Are You Being Helpful or Ageist to People with Dementia?
Offers of support may be perceived as bias
A few years ago, Angela Lunde, a leader in patient and caregiver education for the Mayo Clinic Alzheimer’s Disease Research Center in Rochester, Minn., sat at a table between two people who live on opposite sides of a dilemma.
On one side of Lunde was a man with early- to mid-stage Alzheimer’s disease. “He said, ‘What I really want from my community is I want somebody to feel comfortable coming up to me when I’m out and about and asking me if I need help’ if he looked confused,” Lunde recalled.
On her other side sat a college-age woman who responded to him: “But I sometimes am not sure I’m supposed to do that, because I may be implying [that you can’t figure things out] and it may offend you.”
That disconnect is common between people living with a cognitive impairment and those who encounter them at work or in the community. It’s important to overcome this, Lunde said. For people with impairment, social isolation and its negative health effects is a risk.
“Their ability to have good interactions is really the difference between somebody living with dementia who still feels they can go out and be part of their community and somebody who has a bad experience in a restaurant and begins to exclude themselves,” she said.
Dementia or Mild Cognitive Impairment?
Dementia is part of a hurtful stereotype of older adults. So it’s no wonder people fear giving insult by offering unneeded, unwanted help to someone who’s just fine, thank you.
About 10 to 12 percent of people 65 and older have dementia, said Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center. Dementia is not synonymous with Alzheimer’s disease, as many people believe. Instead it’s a set of symptoms that center on impaired memory and thinking, for which Alzheimer’s is one possible cause. The rate of occurrence goes up with age.
“At 65, it’s maybe only 2 percent [of people] or less,” Petersen explained. “At 85, it’s maybe 35 to 40 percent.” Even at that, it’s risky to assume anything about a person’s cognition based on age, he acknowledged. A dozen 85-year-olds can be at a dozen different points on a spectrum of physical and cognitive abilities.
3 Distinct Groups
Petersen is part of a research group at the Mayo Clinic that added another layer of nuance to what’s known about dementia. Roughly 20 years ago, conducting a large population study of older adults, they realized they were seeing three groups of people. Some had no cognitive impairment. Some struggled with dementia.
“But there was a swath in the middle of people who were just a little bit different,” Petersen said. “They weren’t remembering as well as they used to, but otherwise they were just fine,” still able to carry out all their day-to-day functioning. The Mayo researchers helped define a new diagnosis, mild cognitive impairment (MCI), which often, but not always, progresses into dementia.
“The MCI person’s degree of cognitive impairment is inconvenient.… It makes them less efficient, but they can [function independently],” Petersen said. “Whereas the person with dementia can’t do it, they need somebody else to help them.”
At Work: Keep the Focus on Performance
Efficiency counts in most jobs and so does functioning independently. With many people working or planning to in their older years, cognitive impairment is increasingly a workplace issue. Petersen said that among people 70 and older, if you combine those with MCI and those with dementia, it amounts to “one in three or one in four” people.
“Discuss the performance, not the person” if there’s a need to talk about cognitive issues at work, advised Beth McFarland, program director for the Society for Human Resource Management Foundation, whose projects include educating employers about the value of older workers. The focus should be on tasks, results and what the employee needs in order to perform well, not on age or health. Ideally, it’s a discussion the employee initiates, she added.
Under the Americans with Disabilities Act, “employers are not supposed to bring up a disability,” McFarland explained. That’s true whether it’s an impairment of hearing, mobility, cognition or something else. But if an employee brings up the topic, “that opens up the door to discussing reasonable accommodations,” which the employer is obligated to make, she said.
Examples of accommodations are putting instructions in writing so the person can refer back to them, giving reminders of meetings and deadlines or adjusting work hours or responsibilities. The Society for Human Resource Management has published guidance on “Coping with Cognitive Declines at Work.”
The Job Accommodation Network, a cooperative project of the U.S. Department of Labor and West Virginia University, also offers a guide for employers and employees on ways to accommodate cognitive loss.
In the Community: ‘Just See a Person as a Person’
Even in families, it can be hard to know when to step in and help someone with dementia.
When people ask Petersen whether it’s better to intervene or let a family member with dementia maintain a sense of independence by getting past a hurdle alone, he suggests letting the person “try to the point of frustration,” then stepping in with warmth and maybe a bit of humor and commiseration — saying something like “I forget how to do that half the time myself.”
“That’s what the dementia-friendly community concept is,” Petersen said. “To get organizations… to just be aware that some people may need a little support in doing this, that or the other, without singling them out, without making them feel different from everybody else.”
Lunde said she’s learned to err on the side of risk and offer help whenever someone looks perplexed in the grocery aisle or at a crosswalk or near the restrooms at a restaurant. Most people are appreciative, in her experience. And she doesn’t need to know whether they have dementia: “I just know that signage in general can be confusing. It is for all of us.”
The body language and nonverbal cues of confusion are also basically the same for all of us, Lunde said. “So I think the approach to take is to observe and to offer help without even beginning to think… ‘I wonder if this person is confused because they’re older.’”
It’s when we see age that we censor our own good intentions, she suggested. “Just see a person as a person.”