relationships in the community both personally and professionally.

Aaron Payne said he always had a knack and passion for helping people, having joined the family-owned business in 2016 after transitioning from a career in the hospitality industry.

“We were taking care of our elderly grandmother who had multiple diagnoses that needed to be cared for. That’s how our business was started 19 years ago,” said Aaron Payne, a Towson University alumnus who moved to Baltimore City in 2004. “Our hearts go out to those individuals who are dealing with a loved one affected by the disease. Seeing them decline or have difficulty remembering things is devastating. It can be frustrating and really get you down at times because you just want them to continue to have that same dignity and ability to live their life to the fullest extent.”

Although the two terms are often used interchangeably, dementia and Alzheimer’s have distinct differences. Dementia is a slow decline in memory, thinking and reasoning skills, in which family and friends are usually the first to observe changes in affected individuals, according to information from an Alzheimer’s Association booklet.

The most common form of dementia is Alzheimer’s, a fatal disorder that causes nerve cells to die and leads to brain tissue loss. Other common diseases that fall under the dementia umbrella are vascular dementia, dementia with Lewy bodies and frontotemporal dementia.

Older Hispanics are about one-and-a-half times as likely as older whites to have Alzheimer’s disease and other forms of dementia, while older African Americans are about twice as likely.

The reason for these differences is not well understood, according to the Alzheimer’s Association, but researchers believe higher rates of vascular disease in these groups may put them at greater risk.

“The programs that [the Alzheimer’s Association] have are extremely necessary. From our meeting, I was able to see that there’s a lot of people who are uninformed about Alzheimer’s but really want to learn more,” Aaron Payne said. “There’s a lot of educating that needs to happen.”

It is estimated that 50 million people worldwide are currently living with dementia, including more than 5 million Americans. “Barring any developments in prevention or treatment methods,” the Alzheimer’s Association noted, “this number is projected to reach nearly 14 million by 2050.”

In 2015, friends and family of people with Alzheimer’s or other forms of dementia provided an estimated 18.1 billion hours of unpaid care, which is valued at $221.3 billion nationwide. More than 80% of care provided at home is delivered by family members, friends or other unpaid caregivers, and approximately 45% of affected individuals or their caregivers reported being told of the diagnosis from a health care provider, according to a separate brochure.

“I think that there are a lot of persons who found themselves in the ‘sandwich generation’ where they have their teenage kids that they’re taking care of at home, and then they have their aged parents,” said Mavis Payne. “The baby boomers are aging right now so they’re in the sandwich generation. I find that a lot of them are not really prepared for what’s coming down the pike with their aged parents. If their parents have dementia or Alzheimer’s, they’re totally blindsided because they’re unprepared for that.”

Perpetua Edwards of Waldorf said she was blindsided when her mother was diagnosed with Alzheimer’s, a new experience that she said has challenged her in more ways than one.

“I was devastated because I’ve always seen my mom as a very strong, intelligent woman who was an active leader in the community,” Edwards said. “Even when I speak to her today, she just repeats the same questions every couple of seconds. It’s just really heartbreaking and frustrating, but I think it has a lot to do with me not understanding what she’s going through.”

Researchers are also exploring how genetic differences may impact disease risk, as longevity and lower death rates partially explain why women tend to live longer than men. The symptoms of Alzheimer’s worsen over time but because the disease affects people in different ways, the rate of progression varies.

“A few weeks ago, a lady called me and she said, ‘I went to go visit my mom and I’ve been trying to call her for days but nobody was answering the phone. My brother lives with her and he’s supposed to be taking care of her. When I went over to the house, I saw my mom on the floor in her bedroom. Then, I went downstairs to find out why my brother wasn’t taking care of her. There he was — in the bathtub, dead,’” Mavis Payne recalled. “Really caring about someone comes from the heart. We have tried very hard in our business to make sure that the people we hire and work with, care. That’s what has attributed to our success.”

Alzheimer’s is the sixth-leading cause of death in the U.S., and the only cause among the top 10 diseases that cannot be prevented, cured or even slowed. One in three seniors die from the disease or another dementia, the brochure noted, as there is currently no way to stop the underlying death of brain cells.

On average, a person with Alzheimer’s may live four to eight years after being diagnosed, but can live as long as 20 years depending on other factors. The disease typically progresses from early-, middle- to late-stage Alzheimer’s, but may overlap which makes it difficult to determine what specific stage an individual could be in.

“That’s who we’ve really been trying to help in the past 19 years of serving Southern Maryland — families who don’t have good care options or the money for big, expensive facilities in the area,” Aaron Payne said.

After attending her first community forum last month in Indian Head, Edwards said she is relieved to know that she is not alone.

She said she wants to get more involved and learn as much information as possible to enhance the relationship with her mother.

“There’s a lot of people dealing with the same tough issues. We all have parents that are older and this is new to all of us,” said Edwards, suggesting that there should be more information booths and open-house events at community places like Walmart. “But knowledge is power. I feel like I can exhale a little bit now because I got a sense of direction and that’s what I was looking for.”

To help with early detection, the Alzheimer’s Association created a list of 10 warning signs that individuals may experience in different degrees. The signs include memory loss that disrupts daily life; challenges in planning or solving problems; difficulty completing familiar tasks; confusion with time or place; trouble understanding visual images and spatial relationships; new problems with words in speaking or writing; misplacing things and losing the ability to retrace steps; decreased or poor judgement; withdrawal from work or social activities; and changes in mood or personality.

“I don’t know what we can do, as a society, to prepare these people for the inevitable. But there should be more of an awareness in our community that targets the sandwich generation. We plan to organize a support group for family members whose loved ones are dealing with this disease,” Mavis Payne said. “After working in nursing homes and hospitals as a registered nurse, I found that the quality is just not there in long-term care. So, I wanted to make a difference for a few people and have them live in my home. I moved into the basement and converted my whole upstairs to an assisted living space. They enjoy that. It’s been 19 years and I feel very rewarded.”

For a comprehensive list of local support group meetings and other resources, go to www.alz.org/nca or call the 24/7 helpline at 800-272-3900.

Twitter: @JClink_MdINDY