The early diagnosis of Alzheimer’s disease or other cognitive impairment can be more than a medical finding. It can become a new and serious challenge to a person’s social identity.
That was one of the findings from the latest research by Dr. Renee Beard, an associate professor in the Department of Sociology & Anthropology at the College of the Holy Cross. Beard kicked off the Fall 2017 Gerontology Speaker Series at UMass Boston’s McCormack Graduate School with a talk entitled “Forget Me Not: What Gets Lost in Translation in the Alzheimer’s Industrial Complex.”
Focusing on older adults who had recently been diagnosed with early stage Alzheimer’s disease (AD) or mild cognitive impairment (MCI), Dr. Beard reported on their subsequent experiences, which have also been published in her book “Living with Alzheimer’s: Managing Memory Loss, Identity, and Illness” (2016, New York University Press).
Dr. Beard offered a brief history of how Alzheimer’s became one of the leading causes of death for adults over the age of 65, and how the spectrum of “memory loss” has become a widespread focus in healthcare. In what she, and others, have labeled the “Alzheimer’s Industrial Complex,” the medicalization of memory loss and dementia created many unexpected problems. The majority of funding and research is currently focused on finding a cure and/or a cause, which has encouraged the social culture around memory loss to be strictly biomedical.
Because of this, encouragement of early detection and diagnosis has become a priority. But there is often an under recognized aspect of a diagnosis of early stage AD or MCI – the social stigma from friends, family and loved ones, and even strangers or well-intended professionals meant to help them.
Dr. Beard described how participants in her study felt after initial diagnosis and what having that label meant for them. She said they cited “relief” with the diagnosis, validation of something they felt was wrong, and that it wasn’t “all in their head.” But many also felt that becoming a patient labeled with AD led to “social death.” Most of her respondents reported feeling that they had experienced what Dr. Beard calls a “social demotion” since being diagnosed.
Dr. Beard highlighted how people in focus groups and memory clinics she spoke with fought hard to make sure they did not lose their previous identity with the diagnosis. In a culture that “sees memory loss as something to abhor,” she spoke of her participants rejecting those terms and seeing themselves still as a whole person. As one of her participants said, “I’m still the person I was before, I’m just me with Alzheimer’s.”
In her next phase of work, Dr. Beard will follow community-dwelling seniors who are facing Alzheimer’s, including those diagnosed and their significant social others, to better understand how their experiences change over time. She will be kick off her work as a Frederick Burkhardt Residential Fellow for the American Council of Learned Societies over the 2017-2018 academic year while in residence at the Gerontology Institute.