The invisible burden of type 1 diabetes through the eyes of a caregiver

September 10, 2024 at 08:01 AM EDT

(BPT) - Sponsored by Sanofi

Caregiving for those with type 1 diabetes is more than a responsibility, it's a full-time job, requiring around-the-clock care and attention. From monitoring your loved one's blood sugar, to managing food intake, and so much more, being a type 1 diabetes caregiver requires being comfortable and confident in the face of a million uncomfortable decisions that must be made every day. These ongoing, significant - and the seemingly mundane - actions and decisions can take both a tangible and intangible toll on the health and well-being of caregivers, who often put their own needs on hold to support someone else.

Cassie Bailey, a mother to son Josiah, who was diagnosed with type 1 diabetes at age 5, knows firsthand the toll caregiving can take. 'When Josiah was first diagnosed, our family's whole world got flipped upside down,' Bailey explains. 'As a mom and a caregiver to a young person living with type 1 diabetes, there's no textbook that tells you how your day is going to go - and that can be both mentally and emotionally taxing.'

To better identify and ultimately understand the impacts of a type 1 diabetes diagnosis on caregivers like Bailey, Beyond Type 1 - a leading organization dedicated to changing what it means to live with diabetes - conducted 'The Cost of Not Knowing' survey, which was commissioned by Sanofi. The findings highlighted the emotional, social, and financial impacts of diagnosis on caregivers of children under 18 with type 1 diabetes, and also adults over 18 with the condition.

Let's take a look at key takeaways from 'The Cost of Not Knowing' as it relates to caregivers of type 1 diabetes children, told through Bailey's experience:

Navigating the emotional toll

For many, a type 1 diabetes diagnosis can come unexpectedly and can happen when someone is already seriously ill, leaving caregivers shocked and uncertain about the future. Unfortunately, that was the case for the Baileys. When Josiah was first diagnosed, he ended up in the hospital in diabetic ketoacidosis (DKA), a serious complication of type 1 diabetes that can be life-threatening. 'Josiah's diagnosis was heartbreaking; as a mom, you never want to see your child sick,' Bailey shares. 'We were completely blindsided and unprepared. In hindsight, I know now that he was experiencing symptoms but, at the time, it was easy to explain them away, until one day he collapsed. We rushed him to the hospital, where he was diagnosed that same day. I felt like I had no time to do research or educate myself. I remember feeling incredibly worried about how this would impact not only his childhood but also his long-term health.'

Survey findings show more than half (51%) of caregivers who have been caring for their loved one since diagnosis described their emotional health as poor when they learned of their loved one's type 1 diabetes diagnosis. Caregivers noted feeling sad (41%), afraid (40%), and uncertain for the future (30%), among other emotions. Knowing about the risk of type 1 diabetes in advance of a diagnosis may help alleviate these negative emotions - in fact, 97% of caregivers say knowing sooner about their loved one's risk of developing type 1 diabetes would have diminished these feelings.

Transforming daily routines

Common parental worries are forever transformed into serious concerns about a child's physical well-being in the wake of a type 1 diabetes diagnosis. Imagine the magnitude of this adjustment and how it leads to caregivers completely changing their daily lives - they literally have no choice.

Additional survey findings paint a picture of this - consider that a staggering 83% of caregivers reported having changed how they lived their life when they first learned of their loved one's type 1 diabetes diagnosis because they felt overwhelmed and unprepared. Moreover, nearly nine in 10 caregivers (87%) gave up some of their interests or future plans when they first learned of their loved one's diagnosis.

As Bailey explains: 'There are no 'breaks' when it comes to managing type 1 diabetes. Had my husband and I known about our son's diagnosis sooner, I believe we would have been better prepared for the realities of this condition, giving us more time to adjust our routines to our son's - and entire family's - new normal.'

Taking the next step to get screened

Despite the benefits of early detection, type 1 diabetes screening is not commonly performed prior to diagnosis. Like many families, the Baileys didn't know that early screening for type 1 diabetes was available. 'Everything in me wishes we were aware of screening and had taken the step to get it done. It would have given us time and space to get educated, and most importantly, potentially reduced the risk of Josiah going through DKA. Knowing what I know now, I am a big advocate of early screening,' Bailey notes.

Many caregivers echo this sentiment, with 96% of caregivers in the survey recommending friends and family members get an early autoantibody test for type 1 diabetes to understand their risk of developing the disease. As published literature indicates that up to nearly 90% of people diagnosed with type 1 diabetes have no family history of the condition, it's easy to understand why nearly all caregivers recommend screening. Don't wait to get screened; talk to your doctor about getting your family screened.

This research was conducted by Wakefield Research via two survey instruments - one among 1,000 US adults with type 1 diabetes and a second among 1,000 US caregivers to those under the age of 18 years with type 1 diabetes. Learn about 'The Cost of Not Knowing' and methodology at https://beyondtype1.org/unexpected-type-1-diabetes-diagnoses/ - and visit The1Pledge.com to get answers to your screening questions, discover more information about type 1 diabetes, find resources, access live chat, and more. You can also explore even more resources, including information on the signs of diabetes, on the Beyond Type 1 website.

Sanofi does not provide medical advice, diagnosis, or treatment - information is provided for educational purposes only. Your doctor is the best source of health information. Talk to your doctor if you have any questions about your health or treatment.

Cassie Bailey is a paid spokesperson for Sanofi.

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The invisible burden of type 1 diabetes through the eyes of a caregiver

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