Family involvement is critical to diabetes control. Changing the world starts with changing the family.
-Virginia Satir, a psychologist.
What does it mean for people with diabetes to have their families involved in their treatment?
For people with type 2 diabetes, the whole world has changed, and for their families, it means big changes.
Whether or not families cope well with the change of having the disease can mean the difference between the rapid progression of the disease and maintaining a relatively healthy life. This is an opportunity for families to strengthen their ties to each other and improve the overall health of their members.
Family members can be a supportive force for patients, or they can be a problem
Says Susan H. McDaniel, MD, professor and vice chair of psychiatry in the Department of Family Medicine at the University of Rochester School of Medicine in New York. Susan has written six books on family therapy, illness, and health.
Susan notes, “Families must be involved in the management of any chronic disease that must be managed. There are many needs to control diabetes, but the outcomes are all very uncertain, and ongoing glucose monitoring can bring a lot of stress.”
When a family member develops diabetes, the whole family is automatically involved, whether they want to be or not. But such involvement is not always a good thing.
Susan says, “Family members can be a resource and provide support for the patient, or they can cause a lot of trouble.”
There are several main reasons that make type 2 diabetes a family disease.
1. Family genetics
Genetics: There is no single gene that causes diabetes, but there is clearly a genetic component to diabetes.
Family members share a diabetes susceptibility gene, and a diagnosis of diabetes in one family member may mean that one or more other family members are also at risk for diabetes.
2. Family diet structure
Food: When families live together, they usually eat the same foods at the same table. Even when a child grows up and leaves home, he or she will eat the foods that the family has taught him or her to eat.
High-fat, high-calorie diets increase the risk of obesity, which in turn increases the risk of developing type 2 diabetes. It is best to always use a low-fat, moderate calorie diet.
If a family member has type 2 diabetes, their health depends on changing to a completely different diet. If the family doesn’t change, the change will be more difficult for the patient.
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3. Lifestyle of family members
Exercise: Of course, one family member may be exercising even though sometimes everyone else in the family is sitting on the couch watching TV. But when everyone else is entertaining on the couch, it’s hard for people with diabetes to exercise.
Susan said, “It’s hard for people with diabetes to be motivated to make changes when they see others eating what they’ve always eaten and being as sedentary as they used to be. Diabetes means changing one’s lifestyle. Interventions that target families are usually more effective than those that target individuals.”
How can family members be involved in treatment?
Alan M. Jacobson, PhD, head of behavioral and mental health research at Harvard University’s Georglin Diabetes Center in Boston, said family means different things to different people at different times in their lives.
Alan describes, “Every family is different. Not every family is made up of a 55-year-old couple with a couple of 22-year-olds living on the other side of the block. A meaningful family support system may include a spouse and adult children, and it pays for family members to be involved in diabetes management. When a patient consults a diabetes doctor, family members can sit down with a nurse or dietitian to develop a plan.”
The impact of having diabetes on other family members
The average age of someone diagnosed with diabetes in the United States is 46 years.
Older people with diabetes may rely more on their spouses, especially if children, parents, and siblings no longer live together or even in the same city. Younger people with diabetes also face an uphill battle to keep every member of the family together.
Lawrence Fisher, MD, professor of family and community medicine and director of the Diabetes Behavior Study at the University of California, San Francisco School of Medicine, noted, “Going back generations of beliefs helps clarify what care is, what the disease is, and how to cope. Experience also plays a role. There is an attitude of ‘My aunt had diabetes, and with all the modern technology, she still went through three amputations and died. What should I do then?’ These beliefs have had a huge impact on disease management.”
What does family culture mean for patients?
Family beliefs come from both the culture of the family and the experience of the family. It does not mean that every member of the family will feel the same way and agree to the same course of action.
There are differences between each family facing a health crisis. Addressing these differences requires acknowledging and expressing them.
Allan noted that sometimes this also means working to change cultural attitudes.
He said, “Today’s society already has more food that the body needs. We expect more and more because the culture tells us to want more.”
The impact of having diabetes on spouses
Whether the children and parents of people with diabetes live together or not, it is still the spouse or partner of the person who is most affected by diabetes. This seems obvious, but it is a fact that often goes unappreciated and unspoken.
Lawrence said, “For couples where one partner has diabetes, many people never sit down and talk about what it’s like to have the disease. Neither party knows what their spouse is thinking.”
Lawrence noted, “The data is very clear that spouses with diabetes are at high risk for depression and bad moods. Often the spouse can’t play much of a role in the disease. The spouse is often very worried, and the patient takes a piece of cake and the spouse frowns.”
Lawrence said, “This is a normal couple struggling with an abnormal situation. It doesn’t mean they’re crazy or sick. It’s a three-pronged situation consisting of husband, wife, and diabetes, and diabetes is usually the obvious but not mentioned by everyone.”
Seeking help from a doctor
In every family, different family members tend to take on different family roles.
Susan says, “One member wants the family to move on, and the other just wants to make sure the illness is taken care of. A family needs both types of roles. Some family members are very afraid and don’t want to be anywhere near the illness. Some family members are too involved in the patient’s illness until the patient gets angry and says, ‘Don’t tell me what to do.'”
Family therapists can help with this.
Susan said, “I think with adjustment, people move from extreme positions over time. Aggressive people may say, ‘Well, maybe I went a little overboard,’ and those who are avoidant may say, ‘Well, maybe I do need to pay more attention. Meeting with medical professionals can help every family.”
Everyone in the family needs to understand that they matter
Susan said, “Sometimes it’s just a normal emotional reaction to the disease and giving people space to talk to each other and steer things in a constructive direction, rather than eliminating all the anxiety as you would eliminate anger. Emotional reactions to illnesses like diabetes are completely normal. Everyone experiences this condition and feels scared and angry. But they should know that it will get better and eventually they will find a place for their feelings and their disease.”
There are two basic things that family members must do, and everyone in the family needs to understand that they are important and that what they are doing is supporting. Everyone in the family needs to be clear that the illness needs to be dealt with by everyone.
Families work best when they work together
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Lawrence noted that families work best when they work together. He lists 4 basic rules.
- Respect differences of opinion and resolve them in a collaborative way.
- Recognize the differences in beliefs between spouses.
- Be a compassionate patient spouse.
- Respect the patient.
Allan said the family must know what it is dealing with and needs to know it is not the only one with type 2 diabetes.
He noted, “What we’re dealing with and fighting against is a combination of biology and culture.”
Families will soon find it difficult to change, and that can create anger.
Allan said, “It’s important for families to be aware of what they are fighting against, and change requires a strong team and gathering together to fight it. There are no easy, quick solutions. Maybe the future of making sure you don’t weigh more than 10% of your optimal weight only requires a pill, but for now it still requires controlled eating and exercise.”
Finding joy in problem solving
Allan said, “The joy that comes from success is important and must be used to replace the joy that used to come from food. So for people who are happy to find a 5-pound weight loss, or to exercise a few minutes more than they used to, they are on the path to success. Patients can find the joy of incremental change.”
It’s also important not to get bogged down by the inevitable setbacks. People will do better at some times and worse at others. Families need to be prepared for the long haul.
The good news is that small improvements make a big difference.
Allan said, “For people with diabetes, modest improvements in exercise and fitness can be helpful.”
Addressing the difficulties from the beginning
Diabetes is not a total disaster.
Susan says, “Illness can be an opportunity to repair relationships between family members, and that’s an opportunity to address long-term difficulties. It’s clear that family members are really sick.”
She recommends getting on track as soon as possible after a diagnosis of diabetes.
“My point is, don’t let the illness turn into a disaster until you seek help from medical professionals.” She said with a laugh, “It’s difficult to get rid of a lot of arguments, but it’s easier to deal with a train when it’s just starting to go off the track than after it’s already been in an accident.”