A website for older adults by older adults
Jane Curry, of Chicago, settled into a retirement community a few years ago, where she found friends and support. It was part of her preparation to age in place in a home of her own. But the now-75-year-old widow knew that taking a fall could play havoc with her ability to stay in her second-story condo.
“My balance is off more as I’ve gotten older,” she admitted. “That frightens me.”
At 14, Curry developed a rare form of cancer in the connective tissue of her wrist. In the 1950s, her only option was to have her left arm amputated. “I was so young when it happened that I adapted and I’ve been able to live my life without thinking about it too much,” she said. But now, Curry worries that being an amputee increases the likelihood she could take a tumble.
“I had the fear, but not the plan” for what to do about it, Curry said.
That changed about three years ago, when she volunteered to be on a panel of 70 older adults who met in focus groups with Dr. Lee Lindquist, chief of geriatrics at Northwestern University’s Feinberg School of Medicine. The panel’s work resulted in a website called Plan Your Lifespan, a free resource that prompts older people to plan for predictable problems like falls and to communicate in advance about their preferences on how to handle them.
Relieving the fear of having no plan for aging
Curry’s risk may be higher than others her age, but falls are a common — and often devastating — occurrence in the aging population. According to the Centers for Disease Control, falls are the leading cause of fatal and non-fatal injuries for Americans 65 and older. So Curry’s perspective became an important element to weave into the Plan Your Lifespan site, which was created through a partnership of the federal government’s Patient-Centered Outcomes Research Institute and Northwestern’s Feinberg School. The site went live in December 2015.
“We saw many older seniors who were living on a cliff. If one thing went wrong, their whole world would turn upside down. But they didn’t want to think about that,” Lindquist said. “At the same time, many feared being a burden to loved ones as a result of not planning.”
Lindquist and her investigators quizzed their panel about events that would disrupt even their best-laid plans for the last chapter of their lives. Based on that input, they went to work, producing an online resource that allows older adults to walk through those eventualities and think about how they would manage a hospitalization, a fall or developing dementia.
Plan Your Lifespan lets people type in the action steps they would prefer to take. They can store their responses online and print out a copy. The site also asks users to specify which people in their lives they want to help them with certain issues — for example, evaluating whether they should continue driving or managing their finances if they develop memory problems.
“We came up with a practical way for seniors to make concrete plans now that will help them in the future,” Lindquist said. “It’s all there when these situations actually arise and everything starts happening fast.”
Misconceptions about what older users would want
The site was built, and then rebuilt, with an eye to keeping the content practical, concrete and easy to use. What it lacks in cyber-flashiness it makes up for in elder friendliness.
“I had misconceptions about what the users would want,” Lindquist admitted. “We went back to our senior stakeholders and found out that they hated the layout that I thought was so pretty.”
The final version is presented in a high visibility font: black-on-white for easier reading. Users click to progress from screen to screen; Lindquist learned that many older adults lack the dexterity or skill to make the scrolling motion. Short videos on each topic are embedded for easy viewing, with real-life stories of preparing for each situation.
“We didn’t have money for actors, so we went back to the people from our focus groups for the clips on the website,” Lindquist said. “Seniors talking to seniors to explain the steps they’ve taken. They were very effective.”
One of the videos features Curry, who explained how she sat down with her daughter-in-law to spell out what she would want if she ever needed long-term care.
“We got into it so much as, ‘If you’re in a nursing home or if you’re in a hospital room, do you want to be by a window, do you want to be higher up?’” a smiling Curry said to the camera. “I happen to like traffic. I like to see people going by on the street. I like action.”
Different needs in a smaller community
Although the research team was based in Chicago, the site’s creators also sought feedback from older adults more likely to live in houses than high-rises. Chris Forcucci, a nurse leader with Indiana-based Aging and In-Home Services, was recruited to talk to elder advisers from Fort Wayne and surrounding rural counties.
”Our population is more likely to need a plan for grass cutting and snow shoveling, so they can stay in their homes. They have fewer transportation options than in a city,” Forcucci pointed out. “There’s also a faith component that did not surface with older adults in Chicago. The seniors here want to plan how they can get to church if they can’t drive.”
Since beginning her work with the project three years ago, Forcucci, 59, has become the caregiver for her parents. That’s given her the chance to put the Plan Your Lifestyle site to use.
“It’s a communication starter, and these are not easy conversations to have,” she said. “We’ve printed it out page by page, then talked about it and saved it.”
So far, users in 36 states have logged on to Plan Your Lifespan. Lindquist continues to collect feedback from users and will rely on it to update the site and make it more responsive.
“I think a lot of times seniors are treated like they don’t have opinions. Actually, they have a lot to say about their options,” she said. “But they need to communicate what they want to the next generation or they will all have to fly by the seat of their pants.”