Penn study looks at the emotional impact of a dementia diagnosis

The diagnosis of dementia is increasingly presenting doctors and patients with a psychological problem.

At research centers like the University of Pennsylvania, new diagnostic science means patients can now learn that they have Alzheimer’s disease when the symptoms are mild or that they’re at high risk when they have no symptoms at all.  This will likely be useful someday, when treatments can attack the deadly, memory-robbing disease before it has destroyed so much brain tissue that patients can never recover.  Right now, though, there are no such treatments.  There’s just better access to bad news.

It’s not all that surprising, then, that new research from Penn has found that patients who understood they had mild cognitive impairment or mild Alzheimer’s disease, often a precursor to dementia, were less satisfied with their quality of life than people who were unaware of their diagnoses.

Those who thought they were going to get worse had higher levels of depression and stress. People who were not aware of their diagnoses were similar to normal peers in their assessment of the quality of their daily life or mental health.

The news is important, said lead researcher Shana Stites, because it means health workers may need to do a better job of integrating psychological support with care for people in the early phases of dementia, when they may still realize they have a problem.  Though we don’t have good treatments for dementia, we “do have strong evidence-based interventions for problems like depression and anxiety,” she said.

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Shana Stites is a clinical psychologist at the Penn Memory Center.

Stites is a clinical psychologist at the Penn Memory Center and senior research investigator for the Penn Project on Precision Medicine for the Brain. Her team’s study was published this month in the Journal of Gerontology: Psychological Sciences.

Stites said she believed most patients at Penn, where the people in the study were recruited from, were told their diagnoses, so she was not sure why more than one-third of them were unaware they had mild cognitive impairment or mild Alzheimer’s.  An obvious possibility is that they forgot.

In the past, she said, most people were not diagnosed with Alzheimer’s disease until they were far more impaired.  By then, many were not aware they were having cognitive problems.  Now, people are more likely to know that changes in the brain start many years before dementia is obvious. New diagnostic techniques are improving doctors’ ability to identify changes in cognition earlier and to differentiate among types of dementia.

Previous work has shown that people who were told they were at high risk for Alzheimer’s were distressed initially, but they adjusted.  Stites said patients with a diagnosis might find it harder to recover emotionally because they were experiencing cognitive changes that affected their daily functioning.

So, would it be better not to tell patients their diagnosis? There would be problems with that approach as well, Stites said.  Patients and their families go to doctors because they want an explanation of their problems.  Some feel better when they at least know what’s wrong.

Stites said further research was needed to learn what would best help dementia patients psychologically.  In the meantime, she said, it makes sense to acknowledge that this news may be emotionally difficult and to encourage them to talk about how they’re feeling.