“Personalization, for her, meant that her bathroom didn’t look like a hospital,” said Alkema, who, as Vice President of Policy and Communications for The SCAN Foundation, seeks to improve the quality of life for older adults. “Thinking about the longevity market, how can people have choices that don’t look like they’re replicating a hospital environment in their home?”
The goal of person-centeredness—captured in the phrase “nothing about me, without me”—has been promoted for 20 years by those on the cutting edge of change in health care and nursing homes. “There is more and more consciousness about that,” said Alkema. “You have to ask the older adult. You can’t assume that whatever we think they might need, they want.”
The antithesis of the person-centered philosophy became embedded in the culture of nursing homes. Perhaps nowhere did a mindset of standardization and regulation take hold more deeply. The 1987 Nursing Home Resident’s Bill of Rights, meant to protect individual autonomy, freedom and choice, became lost in a thicket of rules that are far more focused on safety than on happiness, said Colorado-based consultant Carmen Bowman, of Edu-catering. Bowman trains those working in nursing homes and assisted living how to transform their organizations to deliver a high quality of life and of care, while still complying with regulations. “It’s too bad we ever created a product [the nursing home] that is now in tension with personalization,” she said. “We should never have created this whole beast we call The Institution.”
The institution “tells you what to do and when,” she said. “It’s not your life anymore…The opposite, which would be person-centered, is the total flip. You would move in and your life would continue.”
In long-term care, for example, this means allowing people to wake to their own natural rhythms rather than rousting them out of bed at a set time. “When you honor that, it’s more efficient,” Bowman said. “If you try to wake me up, I won’t be that happy. You’ll have more work to do to get me out of bed. If they have dementia, they’ll get angry.” Enlightened nursing homes that embrace a person-centered philosophy, Bowman found, demonstrate that “individualized care is better, more efficient care.”
Personalized care also means giving residents opportunities to have meaning and purpose, despite whatever challenges landed them in the nursing home. “People want meaningful engagement, to make a difference,” she said. “My dream is that we’d have so many service projects going on that they don’t have time for bingo.”
Throughout the field of aging, a move toward person-centeredness is slowing spreading. Brad Fain directs Georgia Tech’s HomeLab, a research partnership with 600 independent older adults who try out product prototypes in their homes. “If we’re looking at a new technology or medical device, we take it into the home and get initial feedback,” he explains. “The key part is going in six weeks later and really understanding how this technology was integrated into their life, or not. What were the barriers? Did they fail to use it, did they find it had value? We take that back to the manufacturer to help them understand.”
In one project, the team evaluated seven technologies aimed at tracking fitness. “We were interested in finding out the barriers to use,” he said. “Was this viable for older adults and would they change their behavior?”
One finding was that most participants either over-estimated or under-estimated how much activity they were getting at baseline. The good news was that many of the participants did change their behavior, perhaps taking a longer route to walk to the store or taking an extra lap around the park with their dog.
HomeLab evaluates every step of product use. Is the package or bottle hard to open? Are the directions clear and printed in a font size that’s easy to read? Will a person actually use the product or will it gather dust?
“For a designer, if they’re not exposed to the needs of people with disabilities or functional limitations or even older adults in a technology-relevant way, they’ll design for what they know,” said Fain, rather than for the end user.
Among other insights HomeLab has gleaned: “If the doctor suggests it, then people will accept almost anything,” Fain said. “If they feel the family is forcing it, they’re resistant to almost anything.”
A well-known example is the pendant older people get, to call for help if they fall. “It didn’t really work all that well,” Fain said. “Number one, people were embarrassed to call for help. Number two, they weren’t wearing it when they needed it, or they didn’t want to be identified as someone who was in need of such technology.”
In contrast, the next generation of these systems are being embedded into cell phones or watches that people ordinarily use. “The industry is realizing they need to address the different needs and offer people choice,” said Fain. Individuals want to know “what will it do for me that will let me live the way I want, whether it’s to age in place or connect socially with people I want to connect with.”