With aging populations, support of patients and caregivers is more important than ever, experts say
by Gabby Landsverk, Sun Sailor Newspapers
Fold and button the blue shirt; feed the dog; take Thursday’s pill and count out 37 cents from the wallet.
For most people, these tasks are simple. But for someone with dementia, these every day objectives can become an insurmountable source of confusion, frustration and anxiety.
Dementia is a broad term referring to the symptoms of various ailments that cause the brain to degenerate, such as Alzheimer’s disease or a stroke. These include memory loss, problems with reasoning or judgement, difficulty communicating and impaired attention and focus.
In the Dementia Live experience, participants are instructed to wear a set of thick gloves, dark glasses and specialized headphones to simulate the experience. A cacophony of seemingly-random dialog plays from the headphones, nearly drowning out the instructor listing the tasks to be performed. The glasses obscure peripheral vision and make it difficult to focus or navigate the room. The gloves make even the most familiar objects difficult to manage; buttoning a shirt or separating coins becomes nearly impossible.
Dementia Live and similar educational presentations are part of a growing effort in Minnetonka and Hopkins to use education and awareness to make those communities more hospitable to people struggling with dementia.
Gail Skoglund, director of adult day services at Augustana Open Circle, said that Augustana is leading the effort to make Hopkins an official dementia-friendly community, thanks to a recent grant. Augustana was one of five care organizations in the state to receive the funding.
“What we’re doing here is part of a state-wide initiative, and we’re just at the very beginning,” Skoglund said.
The $7,000 grant will fund the first steps of assessing the community’s needs, collecting data and deciding how best to implement solutions that fit the diverse groups of people in Hopkins.
“We’re trying to identify the gaps and connect people with resources,” Skoglund said.
There’s also a great need for support, both for caregivers and patients, that is culturally-sensitive and widely accessible, said Kelly Morgan of Augustana’s Chapel View campus.
“We have some up-front work to do,” Morgan said, explaining that an effective approach needs to be inclusive, addressing the huge diversity in race, religion, language and socioeconomic status present in the community.
Similar efforts are underway in Minnetonka, following the lead of nearby communities such as St. Louis Park, according to Steve Pieh, staff liaison for the Senior Citizen Advisory Board.
“It’s in the beginning stages. We’ve been working with community groups like the YMCA, the Ridgedale and Minnetonka libraries,” Pieh said. “What we’ve started to do is have groups of volunteers go through training to be available to anyone in the community, businesses, places of worship, whoever it might be, to learn helpful hints for communicating with and understanding people with dementia.”
Other target groups include first responders as well as management and employees of local businesses, so these groups can best sometimes-difficult situations involving customers or clients with dementia.
“We’re wanting businesses and different organizations in town to go through that hour training. It’s a free service and we think it could really benefit them and their clients,” Pieh said.
The programs in both cities are based on Minnesota’s Act on Alzheimer’s program, with additional resources from other nation-wide organizations.
“What’s neat is that it’s at a national level. You’re not needing to come up with this program from scratch,” Pieh said.
Dementia isn’t an illness in itself, but rather a symptom of other problems, especially those associated with aging. It is caused by damage to brain cells, which is permanent and can worsen over time.
As such, there is no cure, but only ongoing treatments to help patients manage daily tasks more comfortably.
Kim Stender, a master trainer in the Dementia Live education program, walked participants through a debriefing after the experience, explaining how the experience can contribute to a better understanding of what dementia patients are going through, and how to help them.
Typical side effects of dementia are depression, anxiety or social alienation. This often combines with other mental and physical problems associated with aging, leaving patients in need of complex and individualized care.
“Rarely do people come in with just dementia,” Skoglund said.
Stender explained that behaviors which can be confusing or upsetting for caregivers make sense upon better understanding of dementia.
“If they’re acting up, something is wrong in their world and they’ve lost the ability to tell you what it is,” she said.
Many patients, for instance, talk to themselves as means of staying grounded in an otherwise unfamiliar situation when they’re unable to remember where they are.
“The sound of a person’s own voice is one of the last things they recognize,” Stender said.
Some simple tips Stender offered include making eye contact to engage people with dementia, listening carefully and validating what the person says and gently reminding them of what’s going on as often as needed.
“Tell them who you are and what you’re doing so often that someone walking by would think you’re the one with the problem,” Stender said.
She added that while it can be difficult to repeatedly answer the same questions, it’s best not to argue with patients. Instead, she suggests redirecting their attention. For instance, if a patient asks to speak to a deceased relative, gently prompt them to talk about pleasant memories of that person, which can help ground and comfort people with dementia.
“We would love for everyone to get this kind of training because at some point in your life, it’s very likely that you’ll interact with someone who has dementia,” Stender said.
The need for this kind of education is clear, Pieh said.
“Just the numbers are amazing. They’re estimating one in three over (the age of) 85 are impacted by dementia,” Pieh said. “The goal really of all these programs is increase awareness.”
A large part of the work is decreasing the stigma associated with dementia, Stender and others agreed.
“At our health fairs, 80 percent of the people will walk by when we’re handing out information on dementia. We don’t want to think about it,” Skoglund said. “The rest of people, they’ll sort of look at the ground and say ‘Well, I guess I might need help with that.’ There is such a stigma.”
This includes explaining the difference between ordinary effects of aging, and Alzheimer’s disease or other forms of dementia, Morgan said.
For instance, elderly people may occasionally have lapses of memory from which they eventually recover, she explained. Prolonged or frequent disorientation, difficulty communicating, or memory loss can indicate a more serious problem, Morgan said.
Often in these cases, patients or relatives may be reluctant to see a doctor for a formal diagnosis, even when it’s clear something is wrong.
“No one ever wants to be diagnosed with dementia. It’s a very difficult thing to hear,” Skoglund said. “There’s no turning back from that point.”
She said the diagnosis can often affect relationships, causing the patient and their family members to withdraw from social situations, which can become a source of anxiety or embarrassment.
“Dementia is a very isolating disease,” Skoglund added, both for caregivers and for patients.
Part of the effort to support both groups is by providing outlets for both social and educational interaction, Pieh said.
“For folks that have dementia, it becomes harder for them to manage social interaction and having a support system for them has worked very successfully,” Pieh.
Activities planned in Minnetonka for 2017 include guest speakers at the local libraries, as well as a future “memory cafe” style of program.
In Hopkins, community leaders are in the early stages of deciding how best to use the grant funding, beginning with a community needs assessment.
“We don’t know what that looks like yet. It’s a community process,” Skoglund said, adding that the first community meeting will be in January to provide more details on the next steps of the project.
She said once needs and possible solutions have been determined, the community can begin implementing solutions; Skoglund said Augustana plans to apply for a second $7,000 grant later in 2017.
The long-term goal, she added, is to cultivate solutions that will be sustainable in the future, far beyond when the grant funding runs out.
Getting as many community members involved and building a strong foundation for a dementia-friendly city is key, she said.
“You look at the resources we have and the diversity in our country, our state and our community … now is the time,” Skoglund said.
Stender said the ultimate goal is for people with dementia to be supported throughout the community so they can receive the care they need; every person that understands what dementia is and how to help is a step closer to achieving that goal.
“People with dementia deserve the same dignity and respect as anyone else. Their reality isn’t the same as ours and we have to respect that,” Stender said. “What a blessing to be able to help them.”
Contact Gabby Landsverk at [email protected]