Do you know someone who is living with diabetes? Most likely you do: About 1 in 3 people will develop diabetes during their lifetime. Moreover, it is more than twice as common in people with serious mental illness when compared to the general population.
These are some pretty staggering numbers, but here’s another wake-up call: people with serious mental illness die 25 years younger than the general population. That puts the life expectancy of people with serious mental illness in the same ballpark as that of people in undeveloped countries like Sudan and Haiti. And one of the major causes of death is diabetes.
Clearly, this is a crisis! But crisis, as we all know, is an opportunity for change. The Institute for Community Living (ICL), working with the Urban Institute for Behavioral Health, is proud to be leading a New York State Health Foundation-funded project, the Diabetes Co-morbidity Initiative (DCI), to urgently improve diabetes care for consumers at 7 NYC agencies, including The Bridge, Comunilife, F.E.G.S., Jewish Board of Family and Children’s Services, William F. Ryan Community Health Center, Services for the Underserved and Comunilife.
This project addresses type 2 diabetes mellitus, which usually begins in adulthood and is preventable. Type 2 diabetes results from the body’s inability to keep blood glucose (sugar) under control. A glucose level that is too high damages blood vessels and nerves, leading to diabetes complications like: heart attacks, strokes, kidney failure, blindness and foot infections (worst case: amputation).
But keeping glucose in check can prevent complications and lead to a longer life! The trouble is: keeping glucose in check is not always easy. Although medication is available to maintain healthy glucose levels, behavioral changes involving diet and physical activity are also needed to manage this disease.
Why is diabetes more common in people who have mental illnesses?
Lifestyle factors like exercise and diet, in addition to diabetes-related genes passed down through families, put people at risk for developing Type 2 Diabetes. The risk of developing Type 2 Diabetes is higher for people with mental illness for a number of reasons. Low energy levels may make it difficult to be physically active. Changes in appetite and medication side effects can make it difficult to eat a healthy diet. Some of the medications used to treat mental illness have been shown to increase the risk for Type 2 Diabetes. Other factors including poverty have also been linked to increased risk. Furthermore, people with mental illness rarely receive the full range of interventions or coordination of care recommended to prevent and treat diabetes. It’s a complicated problem. The solution will need to involve change at multiple levels: individuals, organizations and the community at large.
The Diabetes Co-morbidity Initiative (DCI)
The DCI approaches the diabetes crisis on multiple levels. On the individual level, it seeks to enhance the motivation and knowledge of people with serious mental illness to self-manage their diabetes. On an organizational level, it seeks to develop the skills of staff working with consumers with diabetes and to improve collaboration among health and mental health providers. On a community level, it seeks to develop awareness of the crisis and support for people with diabetes, and to provide easy-to-use educational materials to as many people as possible.
The DCI involves using a Diabetes Self-Management Workbook to help consumers improve their diabetes self-care and access quality medical care. This Workbook seeks to introduce a new approach in making lifestyle changes to self-manage diabetes. Visually appealing and easy to read (grade 5 level), it consists of 9 modules designed to guide consumers in setting achievable goals in the areas of:
- Understanding diabetes
- Caring for diabetes and mental health
- Choosing healthy foods
- Being physically active
- Taking medication
- Taking care of feet
- Checking glucose
- Having a sick day plan
- Quitting smoking
Each module uses motivational techniques to help consumers think about their experiences and values and how improving health behaviors might be relevant to achieving life goals. An awareness of the consumer’s readiness or “stage of change” helps service providers to maintain a person-centered approach throughout the process. The modules also allow consumers to discuss barriers to changing health behaviors, and guide problem-solving around those barriers.
The Diabetes Self-Management Workbook is just one part of the DCI Toolkit. The tools help both the consumer and the consumer’s treatment team to work together in coordinating diabetes care. These tools include the Diabetes Info Card, available as a pocket-sized or letter-sized card. This card allows consumers to record and track the six things they need to know about their diabetes, made easy to remember as the ABCDEF’s: A1c, a measure of blood glucose control, Blood pressure, Cholesterol, kiDney function, Eye exams, and Foot exams.
The DCI Toolkit also includes form letters that consumers can bring to their primary care providers (PCP’s) and psychiatrists, that introduce the consumer as a DCI participant, request relevant health information, and invite collaboration between providers. Tools developed specifically for mental health providers include the DCI Quik Guide, a laminated card with reminders on principles of person-centered care provision, including tips on ways to collaborate with consumers’ providers, family, friends and other supports. These and other tools are available in English and Spanish.
The DCI Toolkit will be introduced at a total of roughly 30 mental health programs over the next two years, with an anticipated 30 participants at each program. A team of researchers will be studying whether or not using the DCI Toolkit results in better health for consumers with diabetes. Improvement in consumers’ A1c levels, a measure of diabetes control, will be one of the main indicators of whether the Toolkit is effective. Changes in food choices, physical activity, foot care and smoking are just some of the other outcomes that will be studied.
Early Experience with the Diabetes Self-Management Workbook
The Workbook was recently piloted across several programs at ICL, The Bridge, F.E.G.S. and William F. Ryan Community Health Center. About 200 consumers with mental illness and diabetes volunteered to participate in trying out the Workbook, some in a diabetes group and some during individual sessions, according to their preference. Staff used motivational enhancement techniques to develop interest in participation.
Le’Nise Watson-Hudson, Director of Nursing at ICL, recalls one individual at ICL’s Milestone Residence on the campus of Creedmoor Psychiatric Center in Queens, who was challenged with high A1c levels, blood pressure and cholesterol. Previously, this person avoided all groups and did not want to talk about his diabetes. Staff respected his decision while still extending invitations to the weekly diabetes group. One week, a group was held for participating consumers who were working on monitoring their blood glucose levels through finger sticks. Chinese food from the “diet” menu was ordered and served as a reward. Intrigued that a favorite food could be served in the context of a diabetes group, the individual attended. Gradually, this person not only became “a regular” at the weekly diabetes group, but noticeable changes in attitude and behavior became apparent. Moreover, the positive changes he made produced immediate results: his A1c level (i.e. his blood glucose) was slowly but consistently dropping to a normal range.
A Case Manager for F.E.G.S. in Nassau County says that a consumer shared with her for the first time that he had diabetes when the Workbook was introduced at their program. Case managers are the “glue” in the mental health services system and are responsible for referring and motivating consumers to access health care services. They also help consumers to develop self-management skills and knowledge. When this F.E.G.S. Case Manager learned of her client’s diagnosis, she immediately linked him to a nurse who contacted his primary care provider and coordinated care. He asked questions about diabetes, and they used the Workbook together to look for answers. He began to take small steps toward improving his eating and physical activity. He tried limiting sweets and “portion sizes,” and was surprised that he could feel full with less food. He also began doing push-ups. He started using his glucometer, which had never before been taken out of its box, to measure his blood glucose. He reports that his mood has improved since he began making these changes, and shares diabetes-related news with his Case Manager each time they meet.
Preliminary results of data analysis show positive trends in the proportion of consumers reporting that they talk to their primary care providers about diabetes, ask about their A1c level and regularly check blood glucose. A significant change was found in the proportion of people indicating that they take their medications as prescribed. There was also an increase in the number of people reporting that they had useful ways of managing stress in their lives.
The initial experience with the Diabetes Self-Management Workbook is encouraging, and ICL and the DCI partner agencies hope to make an even bigger impact with the enhanced DCI Toolkit. Consumers can beat the diabetes crisis, working with the people that support them towards self-management and full recovery—physical, mental and spiritual.
Rosemarie Sultana-Cordero, LMHC, Diabetes Co-morbidity Initiative Clinical Coordinator, at the Institute for Community Living. Jeanie Tse, MD, is a Psychiatrist and Director of Integrated Health at the Institute for Community Living. Andrew Cleek, PsyD, is Director of the Urban Institute for Behavioral Health.