Carol Elizabeth Owens
Richard Gause is Bishop Kearney High School’s head varsity football coach. He and his wife provide care for his nearly 80-year-old mother-in-law, Viola, who has Alzheimer’s disease.
“A lot of times we talk about the Alzheimer’s disease itself, but where is the component about caregiving?” said Gause, caregiver for his late parents, Al and Francine Gause, who had dementia.
He said that sometimes, caregiving is so challenging that it can take you to a breaking point. “I am here today to just share my story about caregivers.”
Gause was part of a panel at the ninth annual Dr. Lemuel and Gloria Rogers Health Symposium on March 5 at the Edgerton Recreational Center, 41 Backus St. The event was held to educate the community about issues associated with Alzheimer’s disease and the difficulties faced by caregivers. The event featured researchers, therapists, educators and clinicians who talked about the need for greater African American and Latino participation in Alzheimer’s research studies and clinical trials.
Carl Hill, vice president for Scientific Engagement for the Alzheimer’s Association, expressed concern about “the relationship of disparities where African Americans are twice as likely to develop dementia and the situation of African Americans not being a part of many of the clinical trials. … We’ve got research to fund and community action and engagement to understand the barriers of getting African Americans recruited and having African Americans participate in these clinical trials.”
African Americans and Latinos are not the only minorities who need outreach where Alzheimer’s disease is concerned.
Lily Lee, an Asian American, said there is a need for Alzheimer’s research and studies to embrace work with the Asian community. Lee is the communications director and secretary of the Asian Pacific-Islander American Association for Greater Rochester.
“We do not have a cure for dementia at this time, but there are several studies that are on-going right now that are looking at cures for dementia,” said Afeez Hazzan, assistant professor in the Department of Healthcare Studies at The College at Brockport.
Hazzan echoed the need for advancement of racial and cultural diversity in Alzheimer’s research, study, trials and clinical care. He also spoke of the importance of self-care for individuals providing care to people with Alzheimer’s disease. “There are things we can be doing to give ourselves a better fighting chance against dementia — this includes living the best quality life we can live, which means taking care of our health, including mental, emotional, physical and spiritual health, because when caregivers take care of themselves they put themselves in a better position to take care of their family members with dementia.”
Gause has learned the importance of self-care as an Alzheimer’s caregiver, but he needed help to reach that understanding.
“A few years ago, I attended an Alzheimer’s Association seminar, and I was kind of dragged there by my wife, I didn’t want to go, but I got on board and we went as caregivers,” he said. “The Alzheimer’s Association was such a big help for us, providing resources. For instance, we went on a trip — a cruise, and we were able to get resources to put Viola in short-term care for the week so we could enjoy, because it was hard to get assistance [with her care], even with getting siblings to help,” Gause said.
“I think the biggest take-away from my perspective is that caregivers of people who have dementia need to take good care of themselves,” Hazzan said. “Better caregiver quality of life leads to better quality of care for people with dementia and it leads to better quality of life for people with dementia.”