{"id":5845,"date":"2019-12-10T07:54:55","date_gmt":"2019-12-10T12:54:55","guid":{"rendered":"http:\/\/www.silvercentury.org\/?p=5845"},"modified":"2019-12-17T21:31:49","modified_gmt":"2019-12-18T02:31:49","slug":"researchers-seek-sage-advice-of-elders-on-aging-issues","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2019\/12\/researchers-seek-sage-advice-of-elders-on-aging-issues\/","title":{"rendered":"Researchers Seek Sage Advice of Elders on Aging Issues"},"content":{"rendered":"

In this article, journalist Judith Graham, a contributing columnist for <\/span><\/i>Kaiser Health News<\/span><\/i><\/a> (KHN), writes about the Bureau of Sages, a unique advisory board of elders, many of whom are ill, disabled or have early-stage dementia. Researchers consult them to find out what they need and ask about the best ways to involve older people in research, how to communicate with them effectively, and more. Graham\u2019s article was posted on the KHN website on April 25, 2019.<\/span><\/i><\/p>\n

CHICAGO \u2014 Rachel O\u2019Conor booted up her slides and began posing questions to six older adults sitting around a table: How should primary care physicians support patients and caregivers after a diagnosis of dementia? And what stands in the way of getting adequate support?<\/span><\/p>\n

\u201cPlease speak louder and go slower,\u201d suggested Susanne Smith, a 75-year-old with early-stage Alzheimer\u2019s disease.<\/span><\/p>\n

Smith belongs to the <\/span>Bureau of Sages<\/span><\/a>, a group of vulnerable seniors who advise researchers about what matters to older adults, how to involve them in research about aging and how to communicate with them effectively while doing so. It\u2019s a groundbreaking program: traditionally, ill, disabled and cognitively challenged older adults have been excluded from research and assumed to be too compromised to offer useful insights.<\/span><\/p>\n

\u201cThe recognition that this population has something meaningful to contribute\u2014that\u2019s really unique,\u201d said Robyn Stone, a former adviser to the Sages and senior vice president of research at LeadingAge, a national organization of nonprofit providers that focus on aging.<\/span><\/p>\n

Everyone who works with older adults would do well to pay attention.<\/span><\/p>\n

Sages groups are housed at several locations. At the Lieberman Center for Health and Rehabilitation, a nursing home in Skokie, a Chicago suburb, nearly a dozen residents meet every two weeks to discuss academic studies, issues they encounter in their daily lives and potential research projects. A similarly sized group of frail, homebound seniors in Chicago\u2019s northern suburbs gets together virtually, via the internet.<\/span><\/p>\n

At Northwestern University\u2019s downtown medical campus, seven adults with dementia gather every couple of months at the Mesulam Center for Cognitive Neurology and Alzheimer\u2019s Disease to offer feedback to researchers.<\/span><\/p>\n

On this sunny day in mid-April, Jim Butler, 70, acknowledged it took him 18 months to accept a diagnosis of mild cognitive impairment and speak openly about it. Karen Finesilver, 68, who has Lewy body dementia, stressed the importance of bringing someone along to doctors\u2019 appointments. \u201cWhen I hear something that makes me nervous, I don\u2019t retain it,\u201d she explained. And Smith spoke of how important it is to feel heard by her physician: \u201cOne of the best things is when he actually listens to what I\u2019m saying, because a lot of times doctors may know what\u2019s going on but they do not listen.\u201d<\/span><\/p>\n

It\u2019s the only time people here talk to you like you have a brain left.<\/b><\/p>\n

\u2014Sharon Koretsky, 73, on why she loves the meetings with researchers<\/b><\/p><\/blockquote>\n

O\u2019Conor, an assistant professor at Northwestern\u2019s Feinberg School of Medicine, had started the conversation by asking about problems that patients and caregivers face. After the discussion, she said she would focus more on \u201cwhat helps people build on their strengths\u201d because \u201cthe resilience and positivity of people really stood out today.\u201d<\/span><\/p>\n

The Bureau of Sages has received two rounds of funding totaling $500,000 from the Patient-Centered Outcomes Research Institute (PCORI), an organization that sponsors innovative projects that include patients in setting research priorities, designing research studies and evaluating their impact.<\/span><\/p>\n

Unlike occasional surveys or focus groups, a standing group like the Sages can provide \u201cvaluable ongoing context about individuals\u2019 lives\u201d that sharpens research and makes it more relevant, said Kristin Carman, PCORI\u2019s director of public and patient engagement.<\/span><\/p>\n

At the Lieberman nursing home, on another April afternoon, two researchers\u2014a physician and a biomechanical engineer\u2014presented a project they\u2019re working on to nine seniors, most in wheelchairs. Their prototype device would help people with compromised mobility stand up from a sitting position, a task that requires a surprising amount of coordination and strength.<\/span><\/p>\n

\u201cWould I be able to use this [device] if I can\u2019t straighten my leg out all the way?\u201d asked Sharon Koretsky, 73, who has diabetes and severe osteoarthritis and can no longer stand on her own. \u201cIf your muscles are atrophied, would this help improve your condition?\u201d wondered Fern Netzsky, 76, who has had multiple sclerosis for 35 years and can no longer stand or walk.<\/span><\/p>\n

Both women use what\u2019s known as a \u201csit-to-stand lift\u201d\u2014a clunky device that helps people transfer from a bed to a chair or from a chair to a toilet seat and that requires two aides to maneuver it. Another commonly used device is a Hoyer lift, which uses a sling to help people rise.<\/span><\/p>\n

\u201cI hate the Hoyer: they pull it between your legs and you lay there like a big sack of potatoes with your butt hanging out,\u201d Koretsky said. Anything that someone could strap on themselves and that could help people get up more easily with only one aide\u2019s help would be a \u201cwonderful idea,\u201d she added.<\/span><\/p>\n

One group of Sages wants researchers to investigate better training for certified nursing assistants (CNAs).<\/b><\/p><\/blockquote>\n

As other Lieberman residents chimed in, it became clear they wanted help with walking, not just with standing. They wanted to be able to use the device outdoors, as well as inside the facility. And safety was essential. \u201cI would be willing to try this if I was assured I would not fall and if there was enough protection around me,\u201d Netzsky said.<\/span><\/p>\n

The researchers, who asked not to be identified because they are working on this project outside of their full-time jobs, said they found many of the comments helpful. Older adults are often assumed to be resistant to using technology but this group seemed quite open to technology that improves their quality of life, the physician observed.<\/span><\/p>\n

After the meeting, Nancy Weinberg, 96, another participant, described a communication gap between researchers and nursing home residents when the Bureau of Sages began. \u201cThey were speaking \u2018researchese,\u2019 and I didn\u2019t have any idea what they were talking about. Now they understand we don\u2019t want to hear jargon, and they speak our language.\u201d<\/span><\/p>\n

With characteristic bluntness, Koretsky said she loved the Sages\u2019 meetings, observing, \u201cIt\u2019s the only time people here talk to you like you have a brain left.\u201d<\/span><\/p>\n

The Lieberman Sages are now trying to persuade researchers at Northwestern to investigate the shortage of certified nursing assistants (CNAs) and the need to better train CNAs\u2014problems faced by nursing homes across the nation. Amy Eisenstein, director of the Leonard Schanfield Research Institute at CJE SeniorLife in Chicago and the project\u2019s principal investigator, is working to expand the program to other locations, including Miami University in Oxford, OH, and the University of Massachusetts, Boston. CJE SeniorLife, sponsored by Chicago\u2019s Council for Jewish Elderly, provides a variety of services to seniors and is the Bureau of Sages\u2019 original sponsor.<\/span><\/p>\n

(Materials that can help any organization launch a Bureau of Sages are available at the Council for Jewish Elderly\u2019s <\/span>website<\/span><\/a> under the \u201cResources\u201d section.)<\/span><\/p>\n

\u201cI think that all research on aging needs to include the voices of older adults,\u201d Eisenstein said. \u201cThey are experts about their lives, and we need to incorporate their perspectives to make research better.\u201d<\/span><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Rachel O\u2019Conor booted up her slides and began posing questions to six older adults sitting around a table: How should primary care physicians support patients and caregivers after a diagnosis of dementia? And what stands in the way of getting adequate support?<\/span><\/p>\n

Read more Researchers Seek Sage Advice of Elders on Aging Issues<\/span> ›<\/span><\/a><\/div>\n

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