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?’ ”
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, chambers 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 that town employees can have in place if someone comes in and it looks like they need extra support,” said Carol Constant, director of Community Engagement for the Loomis Communities. She said organizers have had 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.”
Dementia affected an estimated 35.6 million people worldwide in 2010, according to a 2013 study published in “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 Johns Hopkins Medicine in Baltimore, Md., 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.
Though people often associate the term “dementia” solely with Alzheimer’s Disease, Alzheimer’s is only the most common cause of dementia. Rather than describing a disease, dementia describes a category of symptoms. All of them are the product of damage to the brain, and 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.
Its symptoms vary according to what part of the brain is affected, but all forms of dementia involve a gradual lessening of mental abilities, ranging from language use to memory and reasoning.
And, it also often involves personality changes, prompted not only by forgetfulness, but by the frustration that comes with losing the ability to function.
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. Twelve years in, the job got to be more than he could handle.
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 aims to foster.
For LePage, helping his wife 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 anymore. 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.’”