On March 17, West Virginians from around the state joined together for the annual Alzheimer’s Association Advocacy Day. This event is typically held in-person at the state capitol, but was held via Zoom call due to COVID-19 restrictions.
Attendees heard Delegate Danielle Walker of Monongalia County read the governor’s proclamation recognizing the 38,000 residents of the Mountain State who have been diagnosed with Alzheimer’s disease and the 85,000 caregivers providing over 145 million hours of unpaid care for their loved ones. Due to COVID-19 restrictions and individuals following quarantine protocol, the number of unpaid caregivers in the state decreased from 2019 to 2020. However, the total hours of care they provided increased. In other words, COVID-19 was hard on everyone, but harder for those who were already isolated.
Jeanne Caldwell, who lost her mother and grandmother to Alzheimer’s disease, provided a moving account of how her family has been affected by dementia and its fallout. Also featured were updates about the tremendous partnerships cultivated by the association groups such as the WVU Rockefeller Neuroscience Institute, which began a monthly Project ECHO to provide local physicians with an opportunity to discuss dementia cases, diagnosis, and referral to the Alzheimer’s Association’s free care and support services.
The effects of quarantine and COVID-19 caused most families navigating Alzheimer’s and dementia to feel even more isolated and alone than ever. The disease causes people to withdraw under the best of circumstances. However, further challenges have arisen during COVID-19, as those with loved ones in memory units of long-term care facilities were separated from their family members for months. On Advocacy Day, insult was added to injury when this disease further prevented these families from speaking one-on-one to their legislators about the challenges they face every day and the additional barriers presented by quarantine.
The Association’s 2021 Facts & Figures report was released in March, and stated that, in 2019, 832 West Virginians lost their lives to Alzheimer’s disease. There were 347 additional dementia deaths during the COVID-19 pandemic, which is 18.8% higher than ever before. The unprecedented 2,624 West Virginia COVID-19 deaths to date is staggering. With over 70% of West Virginians age 65 and over currently fully vaccinated, and clinics open to all residents age 16 and over, we will see that number decline and halt. However, deaths from Alzheimer’s disease and dementia will continue until we have a viable treatment and cure.
The Alzheimer’s Association, West Virginia Chapter provides a network of support groups throughout the state, which are currently accessed remotely through Zoom meetings and conference calls. Average attendance for these groups increased during the pandemic and remains higher than ever. Through a partnership with the West Virginia Bureau of Senior Services, residents continue to have access to a 24/7 Helpline (800-272-3900), free care consultations, information and referral, online resources, and free education programs as well as free caregiver coaching.
In summary, no one fights this disease alone. With the legislative session wrapping up in mid-April, it is imperative that those individuals and families navigating Alzheimer’s and dementia reach out to their representatives and share their experiences and needs.