We recognize Jaime Lucove, Vice President Real-World Evidence and Research at T1D Exchange, for her editorial contributions to the development of this article.  

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Imagine living with type 1 diabetes (T1D) for decades, managing its many challenges, and reaching a point where you need additional support. Yet, you’re met with resistance from the very facilities designed to care for aging adults, which often lack the expertise and resources to handle the complexities of T1D.

For many, this reality underscores a broader issue: how to age safely with type 1 diabetes. Given that   7 in 10 Americans will require long-term care after the age of 65, we’ll explore concerns and challenges surrounding nursing homes and long-term care facilities, and the gaps in T1D care that are becoming apparent as people age.

“Facilities are refusing to accept people who live with T1D — and they can,” said Joanne Milo, founder of T1D to 100. “Others have been told caregivers are uncomfortable with diabetes technology, families will have to provide diabetes care, or they’ll have to switch to multiple daily injections. Some facilities aren’t equipped to treat low glucose, and they call 911 for basic hypoglycemia support. The stories are hard to fathom.” 

 

Improved outcomes, new challenges 

Thanks to significant advancements in T1D management, many people are experiencing improved health outcomes and living longer, healthier lives. A recent study, examining three decades of data, confirms this, showing a narrowing in the life expectancy gap between those with T1D and those without.

However, as people age, new challenges can emerge when their needs exceed the capacity of their support systems. A situation that often prompts consideration of relocating from home to a long-term care facility or nursing home. Finding a facility equipped to handle the 24/7 demands of T1D can be a significant challenge.  

What’s more, a large body of research suggests that people living with T1D are at higher risk of developing dementia — which is likely due to a combination of disease-related influences, genetics, and environmental factors. For some, this dual diagnosis adds an extra layer of complexity to managing T1D.   

Stanford researchers estimate that people with T1D make over 180 health-related decisions a day. Without preserved cognitive abilities, or access to trained caregivers, safe and effective diabetes management becomes nearly impossible. 

 

A struggle for proper T1D care  

If hospitals don’t have medical personnel trained in T1D care, where there should be at least basic knowledge, other care facilities have even less. Being a senior T1D leaves no place for us to live out our lives in long-term care. We fight as warriors our entire lives, only to be ‘left to the wolves’ in our later years. All of our hard work is for nothing. We have no choices because they don’t exist in America.
— T1D to 100 community member  

Regardless of the circumstances, many people will require varying levels of support as they age. The pressing question is: What happens when facilities designed to provide care cannot or will not offer it to older adults living with T1D?

We explored these issues with Joanne Milo, a 71-year-old resident of Southern California and founder of  T1D to 100, The Savvy Diabetic, and Loop and Learn, who has been living with T1D for over 60 years.

Diagnosed in 1965 at age 11, Joanne has navigated complications like retinopathy and also contends with other autoimmune conditions, alongside regular age-related changes that she explained make the daily tasks of management more challenging.

“Over the years, I’ve become really concerned about aging — healthcare can be dangerous — and who’s there for us?” she asked. “So, in 2017, I pulled together a group of people, and we sat around my kitchen table to voice our concerns about problems and possible solutions.”

What started as a passion project has evolved into T1D to 100, a comprehensive resource hub and community support network for those aging with T1D.

Given the complexities of healthcare, Joanne emphasized the importance of being prepared and sharing knowledge to make the most of available resources. By doing so, our experiences can be validated through interactions within the research community, ultimately helping to teach providers who have “no idea what to do with those of us who are aging with T1D.”

Joanne pointed out, “We take a lot of time, have more problems, and aren’t as cute as 10-year-olds.” 

 

Navigating the complexities of T1D in aging 

Aging with T1D presents a distinct set of challenges, ranging from the complexities of home management to concerns about the cost and availability of quality outside care.

Expected age-related changes can further complicate T1D management, affecting vision and hearing, mental sharpness, memory, dexterity, and the ability to recognize changes in glucose levels. All of which are essential for effective insulin dosing, device management, and glucose monitoring.

Any sensory changes can impact essential daily diabetes management activities, from opening packaging to changing pump sets and CGM sensors, to testing glucose levels with a glucometer and accurately delivering insulin with injections, pens, or an insulin pump.

Joanne highlights the difficulties individuals face when looking for long-term care: many facilities either will not accept an individual with T1D or they don’t provide wrap-around care. If they do, they charge exorbitant extra fees. What’s more, most do not have the necessary staffing or mandate to provide additional care including something as fundamental to T1D management as the insertion and monitoring of CGMs. 

 

Raising awareness on a collective T1D experience 

To better understand others’ concerns, Joanne asked her community of aging adults living with type 1 diabetes, “What’s your biggest fear or concern about aging with type 1 diabetes?” Here’s what some respondents had to say:  

 

My biggest fear is losing my memory. I don’t think about it much — what good would that do for me? But I do worry that I’ll forget how to manage my diabetes. Forget all of the things that I do.

Losing my ability to self-manage my diabetes, then having someone who thinks they know about type 1 mess things up or even cause my premature end. After 60 years of self-care, that would be dreadful. 

Being mentally and physically able to manage my diabetes by myself as I get older.

It’s become clear to me that most nursing homes have no idea what to do with us, so that petrifies me.

Our healthcare system isn’t designed to take care of the elderly. I fear trying to care for my diabetes alongside other, worse things that often come with aging — dementia, immobility, and blindness in particular. I fear having no help since I don’t have children, and I know what it was like for my mother. With diabetes and no children to help, I fear being mistreated and abused.

 

Several common themes emerged from the answers she received, including: 

  • Concerns about quality of life and being a burden to others 
  • Loss of independence and autonomy 
  • Cognitive decline and dementia 
  • Reliance on others who may not understand T1D 
  • Poor care in nursing homes 
  • Fear of T1D complications (blindness, kidney failure, stroke) 

 

Community voices: A call to action 

As the T1D community continues to age, the need for equipped care facilities and informed, skilled caregivers grows. While advancements in T1D management have improved health outcomes, the lack of resources and understanding of type 1 diabetes in care facilities poses significant challenges and safety issues.

T1D Exchange serves as an advisor to T1D to 100, supporting their efforts to build research initiatives and strengthen connections with the medical community. Ultimately, the goal is to ensure that those aging with T1D have access to both the quality and equal care they deserve.

“Aging isn’t easy. There is so much loss, and it requires a lot of resilience. It terrifies me to lose my independence and be subject to the care of someone else,” said Joanne. While there’s no guidebook on aging with T1D, she hopes that through community, heightened attention, and interactions with the research community, we can shine a bright light on people’s experiences — and improve upon them for others.