Given West Virginia's population -- particularly as an older, smaller one compared to the majority of other states, the numbers in ours can seem numbing in their scope.
According Alzheimer's Association, West Virginia Chapter Executive Director Sharon Covert, more than 40,000 West Virginia residents now live with Alzheimer’s disease, with well over 100,000 family members and friends serving as their foremost caregivers in recent years. Those numbers do not include those still undiagnosed with or at risk for the progressive, debilitating disease in which symptoms can appear up to 20 years before being diagnosed as Alzheimer's.
The Alzheimer's Association's state chapter is headquartered at 1601 Second Ave. in Charleston, allied with Martinsburg, Morgantown and Parkersburg regional offices. Covert cited some of the chapter's many services, such as maintaining a network of support groups throughout the Mountain State. Through a partnership with the West Virginia Bureau of Senior Services, she said, residents also have access to a 24/7 Helpline, free care consultations, information and referral, online resources, free education programs and free caregiver coaching.
The needs -- and challenges -- are increasing, Covert said.
"It's a disease on the rise. And, unfortunately, less than half of the people who have Alzheimer's get a formal diagnosis," she said.
COVID-19 risks and health and safety concerns and constraints have been deleterious to Alzheimer's care and support measures over the past two years, she added.
"In the past, the number of caregivers [in West Virginia] was, maybe, around 105,000 family members or friends providing unpaid care each year," Covert said. "We've found, during COVID, the number of caregivers has fallen to about 85,000 people in the state now. People don't necessarily want everybody in their house now.
"Quarantine has had a tremendous effect on patients. And isolation is contributing to an escalation of the disease. We all have had effects from quarantine, but I think that it's even magnified more when you look at this disease. Shut-ins have become really shut in by this. People are afraid that by letting people into their homes that they'll get COVID," she said.
Covert said another possible setback to advanced Alzheimer's disease treatment is a preliminary proposal, released Jan. 11 by the Centers for Medicare & Medicaid Services, to limit Medicaid coverage of the drug Aduhelm.
Last June, the FDA approved Aduhelm to treat Alzheimer’s disease, but the CMS' proposal, via a National Coverage Determination decision memorandum, expected to be decided in April, allows its use only if patients are part of a clinical trial for the drug.
Aduhelm is a monoclonal antibody administered as a monthly infusion. In clinical trials, the drug reduced amyloid plaques in the brains of people who have Alzheimer’s disease, but its overall efficacy is still undergoing clinical study.
"This could treat people as young as their 40s and 50s who are showing signs of mild cognitive impairments," Covert said, "but this means they would have to be in early-stage cognitive impairment with biomarkers to support that. Last week, their draft decision was, 'We'll cover it, but only for people in clinical trials and using placebos.'
"That could prevent 443,000 potential West Virginians from having that treatment," she said. "Those studies take a long time and someone with early-stage dementia may not have that time. I think it's discriminatory at best. No other class of drugs have been put through these hoops before this ruling, and these are people who've paid their Medicare premiums, just like everyone else, who are being affected."
According to the CMS website, members of the public can submit comments on the proposed National Coverage Determination at www.cms.gov through mid-February.
In Kanawha County, the Dementia Friendly St. Albans group’s Alzheimer's/dementia support group meets from 3 to 4 p.m. on the second Wednesday of each month at the Hansford Center, 500 Washington St. in St. Albans. More information about these meetings is available by contacting one of its coordinators, Cheryl Cummins, at 304-747-8127.
Cummins said the St. Albans group started meeting three months ago. "Sommers Brightwell at the Hansford Center and I took courses to become support group facilitators," she said. "My mother had dementia and passed away last December, which is why I got involved with Dementia Friendly St. Albans in the first place.
"Our support group is designed to provide emotional and educational support for caregivers, who also give each other support and ideas of how to deal with their situations and helping them to develop the skills they need. We also have literature and resources and we encourage the caregivers to maintain their own physical and emotional health, which is important.
"So far, we've had people come who are at the beginning and end of the journey. One woman has just been diagnosed with dementia and she and her husband are planning ahead for what's to come for them," Cummins said. Dementia Friendly St. Albans was officially recognized as a dementia friendly community, the first of its kind in the state, in March 2019.
"A dementia-friendly community is one that cares about its neighbors, cares about its residents with dementia, one that sees the signs and understands the needs and one that acts to provide a more trained and educated St. Albans," Dementia Friendly of St. Albans co-founder and St. Albans Vice Mayor and Council Member-at-Large Walter Hall explained.
A Charleston-based support group also meets on the second Wednesday of every month at 11:45 a.m. at the chapter's Second Avenue headquarters on the West Side. Call 304-343-2717 for further information.
Monthly meetings are also held at other sites throughout the state. Most of the current meetings are being conducted by Zoom, Covert said, adding, "If anything good came out of COVID, we saw the need to have remote support groups and have implemented those." She said other benefits are that remote meetings enable access to family members living outside the area and meetings can viewed after their initial presentations for those who were unable to view them live.
Cummings said the St. Albans group will continue to meet in person as long as COVID-19 guidelines allow.
Covert said the Alzheimer's Association state chapter is approaching legislators during this session to advocate for free training for West Virginia first responders to more successfully interact with those with Alzheimer's in emergency situations, routine calls and other encounters.
"We've gotten support from many members of the Legislature for mandatory training," she said. "Last year, they signed into law two hours of training for first responders for working with people with autism. We want to add training for Alzheimer's disease. It wouldn't be mandatory for volunteer first responders, such as volunteer firefighters, but for paid professionals.
"We've been fortunate in this state for not having had an incident where something went very wrong in public with someone with dementia and first responders didn't know how to handle it," Covert said. "We've already done training with people in the state, such as St. Albans and Boone County. Every single one of them said they have encountered someone with dementia.
"We gave them our Helpline to call us and readdress the situation from then on if it occurs."
Covert said the two hours of sessions, if enacted this session, would be free, evidence-based training, available in person or as an online option to accommodate first responders' schedules.
The Alzheimer's Association, West Virginia Chapter serves all 55 counties in West Virginia, as well as six counties in eastern Ohio. For additional information, visit www.alz.org/wv, send email correspondence to wvinfo@alz.org or call 304-343-2717 or 800-272-3900 (the 24/7 Alzheimer's Helpline). The organization's Facebook page can be found at @AlzheimersAssociationWVChapter.
According Alzheimer's Association, West Virginia Chapter Executive Director Sharon Covert, more than 40,000 West Virginia residents now live with Alzheimer’s disease, with well over 100,000 family members and friends serving as their foremost caregivers in recent years. Those numbers do not include those still undiagnosed with or at risk for the progressive, debilitating disease in which symptoms can appear up to 20 years before being diagnosed as Alzheimer's.
The Alzheimer's Association's state chapter is headquartered at 1601 Second Ave. in Charleston, allied with Martinsburg, Morgantown and Parkersburg regional offices. Covert cited some of the chapter's many services, such as maintaining a network of support groups throughout the Mountain State. Through a partnership with the West Virginia Bureau of Senior Services, she said, residents also have access to a 24/7 Helpline, free care consultations, information and referral, online resources, free education programs and free caregiver coaching.
The needs -- and challenges -- are increasing, Covert said.
"It's a disease on the rise. And, unfortunately, less than half of the people who have Alzheimer's get a formal diagnosis," she said.
COVID-19 risks and health and safety concerns and constraints have been deleterious to Alzheimer's care and support measures over the past two years, she added.
"In the past, the number of caregivers [in West Virginia] was, maybe, around 105,000 family members or friends providing unpaid care each year," Covert said. "We've found, during COVID, the number of caregivers has fallen to about 85,000 people in the state now. People don't necessarily want everybody in their house now.
"Quarantine has had a tremendous effect on patients. And isolation is contributing to an escalation of the disease. We all have had effects from quarantine, but I think that it's even magnified more when you look at this disease. Shut-ins have become really shut in by this. People are afraid that by letting people into their homes that they'll get COVID," she said.
Last June, the FDA approved Aduhelm to treat Alzheimer’s disease, but the CMS' proposal, via a National Coverage Determination decision memorandum, expected to be decided in April, allows its use only if patients are part of a clinical trial for the drug.
Aduhelm is a monoclonal antibody administered as a monthly infusion. In clinical trials, the drug reduced amyloid plaques in the brains of people who have Alzheimer’s disease, but its overall efficacy is still undergoing clinical study.
"This could treat people as young as their 40s and 50s who are showing signs of mild cognitive impairments," Covert said, "but this means they would have to be in early-stage cognitive impairment with biomarkers to support that. Last week, their draft decision was, 'We'll cover it, but only for people in clinical trials and using placebos.'
"That could prevent 443,000 potential West Virginians from having that treatment," she said. "Those studies take a long time and someone with early-stage dementia may not have that time. I think it's discriminatory at best. No other class of drugs have been put through these hoops before this ruling, and these are people who've paid their Medicare premiums, just like everyone else, who are being affected."
According to the CMS website, members of the public can submit comments on the proposed National Coverage Determination at www.cms.gov through mid-February.
In Kanawha County, the Dementia Friendly St. Albans group’s Alzheimer's/dementia support group meets from 3 to 4 p.m. on the second Wednesday of each month at the Hansford Center, 500 Washington St. in St. Albans. More information about these meetings is available by contacting one of its coordinators, Cheryl Cummins, at 304-747-8127.
Cummins said the St. Albans group started meeting three months ago. "Sommers Brightwell at the Hansford Center and I took courses to become support group facilitators," she said. "My mother had dementia and passed away last December, which is why I got involved with Dementia Friendly St. Albans in the first place.
"Our support group is designed to provide emotional and educational support for caregivers, who also give each other support and ideas of how to deal with their situations and helping them to develop the skills they need. We also have literature and resources and we encourage the caregivers to maintain their own physical and emotional health, which is important.
"So far, we've had people come who are at the beginning and end of the journey. One woman has just been diagnosed with dementia and she and her husband are planning ahead for what's to come for them," Cummins said. Dementia Friendly St. Albans was officially recognized as a dementia friendly community, the first of its kind in the state, in March 2019.
"A dementia-friendly community is one that cares about its neighbors, cares about its residents with dementia, one that sees the signs and understands the needs and one that acts to provide a more trained and educated St. Albans," Dementia Friendly of St. Albans co-founder and St. Albans Vice Mayor and Council Member-at-Large Walter Hall explained.
A Charleston-based support group also meets on the second Wednesday of every month at 11:45 a.m. at the chapter's Second Avenue headquarters on the West Side. Call 304-343-2717 for further information.
Monthly meetings are also held at other sites throughout the state. Most of the current meetings are being conducted by Zoom, Covert said, adding, "If anything good came out of COVID, we saw the need to have remote support groups and have implemented those." She said other benefits are that remote meetings enable access to family members living outside the area and meetings can viewed after their initial presentations for those who were unable to view them live.
Cummings said the St. Albans group will continue to meet in person as long as COVID-19 guidelines allow.
Covert said the Alzheimer's Association state chapter is approaching legislators during this session to advocate for free training for West Virginia first responders to more successfully interact with those with Alzheimer's in emergency situations, routine calls and other encounters.
"We've gotten support from many members of the Legislature for mandatory training," she said. "Last year, they signed into law two hours of training for first responders for working with people with autism. We want to add training for Alzheimer's disease. It wouldn't be mandatory for volunteer first responders, such as volunteer firefighters, but for paid professionals.
"We've been fortunate in this state for not having had an incident where something went very wrong in public with someone with dementia and first responders didn't know how to handle it," Covert said. "We've already done training with people in the state, such as St. Albans and Boone County. Every single one of them said they have encountered someone with dementia.
"We gave them our Helpline to call us and readdress the situation from then on if it occurs."
Covert said the two hours of sessions, if enacted this session, would be free, evidence-based training, available in person or as an online option to accommodate first responders' schedules.
The Alzheimer's Association, West Virginia Chapter serves all 55 counties in West Virginia, as well as six counties in eastern Ohio. For additional information, visit www.alz.org/wv, send email correspondence to wvinfo@alz.org or call 304-343-2717 or 800-272-3900 (the 24/7 Alzheimer's Helpline). The organization's Facebook page can be found at @AlzheimersAssociationWVChapter.
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