A study led by researchers at the University of Exeter has found that people with early-stage dementia benefit when they are empowered to manage their condition by attending weekly support group sessions.
The study compared a group of people with early-stage dementia who attended the weekly 90-minute sessions with a group who did not. The impact of the sessions was assessed through interviews with the patients and their caregivers – three months after the sessions, and then again after six months. The results showed that the group sessions encouraged socialization, discussion, problem solving, and goal setting – all of which fostered independence and enabled the participants to become better able to help themselves.
Steven DeKosky, M.D., the interim executive director for the University of Florida’s McKnight Brain Institute, said he is not at all surprised by these results: “Over the last decade, research has shown the value of these types of support groups, which encourage those with dementia to explore what they can still do on their own, but in a safe environment.”
The sessions, conducted over an eight-week period, were led by professionals trained in the areas of dementia and self-care, and focused on “self-management” by providing the participants with a better understanding of their dementia and ways to cope with it. The groups were given tips and resources to help them better to manage their own symptoms, treatment, and lifestyle changes, and were encouraged, through group discussion, to come up with their own ideas for maintaining their daily routines.
Self-management – building the capacity of individuals and their families to manage disease effectively –is widely accepted as a strategy in the treatment of chronic diseases such as arthritis, diabetes and heart disease. Like those conditions, dementia is progressive and treatment focuses on alleviation of symptoms rather than a cure, and self-management has become increasingly embraced as a strategy to help people with dementia retain control over their lives.
Dementia is caused by damage to nerve cells in the brain, and affects people differently, depending on the area of the brain affected. The Exeter study involved people with progressive dementia, which is not reversible and worsens over time. Common causes of progressive dementia include:
Alzheimer’s disease is the most common cause of dementia in people age 65 and older. Although in most cases the exact cause is not known, plaques (clumps of a protein called beta-amyloid) and tangles (fibrous tangles made up of tau protein) are often found in the brains of people with Alzheimer’s. Certain genetic factors also may make it more likely that people will develop Alzheimer’s.
Vascular dementia is the second most common type of dementia, and occurs as a result of brain damage due to reduced or blocked blood flow in blood vessels leading to the brain. Blood vessel problems can be caused by stroke, infection of a heart valve (endocarditis), or other vascular conditions.
Lewy body dementia affects approximately 10 percent of people with dementia; it becomes more common with age. Lewy bodies are abnormal clumps of protein in the brain. Unlike in Alzheimer’s disease, symptoms include fluctuations between confusion and clear thinking, visual hallucinations, and tremor and rigidity.
The lead researcher of the Exeter study, Dr. Catherine Quinn, says “developing dementia can be a scary and isolating experience. We found early evidence that empowering people to manage their own symptoms and bringing them together helped them feel more confident about managing everyday life with dementia. The group members became friends and supported each other, and we found that they benefited from being able to learn from each other.”
The University of Florida’s Dr. DeKosky says the element of friendship provided by support groups is key, as friends and acquaintances tend to “slip away” from those with dementia. “In support groups, they are with people who are in the same boat, who understand that they can still function and can still speak for themselves,” he says. “They are seen as people; not defined by their disease.”
Even if the person suffering from early-stage dementia is part of a support group, experts agree that it’s important for family members and other caregivers to be highly involved; one important reason is that it allows them to better recognize changes as the disease progresses. People with dementia will, over time, become less self-sufficient, and may lack the insight to recognize their limitations.
Dr. DeKosky emphasizes that support groups are not just beneficial for those with dementia; being part of such a group is also very important for caregivers, as helping someone with dementia can be a lonely, isolating and emotionally difficult experience.
The McKnight Brain Institute of the University of Florida is one of the nation’s most comprehensive and technologically advanced centers devoted to discovering how the normal brain operates, and how to repair the brain following injury, disease or aging. It is located at 1149 Newell Drive in Gainesville, about three hours northwest of Vero Beach. Their phone number is 352-273-8500.
