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anice Long had her doubts initially, but she is definitely a convert now.
The Hudson Council on Aging Director admitted she was skeptical when first approached about participating in a project to create dementia-friendly communities in MetroWest by BayPath Elder Services, Inc. Executive Director Christine Alessandro.
“I wasn’t 100 percent on board at that first meeting,” said Long in her office at the Hudson Senior Center. “And it could be because I wasn’t understanding it 100 percent. I felt like we do a lot of grants educating folks for this reason or that reason, and then when the grant money runs out it’s not self-sustaining and it kind of ends. Because I take care of my own mother who has dementia, I see the need for help not in education but in actually getting somebody to maybe give me respite or something along those lines.
“But I went to the meeting and I listened and I expressed my feelings, and it was more personal than professional I think because I am living with my mom to help her,” continued Long. “I love doing it. I love taking care of her, but I can see that families living with this, how much support they do need. After hearing Arthur [Bergeron] and Christine give their explanation of the program, I told them, ‘I’m in.’”
Long joined Alessandro, Bergeron, an elder law attorney and active advocate for elders, as well as fellow COA directors Trish Pope of Marlborough and Kelly Burke of Northborough in taking the lead in BayPath’s program to create dementia-friendly communities in their three towns in a project funded by a grant from the MetroWest Health Foundation.
But seeing the value in the project didn’t eliminate the practical challenges to Long’s participation, particularly when it came to joining the others on a trip to Minnesota in September to meet with some of the key people from the Act on Alzheimer`s organization who have successfully created several dozen dementia-friendly communities in that state.
“I’m thinking, ‘How in the world am I going to do this? I’ve got my mom. What am I going to do?’” said Long. “So my husband says, ‘Don’t worry. I want you to go.’ So we figured it out. I went, and it was the most phenomenal experience. I can’t say I was initially 100 percent on board, but on our first day of training when I saw the two people [from the Minnesota program], how prepared they were, the knowledge that they had, and the excitement. I think that was the big thing. They were excited about this program and so excited to share what they were able to do and what they were successful in doing. They wanted us to model their program. They were thrilled we wanted to model their program. It was just phenomenal.”
The experts from Minnesota detailed the process of creating a dementia-friendly community, complete with a toolkit that Long said was “almost like an instruction book on how to put this dementia-friendly community together from soup to nuts.” They also described the successes, and some of the challenges, they faced in Minnesota.
“Two [communities] were very successful and one was successful, but not as successful and I say that because they felt they were not able to get their Latino population on board,” said Long. “But still they all felt they were able to educate, inform and train people on how to treat people with dementia.
“People with dementia, they want to feel like they belong,” added Long. “Getting that diagnosis is difficult in itself. They know something’s wrong, but to be treated with respect and kindness. I think a community that is educated and informed is better able to deal with that when their faced with that situation.”
That education is the key to making a community dementia friendly, and that’s what Long wants to see happen in Hudson.
“Wouldn’t it be nice to have retail stores where their employees were a little more sensitive toward people with dementia?” asked Long. “Sometimes I think it’s so simple. I think we underestimate the importance of an act of kindness. People with dementia want to be valued. They want to be a valued part of their family and their community. Bringing an awareness to the challenges of this disease for the person and their family will only help the community.”
And Long believes Hudson is just the kind of tight, close-knit community that is perfectly suited for a dementia-friendly program.
“Hudson is a small community,” said Long. “It’s a friendly community. When I first came to Hudson one thing I kept hearing is, ‘Hudson takes care of its own.’ And I can see that. In the 10 years that I’ve been the director here, I can see that. Hudson really does take care of its own. So to me, this community is the perfect community to launch this type of initiative.”
So far, Hudson has rewarded Long’s faith, as she noted that she is already “90 percent complete in getting my action team together.”
“It’s usually tough to get people to be on committees,” added Long. “But when I explain what we’re trying to do, I was surprised by how many people were, ‘Yes, I want to do this. I know so-and-so with dementia.’”
Finding someone who knows a person with Alzheimer’s or another dementia unfortunately is not hard. Long provided some numbers for Hudson, which has a total population of around 19,000. Long states that as of August, 2015, there were 2,922 people age 65-84 in Hudson. The Alzheimer’s Association estimates that 1 in 9 in that age group will develop Alzheimer’s, which would be approximately 325 people in Hudson. There’s 386 people age 85-102 in Hudson, and 1 in 3 in that age range will develop the disease, leaving another 129 people who will be living with dementia.
“So that’s 454 people right now in Hudson,” said Long. “That’s a significant number for a small community.
“And the number is growing,” added Long. “The disease isn’t going away. There isn’t a cure right now or in the near future. As Arthur Bergeron says, ‘It’s the right thing to do’ to be informed and better treat these families and be sensitive to those needs. Recognize it’s a hard road, and a little act of kindness goes a long way.”
Even with so many people suffering from the disease and many more willing to help, there is still plenty that needs to be done to make Hudson a dementia-friendly community. Long encountered the pain that ignorance can cause when she recently took her mother out for dinner.
“When it was time to order, the waitress asked me what she would like, went right over my mom,” said Long. “That reaction of the waitress was enough to just shut her down. And then after the dinner when it was time to get the check, the waitress said, ‘Oh, didn’t she do a great job with her meal.’ Like you’d say to a child. I was pretty upset. I didn’t really know how to respond. I was upset for my mom, because I could tell there was no respect towards her as an older woman.”
Creating that respect and understanding for people with dementia and their caregivers is what this dementia-friendly community project is all about.
“I think just having the community more informed,” said Long of what she would consider successful implementation of the program in Hudson. “That people [with dementia] feel safe, respected, and that they can still feel like they belong and are valued by the community.”
And Long’s initial doubts about being able to attain that success are long gone.
“I feel better informed,” she said. “I feel differently than when I first started it. I feel that it is doable. The disease isn’t going away. There’s going to be more people affected by it. We need to do this.”
Hudson COA Director Janice Long (third from right) poses with the rest of BayPath’s contingent and their dementia-friendly community advisors during their September trip to Minnesota./Photo Courtesy Act on Alzheimer’s