Observing, Accepting, and Appreciating ADRD Caregiving

MCL Backstory

By Beth Thew and Brandi Ginn

Brandi Ginn grew up in a small town on the East Coast that is two and a half hours from the nearest metropolitan city. Growing up, she watched her large extended family cope with aging, and for some, Alzheimer’s disease. She observed and accepted all she saw as part of life.

As she moved through her undergraduate years, Ginn felt drawn to “work with vulnerable populations and do some good in the world.” An introductory cultural anthropology class taken on a whim surprised her with engaging content. Yet building a career in cultural anthropology felt difficult. Years later Ginn searched for a job in academia or industry that was equity-focused and found her current position as a program manager with the Medical Cultures Lab (MCL). For Ginn, it feels like a serendipitous fit between her formative experience with people living with dementia (PLWD) and their caregivers.

Since May 2023, Ginn has observed the experience of older adults with cognitive decline in San Francisco as a qualitative researcher. As part of the NIH-funded project “Diverse Cultures, Ethnography, and Decision-making in Dementia – Implications for Medical Culture” (DISCERN-MC), Ginn uses comparative ethnography to observe the experience of older adults living with Alzheimer’s disease and related dementias (ADRD) among diverse populations. Ginn and other MCL clinical research coordinators conduct the community-based participant observation at multiple field sites. DISCERN-MC, which began in 2020, currently has fieldwork sites in several counties in California, Maine and Massachusetts. MCL DISCERN-MC researchers are working to uncover similarities and differences in how the community and institutional culture shape decision-making amongst diverse populations impacted by ADRD. For Brandi, her MCL fieldwork role has provided an opportunity to reflect on her family’s experience and appreciate how her family navigated aging and ADRD without the same types of support she has witnessed during her fieldwork at MCL.

With a background in psychological and neurocognitive research, Ginn knew the stories gathered in qualitative research help to provide a fuller picture of health.  She also found herself wondering how analyzable the qualitative data would be. She found that similar stories were shared by caregivers at her fieldwork sites, although the sites themselves have different participant demographics. Ginn became familiar with the team’s use of Atlas.ti, the computer-assisted qualitative data analysis software used to identify thematic nuances in observations of field sites. The software can also extract important findings from interviews with PWLD and their caregivers.

At one of her field sites – a senior center art class – participants explained that the park they use for walking was now only open for a short window when the temperature was too chilly to walk. At another site participants reported that the pool they use for water aerobics had newly diminished hours and was closed for months of repairs. Ginn explains that both sites’ participants were experiencing the same type of quality-of-life decline regarding access to exercise spaces, yet she appreciates that psychological or neurocognitive research could easily overlook these commonalities of experience and their significance in peoples’ lives.

“The whole of the human experience cannot be captured through quantitative assessments and analysis,” said Ginn. “I am now learning that this is especially true for research pertaining to culture that involve vulnerable, aging populations with ADRD.”

Her visits to senior centers around San Francisco have already surfaced other similarities in experiences among older adults and caregivers of PLWD. She found shared positive perspectives on aging and ADRD. Ginn was surprised by the balance many older adults are able to strike: managing consequences of aging, while actively trying to live a fulfilling life. At two particular centers, Ginn witnessed seniors discussing day-to-day challenges during classes. Squeezing in discussion on the logistics of getting to doctor’s appointments when you don’t drive during art class or sharing how to plan outside-the-house activities with limited respite care nurses available at dance class.

Ginn describes hearing older adults speak thoughtfully about end-of-life planning for loved ones or themselves, while attending classes meant to enrich and enhance their lives as “a striking contrast that older adults are often silently navigating.”

The fieldwork has also helped Ginn place her own experience with a family member with Alzheimer’s into context. She has found some of the challenges and experiences of the site participants are like her own lived experience.

“It’s gut-wrenching to explain to your family member – ‘I know you feel disoriented, but you are here in your house, and I am going to explain your health issue again’ – for perhaps the fourth time that week,” said Ginn. Being able to observe during fieldwork that other caregivers are having experiences that she witnessed in her own family has given Ginn a new appreciation for the nuances and scope of caregiving for an Alzheimer’s patient. It has also given her a better understanding of the impact of not having as many supports in a rural area that her family caregivers had to contend with. Ginn also appreciates that she is being exposed to other stories that are dissimilar to her own background and appreciates that facet of qualitative research as well.

Joining MCL has sparked a desire in Ginn to further her career in public health and aging, possibly in increasing access to caregiver support services in rural areas.