How to Best 'Navigate This World' With Cognitive Impairment
Remaining engaged by making connections and finding support is essential
Bruce Willis' wife, Emma, recently released an Instagram video asking photographers to stop "yelling" at her husband — diagnosed with dementia — when he's out in public. She also asked other caregivers "navigating this world" for "tips or advice on how to get your loved ones out in the world safely."
"Everybody was aware of Geri's illness before she was impacted to any degree ... they've all kind of come along with us."
While most people navigating the world of cognitive impairment aren't celebrities, many can relate to Emma Willis' frustration with maintaining a whole and active life while coping with the condition. Yet research suggests it's essential to try.
Loneliness has been linked to an increased risk of Alzheimer's disease and cognitive decline in general. Jim Taylor said one thing that can help those newly diagnosed with cognitive impairment is being open about the diagnosis and sharing the news early.
His wife, Geri, was diagnosed with Alzheimer's ten years ago, and the two have become vocal advocates for Alzheimer's families. "When I talk to people who are newly diagnosed, I share with them our experience," Taylor said.
There's a negative bias associated with cognitive impairment that "does not encourage you to share early," but doing so "helps maintain those relationships and puts people at ease," Taylor said.
"Everybody was aware of Geri's illness before she was impacted to any degree, and I think they've all kind of come along with us," Taylor added. "Socialization and maintaining your daily life and routine and stimulation is critical in the early days" following diagnosis.
Taking Early Action
"In those early years, you have many of the capacities you always had," Taylor said in an interview. "You're just forgetful and probably confused. Maintaining friendships and relationships and going out as much as possible."
Geri Taylor, a longtime health professional — she has a master's degree in public health from Columbia University and was a senior executive at Beth Abraham Hospital and the Jewish Guild for the Blind — suspected something was wrong when she began noticing symptoms, according to her husband.
So when she received the formal Alzheimer's diagnosis, she swung into action. The Taylors developed Memory Advocate Peers, a New York City group that matches individuals with mild cognitive impairment with mentors who have been through the experience of supporting a partner or loved one with dementia.
Jim Taylor said he prefers the term "care partner" to "caregiver" in the early, mild stages of cognitive decline. "The first five years, Geri didn't need care from me, yet I was called her caregiver," he said. "That parlance diminishes who Geri was."
"One of the things we talk a lot about is encouraging people to live well with the disease," Taylor said. "For many, it's just a chronic illness. It's not a fatal illness until the late stages."
The group works with CaringKind, formerly the New York City chapter of the Alzheimer's Organization, to raise funds to recruit and train former "dementia care partners" who have been on the journey and provide emotional and practical support.
Taylor is a big proponent of clinical trial participation, but said that, unfortunately, less than 1% of people diagnosed with Alzheimer's participate in trials and the figure for underserved communities is even less.
"There's an often-overlooked psychological advantage of being in a trial," Taylor said. For example, Geri Taylor was part of a trial for a drug — aducanumab — that became the first Food and Drug Administration-approved disease-modifying therapy for Alzheimer's. The experience gave her a sense of purpose, he said.
It's easy to find a clinical trial. The Alzheimer's Association website is among many that have tools that show which trials are recruiting and where, Taylor added.
The Taylors have done a lot to help bring awareness to the issues associated with cognitive decline, said CaringKind President Emeritus Jed Levine. "I do think it's important as more and more people come out and speak openly about living with the disease," he said in an interview.
A Lot of Feelings
Yet each situation is different, Levine said. He said that only some people are comfortable sharing medical information, and it takes time for families to come to terms with a diagnosis. "I would encourage people to process all of their feelings about the disease, and there are a lot of feelings," said Levine.
"I would encourage people to process all of their feelings about the disease, and there are a lot of feelings."
There's also "tremendous variability" among people with cognitive impairment and changes over time. Some, especially in the early stages of a disease, might prefer to make choices for themselves, while others might have difficulty with time perception and need more help with planning, he said.
"Having any kind of illness, especially cognitive illness, does not eliminate the desire to engage in the world, whatever that means for that individual," Levine said. He said there's an "innate pleasure" to be gained outdoors, whether in the city or the quiet countryside.
Support groups can help, he said. For instance, CaringKind has online resources, as do other groups. In addition, people who connect with dementia care experts tend to manage better than those who don't, he said.
Research bears that out. A 2014 Johns Hopkins pilot program involving 303 Baltimoreans with memory disorders found that those whose families worked with a dementia care team could stay in their own homes about nine months longer than those who got by on their own. They also reported a better quality of life.
The Arts as a Lifeline
Levine said that involvement with the arts is a great way to help people with cognitive impairment remain engaged with the world.
Anne Basting, an English professor at the University of Milwaukee and a Next Avenue Influencer in Aging, agrees. She founded TimeSlips, a program that uses creativity to help people with dementia and their caregivers interact positively.
"We think something's wrong with joyful playfulness; it's somehow inappropriate — when it's the exact, perfect thing to do."
TimeSlips encourages "beautiful questions," Basting describes as "a question that has any answer, or thousands of answers."
"When you get really good at this, you can encourage people to respond in sound, movement or a language they still have if they don't have words," Basting said in an interview at Columbia University's Age Boom Academy. That shifts from "the expectations for memory to the freedom of communication," she said.
"Don't use shared memories" to reinforce a bond with a loved one with dementia because the person probably won't remember a specific situation and will feel bad or defensive, Basting advised.
"If you invite a person with dementia into a conversation based on a single shared memory, nine times out of ten that pathway will get blocked," she said. "You are setting that moment up for failure and shame."
A better approach, she said, would be to ask those "beautiful questions" that can be answered in vague terms or even without words, she said.
Rather than invoking a memory of a trip to a park, for example, "you would say, 'What does a park feel like?" she said, or, "Why go to parks?"
Facilities for adults with dementia often use passive, entertainment-oriented activities like watching television, said Basting, who favors a more active approach.
"We don't think play is appropriate for people we see as kind of wounded," Basting said. "We think something's wrong with joyful playfulness; it's somehow inappropriate — when it's the exact, perfect thing to do."
"Meaning and joy are possible all the way to the end of life, from both sides of the care partnership," Basting concluded.
Editor’s note: This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations, and The Commonwealth Fund.