A dementia diagnosis is devastating. While some patients given a dementia diagnosis can enroll in clinical trials that might provide a drug to slow down the progression of the disease, most are told those five words that would fill anyone in a doctor’s office with a sense of hopelessness: “There’s nothing we can do.”
But a new study published in Alzheimer Disease & Associated Disorders suggests there are ways to minimize the effect dementia has on a patient’s day-to-day life. To shake the despair of a dementia diagnosis, doctors recommend focusing on a few different domains they identified after observing over 1,500 people with dementia.
“It’s so important to find ways for the 50 million people worldwide who have dementia to live as well as possible,” said lead study author Linda Clare, a University of Exeter professor. “Our research sheds new light on what factors play a key role in maximizing factors such as wellbeing and quality of life. This must now translate into better ways to support people with dementia.”
For the study, which researchers named Improving the experience of Dementia and Enhancing Active Life—or IDEAL, for short—1,547 people with mild to moderate dementia and 1,283 caregivers rated their quality of life, satisfaction with life and wellbeing. Researchers compiled these ratings into what they called a “living score”—a reflection of their total health and quality of life.
For dementia patients, social interactions and their claim to independence were the most important factors for a life well-lived. For caregivers, it was whether they felt isolated or trapped by their caring situation that had a heavy hand in determining how well they ranked their overall quality of life.
Attitude was closely linked to wellbeing in both populations. Optimism, self-esteem, loneliness and depression all tied into an optimal quality of life. Physical fitness also played an important role for both groups.
And while everyone knows things like a positive attitude and exercise are ideal, this research focused on the profound effect they have on a person’s wellbeing, especially after a dementia diagnosis.
“Our research gives more specific guidance on where we should focus efforts to help people live as well as possible with dementia,” said co-author Dr Anthony Martyr, of the University of Exeter. “For example, looking at how we can help people with dementia to avoid depression or stay physically and socially active. For carers it could involve strengthening community ties and building strong networks. We now need to develop and research programs to establish what really works in these areas.”
Now that scientists have identified the factors that make life better for dementia patients and their loved ones, they plan to figure out how to implement them in a treatment plan.
“People with dementia have the right to live well—however, without clear definition it can be hard to determine what ‘living well’ really means,” said James Pickett, Head of Research at Alzheimer’s Society. Pickett points out that psychological health was the biggest influencer on living well after a dementia diagnosis.
“Too many people face dementia alone without adequate support, and interventions that improve self-esteem, challenge negative perceptions towards aging and reduce depression or loneliness could all help improve the psychological health of people affected,” said Pickett.