From a father waking up at 3 am each night to check the glucose of his toddler with type 1 diabetes, to a brother bandaging the numb feet of his elderly sister with type 2 diabetes, caring for family members with diabetes goes far beyond doctors’ consultancy rooms and hospital wards. Families have a significant role to play but they need help to cope and provide care for their loved ones.
Half of people living with diabetes (51%) recently surveyed by the International Diabetes Federation (IDF) feel that their diagnosis has put a strain on their family. This sentiment could be explained by the emotional and financial pressures associated with diabetes. More must be done to support families with better education and uninterrupted access to affordable medication and care, so their loved ones can maintain a healthy and fulfilling life while living with diabetes.
Counting the cost of diabetes
The cost of medication and ongoing care remains an issue in many parts of the world, despite almost 100 years having passed since insulin – necessary for treating type 1 diabetes – was first used to treat the condition. It is therefore no surprise that nearly half of people living with diabetes (46%) surveyed by IDF want to avoid burdening their families.
In the USA, care for a person with diabetes now costs an average of US $16,752 per year.1 Some of the costliest diabetes medicines and devices are those that prevent complications. The affordability of glucose test strips and insulin can pose serious dilemmas for people who are insulin-dependent but cannot fund self-care. Insulin pumps, CGMs and diagnostic tests are too expensive for most to manage. Healthy food, critical for all people with diabetes, is especially important for mothers with diabetes in pregnancy. Chronic complications, especially end-stage renal disease (ESRD), amputations, and cardiovascular events, are the largest burden of cost and often, the result of poor access to essential medicine and care.
A diabetes diagnosis can create concerns over both personal and family finances, as money needs to be saved for treatment and people may have to sacrifice buying staples such as food or investing in a child’s education as a result. This leaves many feeling worried. Four out of 10 people living with diabetes (43%) told IDF that they felt anxious when they were diagnosed. This is compounded when they also feel the condition is affecting their family.
Julieta Laundani, a mother from Argentina, discovered her daughter Francesca had developed type 1 diabetes when she was 18-months-old and recognises that families who cannot afford treatment and care need better support.
She recently told IDF: “I feel fortunate. Francesca’s got the best insulin pump available in our country. I get the insulin and other supplies that she needs. But unfortunately, that isn’t everyone’s reality. We know our experience isn’t matched by many. We are privileged to have insurance coverage that provides access to the best possible care.”
Families want to help
While it is understandably difficult for people living with diabetes to come forward and share their concerns, those closest to them want to help. The DAWN2 Study discovered that nearly half (46%) of people interviewed said they wanted to help a loved one with diabetes deal with their feelings about the condition. A similar amount (39%) also said they would like to be more involved in the care for their relative.
Lucas Ezequiel Santiago cares for his mother, and while the diagnosis has put pressure on both himself and others, he also found it brought his Argentine family closer together.
He said: “At first I had a hard time dealing with it, but as time went by I was able to be there for her. At that time, I was going to school and had a lot on my mind – her condition, school, and my grades. Eventually I got to manage it and I was cool with it. I didn’t have a lot of knowledge about type 2 diabetes.”
“You can say it was a change we all went through, we are more together now, being there for my mom, reminding her to have her shots, to eat certain things and avoid others. I believe the whole family needs to be involved in taking care of the individual, not only themselves.”
It’s time to support families
Unfortunately, many families are not able to cope as well as Lucas because they are not given enough access to education to help them both identify and manage diabetes within the family.
Type 2 diabetes is a growing global epidemic and we are quickly reaching the stage where it will be uncontrollable. Type 1 diabetes, accounting for approximately 5% of diabetes, is on the rise and has a much greater economic burden per case than type 2 diabetes. Supporting families is key to tackling all types of diabetes.
If healthcare professionals are provided with the tools to detect and diagnose diabetes early, families can ensure the person with diabetes receives the treatment they need more urgently, to help prevent the potentially devastating complications associated with the condition.
IDF firmly believes that people with diabetes, and their families, should have regular and affordable access to the care, education and support that is required for them to live a full and healthy life with the condition. Diabetes now concerns every family. We need to make the changes today to protect the families of tomorrow.
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