By Queen Muse
For many years, a diagnosis of Alzheimer’s disease was often not given until signs of serious memory and cognitive problems were apparent. Today, patients can be diagnosed earlier in the disease process as with Mild Cognitive Impairment or mild stage Alzheimer’s disease dementia. In the future, routine diagnosis of Alzheimer’s disease will likely rely on gene and biomarker testing and occur before symptoms even begin.
Early diagnosis brings opportunities to prevent cognitive and functional losses and to plan for these losses, but a diagnosis of Alzheimer’s disease can also bring challenges.
“These findings suggest that a patient’s quality of life could be impacted by a diagnostic label and their expectations for the prognosis. So, when a clinician discloses the diagnosis and prognosis of Mild Cognitive Impairment or mild stage Alzheimer’s disease, a patient may experience additional symptoms, like anxiety or depression,” said Shana Stites, PsyD, MA, MS, a clinical psychologist in the Penn Memory Center, senior research investigator for the Penn Project on Precision Medicine for the Brain (P3MB) and the lead author of this study.
A diagnosis of Alzheimer’s disease can evoke assumptions, stereotypes, feelings, and attitudes that can effects person’s quality of life, how they view themselves and how they are treated by others. This study is part of the research team’s ongoing efforts to understand how early diagnosis can effect a person’s quality of life and wellbeing. The results add to what they’ve been learning about the stigma of Alzheimer’s disease (video).
In the study, the researchers evaluated 259 adults above the age of 65 with normal cognition, mild stage Alzheimer’s disease, or mild cognitive impairment, to look at diagnosis awareness and multiple domains of quality of life including, cognitive problems, activities of daily living, physical functioning, mental wellbeing, and perceptions of one’s daily life. Face-to-face interviews and self-report questionnaires allowed the researchers to compare measures of quality of life by cognitive performance, diagnosis awareness, and diagnostic group. The findings help to identify psychological processes underlying relationships between cognitive decline and quality of life. According to Stites, the study has pragmatic implications for current and future clinical practice.
“It’s not just an issue of to tell or not to tell, it’s an issue of how you tell and what you tell because when you give someone a diagnosis you’re also communicating, either directly or indirectly, a lot of information that can affect the activities people do in daily life, their planning for employment and lifestyle, emotional wellbeing, and social relationships with close friends and family members. These issues need to be explicitly addressed with patients,” Stites said. “Maybe at this point we can’t prevent cognitive decline, but we certainly have effective interventions for treating depression and for managing other symptoms.”
Researchers note that further study is needed to understand what drives the impact of awareness of diagnosis and prognosis on quality of life. Future studies might include pre-clinical research that is being done in Alzheimer’s disease, where clinicians are working to diagnose people who are at risk of developing the disease based on genetic biomarkers to determine how diagnosis awareness might affect an individual’s sense of identity and functioning if they learn that they have a high probability of developing Alzheimer’s disease in the future, Stites said.
Stites’ published research was featured in a recent article in The Philadelphia Inquirer and Philly.com
Penn coauthors are Jason Karlawish, MD, Kristin Harkins, MPH, Jonathan D. Rubright, PhD, and David Wolk, MD.
— Chloe Elmer contributed to this article.