National Alzheimer's Buddies hosted its second annual virtual symposium this past November which focused on highlighting sex differences in dementia. The event featured two panels in an effort to highlight different dimensions of Alzheimer’s disease—an expert panel discussion followed by a round table discussion with family, advocates and caregivers.
The symposium also featured two keynote speakers, Dr. Michelle Mielke from the Mayo Clinic and Dan Gasby, who was a co-founder of the B. Smith brand along with his late wife. Dr. Mielke introduced the audience to the topic of sex differences in dementia with a thorough presentation highlighting epidemiological data, discrepancies in risk factors, social influences, among others. Dr. Mielke brought attention to the fact that too few studies, at this point in time, examine sex and gender differences, especially among diverse populations.
“There is a really serious need to examine risk factors and sex differences in more diverse cohorts,” Dr. Mielke said in her speech.
Dr. Mielke also highlighted the importance of social interaction for reducing the likelihood of advanced progression of dementia.
“Social engagement is really, really critical which is why what you are doing is so important.” Dr. Mielke said. “If you can get people to socialize and exercise and just stay as active mentally and physically, that's also very helpful.”
Following Dr. Mielke’s opening presentation was the expert panel which dealt with topics like caring for Alzheimer’s patients and areas in the industry that need improvement. The panel featured Dr. David Goldberg, a hospitalist and avid Alzheimer’s advocate, Dr. Joy Balls-Berry, an associate professor at Washington University in St. Louis who is involved in health disparities research, and Dr. Macie Smith, a licensed social worker and gerontologist.
The panelists combined their personal experiences with caregiving and their expertise in the field of health care to contribute to a meaningful and enriching discussion. Dr. Balls-Berry discussed her experience serving as a caretaker for her mother and as a researcher in science.
“The other thing that I found as a caregiver that has been really important to me, and I have also noticed this in my research, is making sure that I am taking care of myself,” Dr. Balls-Berry said. “Making sure that we take care of ourselves is just as important as well.”
Dr. Goldberg discussed interactions he has had with patients and how that has shaped his understanding of disparities in Alzhiemer’s care.
“I think access to knowledge of available resources is something that is striking. Everytime I take care of someone who has Alzheimer’s, I talk with their family and ask ‘are you familiar with the Alzheimer's Association?’ and the answer, most of the time, is no, which is kind of crazy to me,” Dr. Goldberg said.
Dr. Goldberg mentioned that although he can equip patients and their families with the knowledge of these resources, actually being able to use the resources and get help is complicated by the structure of our healthcare system.
Dr. Macie Smith, with her 20 plus years of experience, gave insight on how she has seen the healthcare system operate against Alzheimer’s patients.
“What I have noticed is that we operate in silos. You have the medical practitioners practicing under the medical model. You have the community advocates and social workers operating under the social model, and the information is not being shared. We do not have a comprehensive care practice,” Smith said in the panel.
Smith said that the person-centered approach to dementia care should be threaded throughout all models of care. The patient should be at the center of the discussion and treated as a person, rather than merely a care-receiver.
Other topics discussed in the panel included the lack of geriatric care physicians for the growing elderly population, financial accessibility issues in regards to care, and advice for caregivers to slow progression of the disease.
The second part of the symposium was a roundtable discussion with family, caregivers, and advocates of Alzhiemer’s disease. The discussion featured Kris from @LifewithGrams, a caregiver and online influencer, Roxanne from @Wilson&Grandpa, an Alzheimer’s disease advocate, and Cheri Ballinger, a US Ambassador for the Women's Brain Project and TBI survivor.
Kris has been the sole caregiver for her grandma since 2017. She talked about how documenting the experience of caregiving online has changed her perspective on caregiving, and allowed her to build a platform for friendship and support.
“In sharing our journey…over these past five years, [it's fulfilling] to hear other caregivers say that they learned so much from just seeing [me] and [my] grandma interact,” Kris said. “I am very fortunate to have started posting.”
Kris also talked about how important patience is as a caregiver. She encouraged all caretakers to try to understand the Alzheimer’s patients perspective by entering their world.
Roxanne took care of her late grandfather with the help of her grandmother. She said she wished she knew about all the resources out there for Alzhiemer’s patients so that she could better care for her grandpa during his life.
Through witnessing her grandpa’s disease, Roxanne learned that Alzhiemer’s is so much more than just losing your memories.
“It’s going to affect their life in so many ways, and the [lives of] the caregiver and the family,” Roxanne said. “[Keep] in mind that your loved one even with Alzhiemer’s are worthy of dignity, privacy, respect and it is our responsibility to make sure they feel validated and that we don’t embarrass them.”
Cheri Ballinger talked about how NAB’s mission attracted her to this organization and inspired her to contribute.
“Sometimes we get so caught up in the science, advocacy, and research, but what I love about Alzheimer's Buddies is the human element, that compassion and empathy aspect. You guys really are the answer for young people, and I think that it doesn't just help the Alzhiemer’s patients but it also helps the college students,” Ballinger said.
The discussion centered around ways to advocate for Alzheimer’s patients, personal stories in caregiving, and caregiver burnout. The panelists ended their discussion by giving meaningful advice to the audience.
“The quote that always comes to me is be kind to everyone because you don’t know what they are going through,” Ballinger said. “Whether that's the caregiver, whether that's the patient, whether that is someone in a wider circle. Don’t give in to being quiet about [the disease] and the stigma. We have to talk about it. It's so important.”
The event ended with a speech by our second keynote speaker, Dan Gasby. Gasby talked about his 28 year relationship with B Smith, his late wife. He emphasized his wife’s dynamics, her kindness, and her ability to accomplish great things. He talked about how he witnessed the progression of Alzhiemer’s in his wife and the impact it had on him.
“Alzheimer’s comes on very slowly. Little things that make you go ‘what's going on?’...and [those things] become more and more prevalent. [My wife] was a person that could walk into a room and light it up with her presence…and smile, [but] that smile went from elevation to just a stare over a period of time,” Gasby said.
Gasby recounted his experience as a caregiver to his wife. He mentioned that the situation was so stressful that it caused him to lose his hair.
“I gave my wife a promise that I would take care of her. As she said to me, way back when, if one of us became infirm we would take care of each other and then go on and live our lives. So, until the day she passed, I was there for her,” Gasby said.
Gasby said that all Alzheimer's Buddies volunteers are doing good and important work.
“Things in life that are challenges either make you better or bitter. The people that I am looking at right now you are better for what you are doing. I want to be your cheerleader, and that's why I am here,” Gasby said.
National Alzhiemers Buddies would like to thank all panelists and participants in the NAB 2021 Symposium. We would also like to thank all of our audience members for attending and supporting our mission.