“I’m worried and frightened,” says Brenda Lee Alschul. At 78, she’s been trying to find a place to live where she can get a little help managing her T1D, which she’s had for 55 years. “I live alone and don’t have family nearby. I don’t know what’s going to happen to me. What if my hands start to shake and I can’t fill up my pump? What if I can’t give myself a shot?”
Brenda definitely isn’t ready for a nursing home, even though it would give her access to full-time medical care. She’s spent more than a year searching for an assisted living facility in her home state of Massachusetts, an interim step for seniors who want to live as independently as possible and don’t need registered nurses on call 24/7.
What she discovered was alarming, but it's the reality that all of us face in growing older with type 1 diabetes on board -– which is looking like an impending trainwreck.
Seniors with Diabetes Are Scared
“There is currently little or nothing in place in assisted living facilities for dealing with aging type 1s,” Brenda says. “The food service people are very willing to prepare meals that fit my eating needs. But the medical staff knows nothing about pumps or multiple insulin injections. They’ve never seen a CGM.”
In fact, in Massachusetts and some other states, assisted living facilities without full-time nursing staffs aren’t even permitted to administer insulin.
I’m worried too, as a 64-year-old who’s had T1D since I was seven. I’m starting to wonder what’s going to happen to me if my mind starts to slip a bit and I need help with counting carbs, adjusting my insulin dosage and making diabetes technology work for me.
While I’d like to age at home with my wife and cats and Netflix, what if I reach a point where that’s not possible?
Lately, that anguished question has been posed frequently in my private Facebook group of Joslin Medalists, who’ve received an award from the Joslin Diabetes Center for living with T1D for 50+ years.
We’re a feisty bunch who’ve used our own smarts and evolving diabetes tech to defy the predictions of early death that most of us heard when we were kids. But now some of us face the scary prospect of living in residential communities that don’t know squat about modern diabetes management.
The Final Medical Frontier: Diabetes Geriatric Care
In one Facebook post, Kay (not her real name), the daughter of a Medalist, described what happened to her 84-year-old mom who checked into an assisted living facility in the South.
The nurses there wouldn’t give Kay’s mom insulin to correct high blood sugars (some of them over 300!). They only provided it at mealtimes. They based her insulin dosage only on pre-meal blood sugars and nothing else (using the “sliding scale” technique that has long been discouraged by endocrinologists). And they wouldn’t count carbs when they planned her meals.
One Medalist responded: “That’s our greatest fear.”
Clearly, that isn’t an isolated horror story. It represents a nationwide problem, as the 'Mine reported in a September overview of challenges facing eldercare facilities that must cope with a growing number of residents with diabetes.
"This is the final frontier when it comes to diabetes care,” according to Dr. Medha Munshi, director of the Geriatric Diabetes Program at the Joslin Center. Staffers in America’s residential facilities for the elderly know “next to nothing” about managing diabetes, she said.
Too Many Nursing Homes Don’t Have a Clue
That’s true not just in assisted living communities, but also rehabilitation centers and nursing homes with full-time staff that are supposed to be able to care for people with chronic diseases. One study of 14 nursing homes found that not one patient received the “standard of care” as defined by the American Diabetes Association.
One Medalist, a hospice chaplain who works in several nursing homes in the Midwest, told me that he frequently encounters nurses aides who don’t accurately report what or how much residents have eaten, as well as nurses who don’t understand insulin dosing. And constant staff turnover makes it hard to retain nursing staffers who do understand.
Linda Hafner, another Medalist, did find a highly-rated nursing home for her mother, who has type 1 and advanced dementia. But she contended with another common problem: two different doctors on the staff “couldn’t get it into their heads that my mom was type 1, not type 2. They just weren’t used to dealing with someone who needed her blood sugar monitored regularly and was insulin-dependent.”
Now 62 and dealing with a variety of diabetes complications, Linda says, “I definitely have concerns about my own future” based on her mother’s experience and the conversations in our Facebook group.
So what can be done about this?
One problem is that the discipline of geriatric diabetes care "barely exists,” Munshi says.
She’s one of the few experts in that field, and is the lead author of a much-needed American Diabetes Association "position statement” that offers guidelines for the “Management of Diabetes in Long-term Care and Skilled Nursing Facilities.” While mostly geared for the larger population of people with type 2 diabetes, thankfully it also gives some recommendations for T1Ds.
It’s clear that not nearly enough senior facilities are following these guidelines. Munshi and some Joslin colleagues tried to help by designing a business model and curriculum for privately owned nursing homes to help staff learn current diabetes management practices.
A few nursing homes participated and their staff members “learned to manage diabetes well,” she said, but the program was discontinued because the financial arrangements didn't work out.
Addressing a Bleak Status Quo
A similarly bleak status quo exists overseas, but as least in Europe several academic and advocacy organizations are dedicated to changing it, including Diabetes Frail and the Older People Diabetes Network, led by Alan Sinclair, the European Diabetes Working Party for Older People and others.
In the U.S., though, improving diabetes management in eldercare facilities isn’t even on the radar screen of the diabetes advocacy community.
So seniors with diabetes -– and/or their loved ones -– are left to their own devices to fight for appropriate health care. It’s often advisable for them to find a health advocate who can help negotiate for personalized diabetes care in eldercare facilities. Kay’s mom, described above, was lucky enough to have a daughter who refused to give up and worked with an endocrinologist and a director of nursing to devise a new, effective care plan.
Another option is to appeal to a long-term care ombudsman, who are in every state and are supposed to address complaints.
But fighting these lonely individual battles is not going to address a more fundamental, systemic public health challenge. Munshi sums it up well:
“We educate people with diabetes to care for themselves. We should be educating nurses, nurses aides, dietitians and physicians at these facilities about the different types of insulin, how they interact with carbs, how to measure the amount of carbs in a meal and other basics.”
These facilities should also change their approach to staffing, especially since many staffers are non-skilled workers untrained in basic diabetes management, says CDE Valari Taylor, who works in this area.
"It is a serious problem for D-Care when a senior is insulin dependent, because (the staff members) are not authorized to administer insulin," Taylor says. "If a senior cannot dial a pen or draw their insulin, as well as administer it, they are not going to get the diabetes self-management they need." She adds that it'd be ideal to see skilled staff at assisted learning facilities, enabled with insulin dosing knowledge and better training to help other staffers understand basic signs and symptoms of high and low blood sugars.
All great ideas. I can’t find anyone out there, other than a few heroes like Dr. Munshi, trying to make it happen. When I reached out to a physician familiar with health policy advocacy for some advice, she said, “This needle isn’t going to move unless diabetic seniors start demanding change and making more noise.”
She’s right. This article is a loud cry for help -- or at least a call to action.