Lois A. Bowers

Three years after her husband’s Alzheimer’s diagnosis, Kim Campbell didn’t know that memory care communities existed. Now she’s on a mission to ensure that other family caregivers of those with dementia don’t find themselves in the same position.

Country music icon Glen Campbell died in August after living with the disease for six years. Kim Campbell shared her past experiences and future plans related to being a family caregiver in a talk during the National Investment Center for Seniors Housing & Care Fall Conference last week. The future seems bright for memory care communities, thanks in part to her efforts.

Alzheimer’s was diagnosed in Glen Campbell in 2011. While in the early stages of the disease, he embarked on a farewell tour with Kim and other family members that would be preserved in the 2014 documentary “Glen Campbell: I’ll Be Me,” which also had a screening at the NIC meeting.

When the tour was over in 2012, Campbell’s disease continued progressing and he started wandering, became more physically aggressive and refused needed help with activities of daily living, Kim said. She put together a team — their daughter, Ashley; son Shannon; a nephew, Matthew; and their daughter’s friend Amanda  — to take turns caring for Glen around the clock, in teams.

“But as time went on, he became more agitated and restless, so I decided to take him to a neurologist for a checkup,” she said. When that neurologist heard about Kim’s depression and lack of sleep, he put her in touch with a social worker who told Kim about options including home care, adult day care and residential memory care communities. She said she hadn’t known about assisted living communities dedicated to caring for those with dementia until then.

“I was shocked,” Kim (pictured) said. “I thought about my wedding vows — for better or worse, in sickness and in health — and I thought about the stereotypical places you’ve seen on TV, the dark, depressing, sometimes even dangerous nursing homes, and I told myself, ‘I would never put Glen in a nursing home.’ All I could imaging was a long hallway with people slumped over in wheelchairs. As his wife, I believed it was my job to take care of him.”

Still, she and their adult children toured places recommended by the social worker and found one that reminded them of a hotel they’d stayed in while on tour. A positive one-day experience with an adult day care center, followed by a night of hard thinking, convinced Kim that it was time for a change.

“The next day,” she said, “our family joined a memory care community. Notice that I didn’t say, ‘I put Glen’ or ‘I placed Glen’ in a home. I said, ‘Our family joined a memory care community.’ Now we were there with other families who understood exactly what we were going through. Now Glen could freely socialize and enjoy beautiful gardens. They had great food there — Oh my goodness, it was amazing — and pets and art and music and all kinds of activities.”

The experience confirmed the benefits of memory care communities and took away some of the guilt she had felt, Kim said.

“I didn’t cease being a caregiver when we joined a community,” she said, “but now my team was expanded and included professional caregivers and 24/7 medical care. I wasn’t breaking my marriage vows. I was keeping them. I was taking care of my husband in sickness and in health.”

Now Kim has started an organization, the CareLiving Foundation, that will work to “improve the quality of life of caregivers by providing help, hope and healing through education, activation and elevation,” she said. Two of those goals, education and elevation, may be especially important to memory care communities.

“Through national awareness campaigns and educational events, CareLiving will work to correct the misinformation, outdated perceptions and stigma surrounding Alzheimer’s and long-term care and will educate caregivers about their various in-home, daycare and long-term residential care options,” Kim said.

Also, she said, “CareLiving will elevate the profile of memory communities across the country that are improving the quality of life for people with dementia, and their families, through exceptional design, leading-edge innovation and compassionate care. By shining a light on the leaders in the industry, we hope to raise the bar so that other communities will rise to the challenge, improve their facilities and their programs and provide a better quality of life for families.”

The foundation follows the launch of the CareLiving blog, which Kim said she started to provide hope and positive messages to family caregivers. After only a year, the blog has gained 25,000 followers, she said. And now those followers and others will be getting positive messages about the senior living industry.

Watch Kim Campbell’s entire NIC Talk below.

Lois A. Bowers is senior editor of McKnight’s Senior Living. Follow her on Twitter at @Lois_Bowers.