When E. Scoyen was diagnosed with type 1 diabetes (T1D), she was told she would not live to reach the age of retirement. She was just 11 years old at the time.
“I was diagnosed in 1966, and was told I had a life expectancy of 10 years, and that I would die of horrible complications,” Scoyen says.
While that prognosis was unnecessarily macabre, Scoyen says T1D care was very different at the time, and she’s just as surprised as anyone that she now qualifies for an AARP card.
Like all patients back then, Scoyen had no way of checking her blood sugar levels with anything but a urine test. She says she also heavily drank and smoked throughout adulthood. She became sober and quit smoking in the 1980s, but she says the damage was already done. She also has a congenital heart defect and suffered a crushed leg in an accident.
Despite all of this, she is now a 50-year medalist through the Joslin Diabetes Center program that studies and celebrates longevity with T1D.
“I proved the naysayers wrong,” Scoyen says. “Just turned 65 and still cruising!”
Scoyen is one of a growing number of people with T1D who must now contemplate how best to manage their diabetes care in their sixth decade and beyond. When the Joslin Medalist Program and Study began in 1948, it only offered medals for those who survived 25 years after diagnosis. The program has expanded as diabetes care has improved, and Joslin awarded its first 80-year medal in 2013.
While there’s not been a robust amount of research on aging with T1D, you should know there is strong evidence that each generation of people with this condition is living, on average, longer than the last.
In 2011, researchers announced that a longitudinal study found those diagnosed with T1D between 1965 and 1980 had an average life expectancy of 15 years longer than those diagnosed between 1950 and 1964. In the 21st century, better diabetes treatment options have continued to add months to the average life expectancy for people with diabetes across the U.S., according to Dr. Nick Argento, an endocrinologist and diabetes researcher with Johns Hopkins Medicine.
“What you see in basically just a generation… is an explosion in the number of people who are 50-year medalist survivors,” says Argento, who also lives with T1D himself.
However, not everyone with T1D who is approaching retirement age has thought long and hard about how to manage the condition during their silver years. Some of that is human nature, but there is also something inherently in-the-moment about T1D that makes it hard for people to look past day-to-day health concerns, Argento adds.
“When you’re trying to sort through a lot of things and attend to… needs right now, it’s harder to step back and think about the future until you have to,” he says.
If, like many, you need some help to plan for life with T1D past retirement, here is an overview of some factors to consider.
As you age, it can be tough to determine what health issue might be a result of T1D versus what might be simply a result of the aging process. In either case, there is no reason to accept anything as “just growing old,” according to Alicia Downs, a diabetes care and education specialist (DCES) and director of Patient Care and Education Services at Pennsylvania-based Integrated Diabetes Services. It’s extremely important that people with diabetes remember this, as sometimes they will have to remind their healthcare providers of this fact, she says.
“Never assume that loss of cognition or stagnation is a natural part of aging; it’s not. Because your clinicians are going to assume that… you have to be vocal,” she explains.
According to a Diabetes Spectrum overview of research on aging and T1D, long-standing diabetes is often associated with “increased risks of severe hypoglycemia, micro- and macrovascular complications, cognitive decline, and physical disabilities.”
Also, people with T1D almost invariably will need to closely manage their cardiovascular health in adulthood and as they age, as heart disease becomes the
Another health risk to consider as one ages is the risk of falls, which is the leading cause of injury for people 75 and older. That risk magnifies when you factor in dizziness or loss of consciousness from hypoglycemia. Because of this, researchers often recommend that older people with T1D maintain a somewhat higher blood glucose target range than younger people with T1D.
The research is mixed about whether or not T1D heightens the risk of cognitive decline. However, decline is certainly something that can happen with aging, and it is best to be prepared for how to discuss it should such a decline impact blood sugar management, according to Downs.
“One thing that I coach patients of all ages on is to have what I call a backstop plan, sort of a minimum level of acceptable self-care,” says Downs, who lives with T1D herself. “‘Am I checking my blood sugar before I take my doses?’ ‘Am I dosing appropriately?’ ‘Am I dosing as scheduled?’ The next thing I recommend is that you let someone in your life who cares for you and you trust know what that line is.”
Few people readily wish to start a conversation with their healthcare providers about planning for aging with T1D. For Downs, those conversations often first center on what to do about Medicare.
Medicare is a government-sponsored national health insurance program that primarily provides coverage for people 65 years of age or older. The program, which is funded through regular paycheck deductions, subsidizes healthcare costs for older Americans (and some younger Americans in certain situations). This is good for people with diabetes or others who would otherwise have very high healthcare costs.
However, advocates argue that the program too often favors curbing costs over providing the best treatment options, and that can have a significant impact on people with diabetes, says Argento. Often, Medicare enrollees have to appeal decisions that deny coverage for everything from an adequate number of glucose test strips to the right formulation of insulin.
“You really have to fight for everything that should be the standard of care,” he says.
Downs says Medicare enrollment can often be a rude awakening for people with T1D, especially when it comes to diabetes technology. In recent years, diabetes advocates have successfully championed for Medicare coverage for newer models of continuous glucose monitors (CGMs), but not every piece of diabetes tech is covered under current Medicare policy.
“I had a lot of people a couple of years ago who jumped on the Medtronic 670G train at age 64,” she says. “And they went on Medicare, and were like, ‘Nobody told me that my CGM sensor wasn’t going to be covered anymore. Why can’t I use the system that I just spent a year learning?’”
There are different tiers of Medicare to sign up for, and what is covered under each tier can change dramatically each year. Downs recommends carefully reviewing Medicare plans each year, and enlist the help of local agencies on aging or your healthcare providers to help navigate any questions.
Picture someone who is stereotypically “old” — stuck in their ways and refusing to learn new technology or new methods for doing things. Downs says that doesn’t describe her elder clients at all.
“We have this perception of our parents’ generation as stuck in their ways, that they don’t want to change, they don’t want to move,” she says. “What I find is this amazing phenomenon that happens around the age of retirement of rebirth, passion for change, improvement, and growth.”
Downs encourages that growth mindset when it comes to diabetes self-care. She says it is never too late to learn new ways to approach blood sugar management or to fine-tune what you have been doing for years. For example, she had one client who was 78 years old when he successfully learned to use a semi-closed loop insulin pump after decades with multiple daily injections.
She says it’s important for healthcare providers to approach such conversations about change with respect.
“They lived longer not even being able to check their blood sugar than I have with the CGM. I have to respect that,” she says. “But when I give that respect, I also open the door and say, ‘Do you want to… add new technology, medication, or ways of doing things that can make it easier and better, and make you feel better?’”
People who arrive at the age of retirement may feel discouraged if they have complications, but Downs reminds them that if they made it this far, they must be doing something right. She works to highlight their accomplishments and the ongoing goal to stay as healthy as possible.
“I always remind them, ‘You’ve got a laundry list of complications, but the fact that you worked this hard this far is the reason that that list isn’t twice as long,’” she says.
Because there are more people with type 2 diabetes than with T1D, hospitals and longterm facilities are predisposed to offering a simplified version of blood sugar management that may not meet all the needs of people with T1D, according to Argento.
When it comes to hospital care, every person with T1D should have a plan in place for what to do in the event of an unexpected hospital stay. That plan should include a list of medications and healthcare providers to contact, as well as a bag with extra diabetes tech supplies. People with T1D should also designate a friend or family member to advocate on their behalf. Once hospitalized, it’s important to communicate with every health care provider who provides treatment that you or your loved one has T1D, not Type 2, advises Argento.
When it comes to longterm elder care facilities, it’s best to explore the possibilities of what’s available in your community before you need it, advises Downs. When you visit, ask questions specifically about policies involving blood sugar management and diabetes care.
In 2016, the American Diabetes Association put out a position statement about diabetes management in longterm care facilities which emphasized that successful blood sugar management is a team effort. The better facilities will have “a focus on accountability, communication, timely interchange of information, identification of medical home or coordinating clinician, coordination of care across the continuum, national standards, and standardized metrics for quality improvement. The LTC facility should have processes in place for planned and, even more importantly, unplanned transitions,” they wrote.
It may be extra vital for people with T1D from communities of color to carefully think out strategies for aging with T1D and repeatedly advocate for good quality care.
That’s because research has shown that people of color often face significantly more hurdles to receiving quality care in their later years than the white elderly population, according to a report by The Catholic Health Association of the United States.
Reasons given for disparities in care include the wealth gap between communities of color and white communities, and the fact that African-American and Hispanic patients are less likely to be assessed and treated for pain than white patients. In addition, there is evidence that in a longterm care facility, a higher “concentration of minority residents correlates both with lower quality of care and greater dependence on Medicaid, which under-reimburses for nursing home care.”
Navigating the issues that arise with aging and T1D is not always easy, and it’s important to seek out assistance and resources whenever possible, says Downs. Talk to your healthcare providers and seek out resources available in your local community.
“Nearly every municipality has a Department of Aging, so tap into those resources,” she says. “Again, find them before you need them.”
Both Downs and Scoyen agree that one of the most important components of aging well is to find both purpose and friends. Scoyen says she helps support others and finds community through attending Alcoholics Anonymous meetings. She also regularly takes walks with a fellow person with diabetes, and the two regularly discuss life with diabetes.
Downs says that it’s vital to find something you are passionate about and pursue it, and to connect with people however you can, either in person or on social media.
“The more time life is taking, the more we have to be purposeful and connect with others,” she says.