South Hadley leads the way with a community approach to dementia

South Hadley takes the lead in public awareness

  • Gail LePage, 76, who has Alzheimer’s disease, enjoys time with her husband, Robert LePage of Westfield, at Loomis House in Holyoke where she now lives. Robert took care of her at home for 12 years. DAN LITTLE

  • Robert LePage, 78, of Westfield, helps his wife Gail Lepage, 76, onto a swing set Wednesday at Loomis House in Holyoke. DAN LITTLE—Daily Hampshire Gazette

  • Memories posted on the wall in Gail LePage’s room at Loomis House. Those with dementia often are confused and can struggle with a decreased capacity to use language and memory. DAN LITTLE

  •  Loomis Communities retirement complexes are involved in the community effort in South Hadley. DAN LITTLE—Daily Hampshire Gazette

  • Robert LePage, 78, who now visits his wife daily at Loomis House said that when she was living at home, he had a network of neighbors who were aware of her condition and could help out. DAN LITTLE—Daily Hampshire Gazette

  • Robert LePage, 78, of Westfield, and his wife Gail Lepage, 76, Wednesday at Loomis House in Holyoke. DAN LITTLE—Daily Hampshire Gazette

  • Robert LePage, 78, who now visits his wife daily at Loomis House, said that when she was living at home he had a network of neighbors who were aware of her condition and could help out. DAN LITTLE

  • Robert LePage, 78, of Westfield, and his wife Gail Lepage, 76, Wednesday at Loomis House in Holyoke. DAN LITTLE—Daily Hampshire Gazette

  • Robert LePage, 78, of Westfield, and his wife Gail Lepage, 76, Wednesday at Loomis House in Holyoke. DAN LITTLE—Daily Hampshire Gazette

  • Gail Lepage, 76, enjoys going on a swing set when the weather is nice with her husband Robert LePage, 78, of Westfield, in front of Loomis House in Holyoke. DAN LITTLE—Daily Hampshire Gazette

  • Robert LePage, 78, of Westfield, has lunch with his wife Gail Lepage, 76, Wednesday at Loomis House in Holyoke. DAN LITTLE—Daily Hampshire Gazette

  • Robert LePage, 78, of Westfield, has lunch with his wife Gail Lepage, 76, Wednesday at Loomis House in Holyoke. DAN LITTLE—Daily Hampshire Gazette

Staff Writer
Published: 4/4/2016 3:32:13 PM

Jim Tierney had had some difficulty driving, says his wife, Rachel Tierney. He’d been diagnosed with early-stage
Alzheimer’s disease, the most common form of dementia, and he was having a hard time remembering his way when at the wheel.

But then one day his troubles escalated.

The couple, who lived in Ludlow at the time, had talked about going to the bank together to get some cash, recalls Rachel, 74. “I went upstairs to work on the computer. Twenty minutes later, I came down. He was gone.”

Tierney, a former psychiatric nurse, took quick action. She called the bank — Jim, former superintendent of the Ludlow schools, was well known around town. “He had been there, but he couldn't remember his social security number or account numbers. They were not sure where he had gone.”

One possibility really worried her: the bank was near the entrance to the Massachusetts Turnpike. If he’d driven there, finding him could be a major ordeal. So she called the police.

Fortunately the bank called 10 long minutes later. He had returned. His car was parked across the street.

“The minute he saw me, he said, 'I'm in trouble, aren't I?' ”

Calling on the community

That type of confusion isn't uncommon for dementia sufferers, and it's hard for others to know how to help. Those with dementia are often scared or agitated, uncertain what's happening to them. And those around them are often embarrassed on their behalf, or unsure what to do. Being part of a community that understands can provide some comfort, says Tierney.

That's why, six years after her husband’s death and a move to South Hadley, she spearheaded an effort to make South Hadley a “dementia-friendly community.” The idea is to educate the people who are most likely to come into contact with dementia sufferers — first responders, town officials, business people — about how to treat them, as well as spreading awareness to the whole community.

Tierney, along with representatives of Loomis Communities retirement complexes and O’Connell Care at Home, which provides at-home care for seniors, got to work last spring with a long list of local collaborators from the town, the chamber of commerce, churches and health organizations.

So far, there have been a handful of workshops, led by well-informed volunteers and geriatric care professionals, for friends and families of those with dementia, and one workshop for police and firefighters, who are often called to assist families.

The goal is to have systems in place for town employees to rely on if someone comes in and it looks like he or she need extra support,” said Carol Constant, director of community engagement for the Loomis Communities. One thing the organizers have done so far, she said, is have business cards made that list resources. “They have phone numbers for the Council on Aging, the Alzheimer's Association, West Mass Elder Care, and O'Connell Care.”

Tierney, who lives in Loomis Village, part of the Loomis Communities, heard about the concept through her involvement in Alzheimer’s fundraising events. The dementia-friendly community movement had caught on in the U.K., Australia and other locales, she learned, including Westfield, which turned out to be the first of its kind in the eastern United States.

Tierney found willing supporters when she approached Constant about Loomis leading a similar undertaking in South Hadley.

“We called a meeting with the town administrator, the fire chief, the police chief, members of the faith community. ...” Constant said. “We said, ‘Let's just think about this concept, see how it resonates with the community.’ We asked everyone to introduce themselves and tell us about an experience with someone with dementia. It filled the hour.”

Numbers growing

Dementia affected an estimated 35.6 million people worldwide in 2010, according to a 2013 study published in the journal “Alzheimer’s and Dementia,” and that number is projected to double every 20 years.

The biggest risk factor is age, so dementia is likely to get more common as the large population of Baby Boomers hits retirement.

According to a  2013 study by John Hopkins Medicine in Baltimore, Maryland, around 70 percent of dementia sufferers are able to continue living in their communities, though those with the most severe symptoms usually need care in a specialized facility.

While people often associate the term dementia solely with Alzheimer's disease, Alzheimer's is only the most common cause of it. Dementia is actually a category of symptoms, all products of damage to the brain. That damage can be caused by overt trauma, like a head injury, or by disease.

Other common forms of dementia include Lewy body dementia — a relative of Parkinson's Disease that often causes hallucinations, acting out dreams, and mobility problems — and vascular dementia, the result of reduced blood flow to the brain via conditions such as stroke.

Dementia’s symptoms vary according to what part of the brain is affected but all forms involve a gradual lessening of mental abilities, ranging from language use to memory and reasoning.

Dementia also often involves personality changes, prompted not only by forgetfulness, but by the frustration that comes with losing the ability to function.

Tierney describes the mind's layers of function like those of an onion. It begins with the very basic functions of infants and gradually accrues new and more sophisticated skills, not only to do with thinking, but also with navigating matters of politeness and propriety.

“Dementia,” Tierney said, “unwraps that onion, starting with the highest-level functions.”

That leads to lack of inhibition, and even to aggression.

Tierney's husband, for instance, would sometimes act on his love of children by reaching for strangers' infants. And when a 24-hour caregiver first arrived at their house, Tierney said, “He literally chased (the caregiver) out the door and down the street with a rake.”

The circumstances kept getting worse. Eventually, “He would look in the mirror, and he thought it was someone else. He would pound on the mirror. I had to cover all of them.”

Neighbors pitch in

Bob LePage, 78, of Westfield has seen similar changes in his wife, Gail, 76. She first had difficulties in her early 60s, and now resides in the dementia care unit at Loomis House in Holyoke, just over the line from Easthampton.

At first, he said, it was little things like her not knowing which drawer to put the silverware in. LePage became her caretaker as things got worse.

In part, he was able to do that job because the community played a helpful role. “I was real friendly with just about all of my neighbors. They were all aware. I told them, 'If you see her, grab her, give me a call.'”

One day she did wander away from home, and that neighborhood network was there to lend a hand.

That kind of awareness is what the dementia-friendly communities effort means to foster.

In South Hadley, it began with training for first responders, who are often called upon to find or aid those with dementia.

“We had training that was a little different for friends and family,” said Constant. That training focused on how to talk to and assist dementia sufferers in their everyday activities like going to church, to businesses, or town offices.

Training community members and increasing their awareness often involves recreating, to some degree, the experiences of elderly dementia sufferers. In Westfield, that included altering trainees' senses via modifications like taped fingers and gloves to simulate decreased dexterity, and dark glasses to simulate visual difficulty. Videos on Westfield's dementia website show participants trying, with these artificial impairments, to complete tasks like paying bills, fixing lunch and getting dressed.

Different approaches

In South Hadley, first-responder training involved role-playing, says Fire District 2 Chief David Keefe. The training is particularly helpful for the EMTs who staff the ambulances, he says. Likewise, South Hadley Chief of Police David LaBrie says training has offered his officers additional resources.

“We deal with things like family disputes that might happen because someone has dementia, or a motorist who’s pulled up to a closed gas station in the middle of the night because they think they’re getting gas, LaBrie said.

Keefe noted that there are a large number of older people living in South Hadley. “Dementia is a reality in our community,” he said. Ambulance crews, he added, tend to be made up of young people, 25 to 35 years old, and many have not had a relative with dementia. “They didn't really know a lot about how to recognize dementia, and how to deal with that.”

Sometimes the first instinct in dealing with a dementia patient isn't particularly helpful, says Keefe.

“For example, a lot of times people believe if someone doesn't understand, if you just talk louder and louder, they’ll get it. But a person with dementia, they're just not understanding what you say, and no matter how loud you get, they're not going to understand it any more.”

Instead, Keefe says, the EMTs now know to rely on skills beyond their take-charge, get-it-done methods. They might simply slow down and listen, and in some cases find non-verbal ways of communicating, he says.

Similarly, if someone with dementia is experiencing hallucinations or delusions, it's often counter-productive to try to correct their ideas, according to Tierney and LePage. That often increases their anxiety. “Sometimes they just babble on. You just say, 'Yeah, good job,' ” said LePage.

Other tips the program offers are ways to talk with someone who needs help, Constant said. “You slow down with them. Make eye contact. Identify yourself. Set a positive mood, and be respectful and patient.”

A lot of times, dementia sufferers can't find the right words, so what they say isn't always what they mean. To help with that, Constant says, “Follow facial expressions and tone of voice. State your message clearly and simply. Ask simple questions.”

Those involved in the South Hadley effort also hope to establish a registry of patients via the police department and work with the town on accessibility issues such as making sure there are sufficient sidewalks, and providing public transportation.

Other efforts

Following South Hadley’s lead, the city of Holyoke has expressed an interest in establishing a dementia-friendly community, according to Constant. And many Valley organizations have dementia support groups and workshops for families, caregivers, and patients. At Loomis, a caregiver-focused series of workshops begins Thursday, and a monthly support group, open to the public, meets Wednesday. Other organizations with such programs include West Mass Elder Care and the Council on Aging. For a calendar of such events, visit dementiafriendlycommunities.org.

But despite all of these efforts, those whose loved ones are struggling with dementia know that medication only slows the inevitable. Eventually, Alzheimer's and its cousins rob people of the ability to interact with others successfully.

For LePage, after 12 years, caring for his wife at home finally became too much, even with the help of his children.

“You just can't believe how a life can change,” he said. “(Gail) doesn't know her daughters any more. She knows me, because I'm there every day, but I don't know what I'm walking into.”

Some days, he says, she waves when she sees him coming. Other times, Gail and others in the dementia unit wander the halls. “She's got that stare — like it goes right through you.”

In many ways, dementia eventually resembles a regression to childhood. Often, says LePage, his wife is scared that he isn't there, even when he's pushing her in a wheelchair. “I just give her a hug. I hold her hand all the time. I tell her, 'I'm right behind you. I'm not going anywhere.'”

James Heflin can be reached at jheflin@gazette-net.com.

 




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