There were moments that were particularly difficult for Susan Carr in navigating her husband's journey with Alzheimer's — taking his Mustang car keys away and his wandering for miles during outings, for instance. But once she began to get ill, losing the ability to take care of even herself, she knew she had to find respite and moved her husband to an assisted living facility permanently.
"Jim is the least likely person you think would get this," she said, sitting in his small turquoise and blue-themed room at Mountview Senior Living Center, with tears welling up in her eyes. "All the things they say to do, he did. He did crosswords, he played tennis, we had a socially engaged life, we traveled. And it still happened. Why?"
The slow and painful process of losing the man she married is heartbreaking, she said. But in moving her husband to Mountview Senior Living, Carr found an opportunity to help him and others living with or affected by Alzheimer's.
She met Nancy Russell there and together they founded Dementia Friendly Montrose, a community group based on a nationwide initiative that aims to improve the lives of those suffering with dementia. The group hosted a meeting Wednesday morning at Mountview Senior Living attended by several representatives of organizations like the Glendale Public Library, YMCA, and the Stepping Stones geropsychiatric program at USC Verdugo Hills Hospital.
The local group, which is supported by Alzheimer's Greater Los Angeles, shared updates on what their respective organizations are doing for people living with dementia and went through a Dementia Friends mock training session that educates people about how to communicate with and approach people with dementia.
Dementia Friends is a program launched by the city and county of Los Angeles in partnership with Alzheimer's Greater LA as part of the Purposeful Aging Los Angeles initiative, which seeks to prepare for the rapidly growing older adult population. Other Dementia Friendly cities include Azusa, Redondo Beach, Long Beach and Riverside.
"Making Los Angeles the most age-friendly city in the world means changing the conversation around dementia — because a lack of understanding shouldn't keep us from giving our loved ones the compassion and support they deserve," said Eric Garcetti in a statement announcing the Dementia Friends launch in the county. "This initiative will help us better understand what dementia is, how it affects us and what we can do to make a difference in people's lives."
Dementia is not a specific disease, but rather an umbrella term that describes a range of symptoms associated with memory loss, said Kimiko Kelly community education manager for Alzheimer's Greater LA. The differences between dementia and normal lapses in memory due to aging are subtle, but dementia makes it difficult to perform routine tasks.
Alzheimer's is the most common form of dementia, with about 5.7 million Americans diagnosed with the illness, according to the World Health Organization.
Dementia Friendly Montrose has been meeting since August, but is still finding its footing and identifying action items, Carr said.
Lisa Bricker, a senior care consultant for Care Patrol, which helps place people in assisted living centers, joined Dementia Friendly Montrose for the first time on Wednesday with the intent of sharing her organization's services with the community. Her husband, who is 68, has had Alzheimer's for five years and now lives in an assisted living center.
"It's very lonely," she said, recalling the exhaustion and sadness she experienced when she was her husband's sole caregiver. "Nobody gets it unless you're in it. [Dementia Friendly Montrose] is a way to provide support, so people don't feel so alone."
Carr said in being consumed for caring for her husband, she felt that isolation. Whether it was for convenience or to avoid embarrassment, she stayed in instead of doing her usual activities.
"Early on, I said all I want is one person who is in the same situation who I can talk with that understands what I'm going through," she said. "I happened to find that person. But there are other people out there that are totally isolated."
That can make it difficult for people to network and find resources to help them navigate the illness. Carr and Bricker said they hope Dementia Friendly Montrose encourages community organizations and businesses to create safer spaces for those with dementia and improve their quality of life.
Carr's husband, now 75, has been adjusting well to his new life, she said. The former graphic designer spends his time drawing and painting. Carr is grateful he doesn't have a full understanding of his disease.
"Jim is not going to get better, he's going to get worse," Carr said. "He's the love of my life. My goal is to keep him as engaged, as healthy, as happy, as comfortable as we can."