Finding welcoming support when memory leaves you

Memory Cafe at Marlborough (Photo: Supplied)

By Nyan Lynn


Memory Cafe, Waltham (Photo: Supplied by JF&CS)
Memory Cafe, Waltham (Photo Courtesy of JF&CS)

Seated on the chairs in a circle in a high-ceiling room, 80-year-old Gary Wilson and around 20 other seniors looked excited when a yoga instructor was explaining to them what they could expect very soon. They all wore name tags on their shirts.

On the table behind them were some refreshments, including cookies, grapes, carrots, popcorns, and broccoli.

Wilson has problems with his memory. He has difficulty remembering new names and new information. Together with their caregivers, he and other participants like him were at a monthly gathering at Newton Memory Café to enjoy activities.

After the introduction, the yoga instructor started demonstrating exercises and asked the participants to do like her. The exercises included stretching hands, raising legs, twisting neck and waist, and concentrating the mind on the parts of the body like forehead, chest, knees, and toes.

They looked so cheerful. Their faces lit up. About an hour and a half later, the yoga session was over.

“There are several participants who now come month after month,” said Ilana Seidmann, program coordinator of Newton Memory Café. “They enjoy the camaraderie of meeting others in similar circumstances and the guest artists.”

There are about 65 memory cafes like this one in Massachusetts. They are places of gathering for people who have forgetfulness or other changes in memory, and their friends, families or caregivers. In this welcoming and relaxing atmosphere, they exchanged their experiences and information.

Memory cafes offer different kinds of activities, including yoga, music ,art, and massage therapy. Most memory cafes meet once a month.

Patricia Wilson — wife and caregiver of Gary Wilson — said she takes her husband to Newton Memory Café every month.

In a telephone interview, Mrs. Wilson said, “We would consider trying to go to Memory Café more often than once a month because Gary really does enjoy it and look forward to it.”

She confirmed it with her husband. “Gary, you enjoy the memory cafe, right?” she asked. “Yes,” he answered slowly and softly.

By visiting memory cafes, caregivers and people with Alzheimer’s disease and other dementia can temporarily forget their medical issues and enjoy chatting and exchanging their experiences with their partners and friends, said coordinators of some memory cafes.

“Based on my experience running our cafe for over three years and from what I hear from coordinators of other memory cafes not just around Massachusetts but around the country, they are incredibly effective,” said Beth Soltzberg, director of Alzheimer’s/Related Disorders Family Support at Jewish Family & Children Service (JF&CS).

Patricia Wilson and Gary Wilson (Photo: Supplied)
Patricia Wilson and Gary Wilson (Photo Courtesy of the Wilsons)

Her organization has a Memory Café in Waltham and has been one of the leaders of the statewide dementia friendly community movement. Soltzberg developed the Massachusetts Memory Café Toolkit last year for communities working with people with Alzheimer’s disease and their caregivers.

The Alzheimer’s Association noted that the disease is the most common type of dementia, accounting for 60 to 80 percent of dementia cases.  The association also reported that this brain disease is the sixth leading cause of death in the United States, adding that one in three older adults dies of Alzheimer’s or another dementia.

The number of people who have problems with their memory is growing, and currently, an estimated 5.5 million Americans of all ages are suffering from this disease, said Alzheimer’s Association.

In terms of ethnicity, African-Americans are about twice as likely to have Alzheimer’s or other dementias as white Americans, and Hispanics are one and one-half times as likely to have these problems as older whites.

“Dementia is a big issue in any community that has a large number of very old people,” said Jan E. Mutchler, professor of gerontology at UMass Boston. She is also director of the Center for Social and Demographic Research on Aging within the university’s Gerontology Institute.

Massachusetts has a higher Alzheimer’s rate than the national average, according to Massachusetts Healthy Aging Community Profile. While the national average of Alzheimer’s disease and related dementias is 12 percent, it is over 14 percent in Massachusetts. Currently, about 120,000 people are living with Alzheimer’s in Massachusetts.  And Boston has an even higher rate of Alzheimer’s cases: 16.5 percent.

Alzheimer’s, a progressive disease, gradually worsens over years and at this point has no cure. In the early stages, patients’ loss of memory is mild, but later they lose the ability to make a conversation and respond to their atmosphere.  The most common early symptom of this disease is difficulty remembering new information.

Wilson noticed that something was wrong with his memory when he could not read books. “Reading was probably the main thing he really noticed because he’d been a very avid reader,” his wife said.

Mrs. Wilson said she still remembers that they gave away boxes and boxes of fiction and non-fiction books to a second-hand bookstore when they moved to Boston some years ago.

Her husband jumped into the interview and said slowly and softly, “I can’t, I can’t read anymore. I used to, I used to read all the time.”

His wife also said he can no longer safely walk around outside by himself. “The two things he had had a recreation were reading which he can no longer do and walking which he can no longer do unless I’m with him,” Mrs. Wilson said. “Everything slows down when you have dementia.”

Wilson still remembers his name and his wife’s name but he does not know his age. Though he knows who his grandchildren are, he does not remember their names.

Because of memory problems, life can be hard for someone living with dementia, said Soltzberg of JF&CS.

“For many family members, it’s critical to learn about their loved ones’ disease that they can interpret the person’s behavior accurately,” she said. “That can help feelings of anger and frustration that quite naturally come up.”

Experts said it is stressful for families and caregivers when their loved ones forget some or most common everyday activities or information.

“Imagine what that’s like to be caring for someone who doesn’t remember who you are and can’t remember how to brush their teeth… It’s an incredibly stressful thing,” said Ann Glora, healthy aging program manager of Ethos/AgeWell Memory Café in West Roxbury.

“The husband that you used to have is now a child because they can’t do anything. So, that totally changes a relationship. You can’t leave them alone anymore. When you take them out, you’re afraid they’ll wander away and they won’t know how to get back to you.”

People with Alzheimer’s like Steve Johanson, 64, are fortunate to have kind caregivers beside them. He developed Alzheimer’s at any early age. He was just 58 when he was diagnosed with the disease, said his wife, Judy Johanson.

“When we found out that Alzheimer’s was his diagnosis, we were devastated,” she said. “Because at 58 years old, it just wasn’t what we had planned for our future.”

Johanson was so discouraged in the beginning, said his wife. “Steve actually said at one point he wished he had a brain tumor instead of Alzheimer’s because there has been no route to treatment for Alzheimer’s. It seemed pretty, pretty dead-ended.”

She said they had two options: lie down and let this run over them or stand up and run with it. They chose the latter option. They reached out to support groups and organizations such as Alzheimer’s Association and shared their story with others. They started attending Memory Café in Waltham about a year and a half ago.

Memory cafes like the one in Waltham are heralded as a good start toward creating and promoting a dementia-friendly atmosphere as more of Boston’s and the world’s population will be dealing with such cognitive issues.

Margaret Chan, the head of the World Health Organization, noted in 2012 the estimated number of patients with dementia worldwide was 35.6 million and that the number will double by 2030 and more than triple by 2050.

“Dementia doesn’t just affect individuals. It also affects and changes the lives of family members,” Chan said.

The report also stated that the time to act is now by promoting a dementia-friendly society globally, making dementia a national public health and social care priority worldwide, improving public and professional attitudes, investing in health and social systems, and increasing the priority given to dementia in the public health research agenda.

Age-Friendly Boston said it is committed to create and promote dementia-friendly atmosphere right here and right now.

“We are training first responders and trying to help sort of recognize those signs and how to help people and intervene in cases of dementia,” said Andrea Burns, director of Age-Friendly Boston.

The Alzheimer’s Association of Massachusetts and New Hampshire also has trained police of Massachusetts on understanding and intervention options.

Judy and Steve Johanson (Photo: Nyan Lynn)
Judy and Steve Johanson (Photo by Nyan Lynn)

In addition to eight domains recommended by the World Health Organization to create an age-friendly city, the City of Boston is also committed to focusing on three other issues – dementia, social isolation, and economic insecurity.

In order to create dementia-friendly city, all the public buildings and offices should install cognitive ramps, said experts. It will benefit not only the older people but also disabled people and mothers who push strollers.

Experts also suggest communities need to raise awareness and education so people can understand dementia and reduce stigmatization and discrimination.

Under any condition, people with dementia deserve respect, said Soltzberg.

“People living with dementia still are full human beings,” she said. “They feel they need a sense of dignity and purpose and love just like anybody else.”


About Nyan Lynn 4 Articles

Nyan Lynn is a graduate journalism student at Emerson College. He is from Myanmar. He is co-founder and Editor-in-Chief of Mawkun, a monthly in-depth magazine, in Myanmar. He has been in the media industry since mid-2006. He has covered a broad range of issues, including humanitarian crises. He learned journalism in Thailand. With an aim to improve his journalism skills, he is now studying in the U.S. on a Fulbright Scholarship Program.