With Maine’s aging population and more people diagnosed with dementia, residents have no choice but to face the facts.
At a recent event at Avita of Stroudwater in Westbrook, groups of three or four people put uncomfortable inserts in their shoes, wore disorienting eyeglasses, headphones and gloves, and attempted to complete everyday tasks like making the bed.
It’s known as a “virtual dementia tour,” and it is meant to simulate the sometimes debilitating effects of living with forms of dementia or Alzheimer’s disease, giving participants a deeper understanding of what it’s like to function on a daily basis.
Events and programs like this are all part of the growing public awareness of dementia and Alzheimer’s, which can be often overlooked, ignored or stigmatized.
According to Ken Capron, the founder and CEO of Portland-based Memory Works, a nonprofit that hosts a series of “Memory Cafes” for those suffering from forms of dementia, during the next 15 years, the population of people aged 65 and older in Maine will go from roughly 200,000 to roughly 450,000. He said that statistic is just one that should raise awareness. In Maine alone, according to the Alzheimer’s Association, the number of individuals living with Alzheimer’s will increase from 37,000 today to over 53,000 by 2020. One in eight people aged 65 and older has Alzheimer’s disease.
Lea Rust, the marketing director at Avita of Stroudwater, a memory-care facility, has been working in senior care and memory care for 15 years. She said more people are educated about and researching dementia than ever before. She said even 10 years ago, an immediate reaction was crisis, but now families are more inclined to have a support system that includes multiple generations.
She said even organizations involved in dementia have grown, including the Maine Chapter of the Alzheimer’s Association.
“It’s night and day from where they were eight years ago,” she said. “They were small and trying to get their name out, and now everyone knows who they are.”
Avita of Stroudwater often partners with Home Instead Senior Care in Gorham to offer a full day of programs for professionals working in senior care, with another to follow in May, inviting families to participate.
Rust said the dementia tour is designed to give participants the sensations of neuropathy, arthritis and macular degeneration, while also adding white noise, which causes confusion.
She said for professionals, experiencing the “frustration and emotional journey” is often eye-opening, even for people who have worked as caregivers for those with dementia.
“How can we change our approach?” she said, referring to caregiving questions that are raised by experiencing the program.
Catherine Studley, the community services director for Home Instead Senior Care in Gorham, said the program puts you in their shoes, and can help caregivers and families in their communication skills.
“When you’re in there, you’re thinking, ‘I can’t understand a word they’re saying, and I don’t know what to do,’” she said. “You come out of that experience knowing you have to slow down, and say things really clearly. Even for people who work in this every day, the experience is a great reminder.”
The “virtual dementia tour” program is trademarked by the nonprofit organization Second Wind Dreams. According to its website, the program was created by P.K. Belville, a geriatrics specialist, and is designed to “instill hope in professional and family caregivers, providing them with a tool to move from sympathy to empathy and better understand the behaviors and needs of their loved ones and patients.”
Three participants in the final group of the day, Eileen Sanborn, Maxine Whitehouse, and Jan Mitchell, all work as caregivers in the region, but were surprised by the difficulty of the program.
“We have to walk like this?” Mitchell said after suiting up.
Mary Weston, a Home Instead employee who was coordinating the various groups, said the headphones provide loud background noise that impairs communication.
Each participant was given five tasks, such as “find the cell phone and charge it,” and “find the white shirt and put it in the closet,” and was then sent into a bedroom to complete the tasks. All three of the participants didn’t hear all five, which gave them an air of confusion when they enter the room.
“I didn’t hear all the instructions, I don’t know what else to do,” Mitchell said while in the room.
After their time was up, each said the noise was distracting. It’s seen as an important piece of the training, aimed at showing participants that clear communication is key.
“At least understand a little better what they’re going through,” Whitehouse said following the program.
Speaking about the impact of programs like the “virtual dementia tour,” Studley said they don’t want patients to simply “survive” the experience, but grow.
“It can be really easy to hunker down and survive the experience, but our real responsibility is to make life as good as it can be,” she said, adding that caregivers and families can’t look at the person as having a disability who “needs to be babysat.”
But while continuing awareness is important for caregivers and families of those with dementia already in memory-care facilities and senior care organizations, getting there can also be challenging.
According to industry professionals, it can be extremely difficult for families to even admit or realize a family member is suffering from dementia, making awareness efforts for the general public important.
Capron believes more still needs to be done to inform the general public. He said dementia and cognitive impairment are highly stigmatized, which causes reluctance from both families and potential patients to seek help.
Capron said that during a recent Memory Cafe? in Sanford, a granddaughter and grandmother arrived for the session.
“One of the first things the granddaughter said was, ‘We weren’t sure if we were going to come, because we thought she’d be embarrassed,’” he said. “We need to reach these people who haven’t been reached yet.”
Capron, who has also had a dementia-related diagnosis, said Memory Works is trying to get the word out about dementia in a “healthy way.” He said getting people who might be in senior care to open up and talk about dementia, or move to a memory-care facility, is “a huge leap for people,” and awareness efforts can help more people make that jump.
As awareness and more accurate diagnosis have risen, the senior care industry has responded.
Avita of Stroudwater, which opened in the fall of 2013, was one of the first assisted-living facilities dedicated to memory care in the region. Recently, more have been established, including Bellavita at Scarborough and Woodlands of Lewiston, which is set to open in the fall. Avita is also planning locations in Brunswick and Wells.
At the Avita event, there were also six regional architects and designers of memory-care facilities, looking to better understand the needs of dementia patients in designing building layouts.
Capron believes the biggest issue surrounding dementia is the isolation that it can cause, and removing that can help awareness grow.
“Getting them off the couch is the best thing we can do for them to start,” he said. “But that’s just a start.”
He also said an understanding of the nuances and many diagnosis of dementia is key, and says while it has gotten better, people are still often misdiagnosed.
“There are more studies and research on cognitive impairment, but there is still a long way to go,” he said.
Participating in a “virtual dementia tour” recently are, from left, Maxine Whitehouse, Eileen Sanborn and Jan Mitchell. The women were outfitted with headphones and other items to simulate the effects of dementia, part of a growing list of programs aimed at awareness on the subject. Staff photo by Andrew Rice