Kenneth Capron of Portland is frank about the challenge he faces – mild cognitive impairment attributable to two medical conditions.
He says he “hits the wall” after a few hours of concentrating each day, and at age 63 simply isn’t able to work in the accounting and technology fields he embraced during his varied professional career.
But these facts – and the reality that he has symptoms of dementia – are far more motivation than impediment. In fact, focusing on what Capron can’t do would discount a heroic effort. Despite his declining health, Ken Capron is on a mission to give Maine’s most vulnerable population a voice.
He’s doing it with MemoryWorks, a nonprofit organization he founded with fellow advocate Donna Beveridge in February 2013, and which recently received an IRS 501(c) 3 designation. MemoryWorks serves as the umbrella organization for the 14 Memory Cafes around the state. Based on a model begun in the Netherlands in the 1990s, and first established in the U.S. in 2008, these cafes offer a regular gathering time and place for individuals with dementia, as well as their caregivers.
In addition to the cafes, Capron says MemoryWorks is hoping to offer memory screenings at numerous locations in September.
“This will give those who are at least a little concerned about forgetfulness a chance to get a memory screening done by a trained professional without that nasty visit to the doctor’s office,” Capron says.
Screenings will be performed by local health care professionals using the Alzheimer’s Foundation of America’s Community Screening protocols.
But Capron isn’t stopping there. MemoryWorks is also initiating a two-level training program for dementia caregivers, to be offered under the auspices of the Dementia Caregivers Professionals of America. The low-cost program will provide continuing education credit to social workers and nurses, Capron says, and will also be available to non-professional caregivers.
To pursue all of these programs in the long term, Capron says, the organization will need not only to expand its board of directors and raise money, but hire staff. This may include a manager, as well as a staff member, to provide development, marketing and outreach efforts. An additional staff member will be needed to undertake a fourth initiative, a program to collect seniors’ life stories.
At the core of all these efforts is Capron’s commitment to dementia awareness. People with dementia are treated like “second-class citizens,” says Capron, who so far has funded MemoryWorks himself. Thanks to Memory Cafes, he says, communities pay attention to the actual patients and not just those who care for them.
“You can see who really cares about the local community by how much they support extra-curricular activities for people in the community,” Capron says. “It’s easy to go out and pay someone” to create programming, he says. But that assumes financial support. With limited resources, “being collaborative is the natural next step.
“Anything that benefits an underserved population can accomplish so much more with collaboration,” he says.
In the case of Memory Cafes, that collaboration enables gatherings in accessible spaces, with volunteer facilitators and a range of activities and presentations for those who attend. Community senior centers, elder care residential facilities, even coffee shops serve as cafe? sites. The most important quality of Memory Cafes, says Capron, is that they are intended for the enjoyment of those who attend them.
“We don’t make rules,” he says. “It’s their sandbox, and we let them play however they want. We bring people together and let them work it out. It’s the heart of collaboration. It’s important that the people who attend retain control of the cafes.”
Capron acknowledges that as someone who experiences dementia, he is in a unique position: “I’m able to speak from the patient’s standpoint.”
He’s also willing to acknowledge that being a patient and a public speaker can present challenges. For example, he doesn’t like to prepare notes in advance of the numerous presentations he makes.
“If I wing it, and I lose my place? Well, I have a sense of humor,” he says.
More than that, he has perspective and conviction.
“People with dementia,” he says, “cannot speak for themselves.”
Capron says ultimately he envisions a system of services where a “navigator” serves as a hub at the center of the “many spokes” involved in dementia care.
“We have no case management system” for such care, he says. “We need to do a serious job of connecting people with all the spokes in the wheel.”
For Capron, who is divorced with two grown sons, those spokes first included hospitalization and extensive medical testing after memory problems surfaced more than a decade ago.
“My initial problem was with maps,” he says, describing a car trip to New York. After finding low oxygen-saturation levels, doctors at Maine Medical Center sent Capron to Boston, where he was diagnosed with an untreatable sleep apnea traced to the central nervous system. This sleep apnea, combined with diagnosed depression, is the root of his cognitive impairment, he says.
Capron says he consulted both the Alzheimer’s Association and Maine Medical Center’s geriatric center, “but they didn’t seem to be much help.”
After years of waiting, with a “declining situation,” Capron says he decided to “create a forward push.” That push has created Memory Cafes as far away as Presque Isle, with demand for many more throughout the state.
“There’s not a lot for people with dementia,” Capron says. “They have Memory Cafes or they have Oprah.”
Socialization, he says, is far preferable to isolation in front of the television. MemoryWorks has even incorporated Portland Sea Dogs baseball into the mix, sponsoring the second annual “Alzheimer’s Awareness and Caregiver’s Appreciation Day at the Ballpark” in August.
Capron is not only a planner, but also an advocate. He says that of the approximately 37,000 Mainers with dementia, “it was my realization that we’re not even treating 10 percent. Where are the other 90 percent?”
He doesn’t hesitate to criticize the current system of care.
“Shouldn’t it be a priority to identify people” with dementia, he asks? “[The state Department of Health and Human Services] says, ‘If we do that, we won’t have enough people to treat them.’ If our jails are full, will they say, ‘Don’t arrest anyone else?’ ”
“We need to at least ID them and screen them,” Capron says, “then deal with the shortage” of treatment providers. “The state needs to open its eyes to new horizons. It’s time to stop the same-old, same-old.”
Along with his system of navigators, Capron’s vision includes what he calls “pavilions,” offering comprehensive dementia care in each region of the state. These “one-stop shops” could be a place for patients and their caregivers to “go get information, see a doc for screening, have further testing, get OT or PT or just coffee. With pavilions you get all your services in one place,” he says.
Dementia care could also be improved by creating an endowment to help pay off the education loans of medical students committed to returning to Maine to practice geriatric medicine. The same holds for aspiring elder law attorneys, Capron says.
One model for a pavilion-like facility is South Portland’s Cancer Community Center, Capron says. Although it doesn’t offer medical treatment, “it’s a really good example of what can benefit a group of people with the same diagnosis.”
“Memory Cafes are a good start,” he says. “The biggest frustration is that we are starting out new,” without a well-recognized name like Patrick Dempsey or Joan Benoit Samuelson that can facilitate fundraising, he says.
As it is, Capron says, MemoryWorks doesn’t have the resources to meet the current demand for Memory Cafes. In addition, he says, he would like to offer patients a multi-lingual cafe?, as well as a cafe? dedicated to exercise opportunities.
Capron says technology could better serve dementia patients, as well. Google Glass could help with face and name recognition, he suggests, and applications could be developed to offer “one-click” Skype and other technologies that facilitate contact for patients.
“You can’t combine this technology with games and other distractions like Twitter,” he says. “It has to serve that one purpose.”
MemoryWorks, its Memory Cafes and other initiatives “are just the tip of the iceberg,” Capron says. With enough resources, “we could do so much in a year that heads would be spinning.”
But as Capron generates ideas for improving dementia care, he also faces the reality of his own diminishing capabilities. For him, like all dementia patients, there is a grieving process involved.
“You lose little bits and pieces,” he says. “Everything you lose, you grieve about. It’s like losing a finger at a time and being a piano player.
“I never know if it’s going to be a good day or a bad day,” he says, acknowledging that such uncertainty creates vulnerability. “I try hard not to let it get me down, but there’s a constant fight for me against depression. I can’t look at what I can’t do.”
Capron says the biggest challenge for those with dementia is adjusting to the loss of ability to compensate for their decline. His most recent difficulty is with name retention. There is no way to compensate when he doesn’t recognize a face, he says.
Capron says his cognitive deterioration will force him to decrease his role with MemoryWorks. For now, though, he is recruiting additional board members and putting plans into action. As for the long term, Capron says he sees MemoryWorks merging into a larger organization. One nonprofit that has been particularly supportive of the MemoryWorks mission is Port Resources of South Portland, he says.
“It is one of those organizations that is more generous than most,” he says. It has offered space for upcoming training, and also hosts a Memory Cafe in its space.
Yes, Ken Capron has a cognitive impairment. Yes, he concedes his MemoryWorks role may become less active and more advisory. But there is certainly no deficiency in his drive to improve life for others with similar diagnoses, no impairment of compassion or concern or commitment. It is all of Capron’s capacities – those diminishing and those stronger than ever – that are making a difference for dementia patients throughout Maine.
Kristine Millard is a freelance writer who lives in Portland.