Dementia Care in the Context of COVID-19: The Impact for Families
Event Date & TimeMarch 16, 2021 at 10am-1pm
LocationOnline via Zoom
This event will be hosted online via Zoom. A link will be emailed to the registrants closer to the date of the event.
The symposium will include Katie Brandt who was a caregiver to her husband who was diagnosed at 29 with Frontotemporal Degeneration and for her father who is living with Alzheimer’s Disease. We will also hear a conversation between Jason Resendez, the Executive Director of the UsAgainstAlzheimer’s Center for Brain Health Equity and Daisy Duarte who is a family caregiver, clinical trial participant, and advocate for the representation of Latinos in dementia research. We will also have a panel who will share findings from a project to understand how COVID-19 has impacted dementia care and the experiences of families living with dementia. Discussions will center around disparities for minority populations with a focus on Latinx communities.
This symposium and the research of the Stakeholder Advisory Council is funded through a Patient-Centered Outcomes Research Institute(PCORI) Eugene Washington PCORI Engagement Award (10725-UTHSC).Register now
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About the Speaker(s)
- Katie Brandt is an advocate, a caregiver, and a parent. Katie is a passionate advocate in the rare disease community, inspired by her experience as a former FTD caregiver for her late husband. Today, Katie is an Alzheimer’s caregiver for her father. Her experiences of love and loss embolden her to keep moving forward, determined that the cure of tomorrow is not so far from the care of today.
Katie is the Director of Caregiver Support Services and Public Relations in the Frontotemporal Disorders (FTD) Unit at Massachusetts General Hospital. As Co-Chair of the National Alzheimer’s Project Act (NAPA) Advisory Council on Alzheimer’s Research, Care and Services, Katie connects with experts in the field of Alzheimer’s Disease and related dementias and contributes to federal policy initiatives and research priorities that promote health equity and person-centered care at every stage of dementia.
- Daisy Duarte Daisy Duarte is a caregiver advocate for the LatinosAgainstAlzheimer's, bringing a critical voice to UsAgainstAlzheimer’s advocacy, policy, and research discussions about the growing impact of Alzheimer’s on the Latino community. Daisy was a caregiver for her mother Sonia who lived with Alzheimer's for 10 years. Daisy tested positive for the gene linked to early onset Alzheimer’s Disease in 2014 and is currently enrolled in the Dominantly Inherited Alzheimer's Network (DIAN) clinical trial at the Washington University School of Medicine in St. Louis.
As one of the few Latinos enrolled in Alzheimer's clinical trial research, Daisy is committed to raising awareness of the importance of Alzheimer's research and funding. According to Daisy, “It’s so important for Latinos and other minorities to engage in clinical trial research, we need to make sure that our communities have a voice in the research process. We have to take responsibility for our families and for ourselves.”
- Jason Resendez is the Executive Director of the UsAgainstAlzheimer’s Center for Brain Health Equity and head of the LatinosAgainstAlzheimer’s Coalition. From clinical trial inclusion to paid family leave for family caregivers, he champions brain health equity at every level of the healthcare system. In 2020, Resendez was recognized as one of America’s top 20 “Influencers in Aging” by PBS Next Avenue.
Jason has contributed to peer-reviewed research on the socioeconomic impacts of brain health inequities and on the science of community engagement in brain research. He has been quoted by The Washington Post, The Wall Street Journal, STAT News, Time, Newsweek, Univision and others on health equity issues.
- A panel session will feature members of a Stakeholder Advisory Council for a project led by Dr. Carole White at the School of Nursing UT Health San Antonio. The panel will discuss findings from their research to understand how COVID-19 has impacted dementia care from the perspectives of people living with dementia, family caregivers, and health and social care professionals.