Living with a chronic illness such as type 1 diabetes (T1D) is no easy feat. You have to be in a constant sate of alertness, and that’s often stressful and exhausting. There are several sources of stress: blood sugar management, financial cost, stigma, judgment from others, etc.
This side of T1D and the need to safeguard the patients’ mental health to avoid burnout, anxiety and depression are increasingly acknowledged.
There is, however, little information on how T1D impacts the mental health of family members (e.g., spouse, parents) of people with T1D, even though they are often involved in their daily lives and care.
What loved ones do
On top of the moral and financial support they might provide, the loved ones of patients with T1D often have to get deeply involved in the daily management of diabetes, whether by choice or necessity (e.g., in the case of a young child or severe hypoglycemia).
In a study that involved a little more than 4,000 family members, 65% of participants said they were involved daily in managing their loved one’s diabetes, mainly by researching information on diabetes (78%) and actively monitoring and managing blood sugar levels (66%).
Family members who act as caregivers for a person with T1D may feel worried about them. For instance, they may feel concerned about the risk of hypoglycemia or about potential medium or long-term complications or be concerned that their loved one could die prematurely or not be able to pursue their desired occupation.
The study also reported that 56% of respondents said that diabetes and its management were an occasional source of conflict with the person who has T1D.
Higher prevalence of anxiety and depression among spouses
Another recent study revealed that spouses of people with T1D run a higher risk of developing anxiety or depression than spouses of people without T1D.
The risk is higher in men than in women and increases over time as the illness evolves as well as when there are complications (e.g., diabetes-related restrictions in daily activities or other chronic illnesses).
This research was focused on spouses only and didn’t measure the impact on other family members, such as parents of children with T1D or children of a person with T1D.
According to the preliminary data of the BETTER registry, 11% of parents (one or both parents) of children with T1D were diagnosed with depression in the past year.
Better support for family members
These results are significant. They highlight an often overlooked reality and the need to provide better support to people with T1D and their families.
Yet, family support has long been considered a key element for helping people with T1D to manage their illness. The new data shows that it would be beneficial to better inform, support and listen to family members, and help them cope with the many challenges of T1D while minimizing their risk of developing anxiety or depression.
We will need more research to determine whether screening and treatment for depression and anxiety among family members are effective, and to implement strategies so that family members who support their loved ones with T1D don’t do so at the expense of their own mental health.
The BETTER registry (a kind of census of people with type 1 diabetes in Quebec) will help us gather more data on certain psychological aspects of type 1 diabetes (e.g., stigmatization). If you haven’t signed up yet, we invite you to learn more and join us. Find out more »
- Guillot, C., Raymond, G., Delisle, J., & Servy, H. (2019). Impact du diabète sur le vécu quotidien des proches de personnes diabétiques. Revue D’Épidémiologie Et De Santé Publique, 67.
- Nielsen, Jannie et al.. “Spouse’s Diabetes Status and Incidence of Depression and Anxiety: An 18-year Prospective Study”. 16 Apr. 2021. Web. 29 June 2021