Alzheimer’s is Something We Are Talking About at Community Health

At the age of 50, East Middlebury resident Pamela Smith was having intermittent memory loss. Her primary care providers thought menopause, poor sleep, stress and depression could be the cause, she said. “Often people are being diagnosed with anxiety and depression,” said the UVM master’s degree, school of social work graduate during testimony before a Vermont legislative committee. “I am a mental health clinician. Anxiety and depression are not the cause of memory loss.”

Two years later she was diagnosed with younger onset Alzheimer’s disease. Now, at the age of 55 she’s lost her career and retirement dreams. Her diminished perception and vision make it difficult to read and not safe to drive. She can’t cook by herself. She rewrote her advance directive and made funeral arrangements. The future is uncertain – Alzheimer’s can evolve in as few as four or as many as 20 years. It’s devastating emotionally, Smith testified.

The hardest part for Smith is watching the impact on her family and the knowledge that two generations before her suffered from Alzheimer’s. “There is no system of care,” she said. “We have to be our own case manager calling state agencies to put together a patchwork of help.”

“It’s hard when you have somebody you love and they don’t know you.”

Claudia Courcelle, Community Health Director of Care Management

Currently, unpaid family members are Smith’s care givers. Approximately 600 Vermonters have been diagnosed with early onset, and Smith said, “Since no one is counting, it’s easy to overlook that we exist.”

During testimony before the Vermont House Committee on Human Services in April, Smith and advocates for funding Alzheimer’s and dementia education, support and awareness programs presented evidence of a system that is not cognizant of the clinical, physical, emotional and financial impact of dementia and Alzheimer’s.

Claudia Courcelle, Community Health’s Director of Care Management, recognized the lack of support for dementia patients and their caregivers, and has aligned with the Alzheimer’s Association of Vermont to form a support group in Rutland County.

“I’ve seen that illness with my own dad, how it impacted his life,” said Courcelle who has recruited volunteers from Community Health’s care management team to be trained as a support group to address the current and projected impact in Rutland County. “We need to find out what we can do to help people who develop dementia,” she said, “and support the care givers.”

Alzheimer’s disease is the fifth leading cause of death in Vermont and the sixth-leading cause of death in the United States overall. It’s one of the factors stated in a federal grant request for funding a Community Health geriatric-focused practice in Rutland. Rutland County has the highest rate of people 85+ years old. In addition, Vermont ranks second in the country for the percent of people over age 50.

“A memory clinic would be included as part of a comprehensive geriatric program to reflect the emerging and future needs of our community,” said Community Health Director of Communication and Development Jill Jesso-White.  Senator Patrick Leahy, a longtime supporter of the Federally Qualified Health Center (FQHC) model of care, supported the funding proposal.

In the next three years, Vermont is projected to have a 30% increase in people over the age of 65 who are diagnosed with Alzheimer’s. “Vermont is an aging state,” said Megan Polyte, policy director for the Vermont Chapter of the Alzheimer’s Association. “By raising awareness through community conversations and policy we’ll try and reduce the stigma a bit so people can see that they are not alone.”

“We know the number one risk factor for dementia is age, and we are all aging. It’s something we need to talk about.”

Megan Polyte, Policy Director, Alzheimer’s Association, Vermont Chapter

“Alzheimer’s is the most well-known form of dementia,” said Polyte. “The general public is not aware of the suffering and struggle unpaid care givers are going through in our community, because it is very hidden.”

There is no treatment for Alzheimer’s. So, Polyte said a nationwide effort is underway to elevate the importance of awareness and the need to address questions like – What does this look like for my family generationally? What does the future look like for me as a person who has Alzheimer’s that is progressing?  What does this look like for an unpaid caregiver? Are there trained caregivers who can support families?

The Community Health Needs Assessment released last year for Rutland County identified “supporting an aging community” as one of the four priority initiatives. The 2020 US Census, noted in the assessment, estimates that 23.6% of the population in Rutland County is over 65. The assessment also included the 2013 Vermont Department of Health estimate “that by 2030 Rutland County’s population of people aged 70+ would increase by 114% (Jones & Schwarz, 2013).”

Here are some statistics Polyte shared:

• 13,000 Vermonters over 65 are living with Alzheimer’s; 600 with younger onset
• That number is projected to climb to 17,000 by 2025 (not including younger onset)
• Alzheimer’s is the leading cause of disability in older adults
• Of the 26,000 unpaid caregivers in Vermont, 2.3 are women, one third are daughters
• Alzheimer’s and dementia patients need approximately five to nine hours of care daily

“I don’t think people know how costly this disease is,” Polyte said. “Unpaid care givers spend twice as much as unpaid caregivers for people with other diseases.”  Polyte said families spend double out of pocket to care for those with dementia because of the level of care needed. “It’s the sixth consecutive year that the cost of caring for Alzheimer’s nationally has surpassed a trillion dollars,” she said.

The goals of the Alzheimer’s Association and their support groups include:

• Increase access to care and support, establish and strengthen programs that provide support for caregivers
• Improve quality of care through education and workforce development including dementia training for primary care providers
• Advance risk reduction through early detection and diagnosis
• Create a dementia friendly Vermont, by ensuring a statewide response to Alzheimer’s and dementia

The Alzheimer’s Association has a live 24/7 Alzheimer’s Help Line for care givers, family members and anyone who needs information about Alzheimer’s or dementia – 800 272 3900.

Care specialists and master’s-level clinicians provide reliable information and support all day, every day.

Join the Walk to End Alzheimer’s Saturday, September 24^th in Rutland and support the Alzheimer’s Association awareness campaign.

This article appeared on VT Digger in September, 2022. Follow this series of real-life stories over the next three months, every Friday, as we discuss primary care, value-based care and Community Health’s role in providing high quality health care services that include support groups and educational programs. Find out more about Community Health’s preventive programs and watch for our follow up stories about care management, diabetes education, Alzheimer’s support and behavioral health programs exclusive to Community Health.

Claudia Courcelle, RN, BSN, MSA, CCM is Community Health’s Director of Care Management. Courselle is organizing a Community Health Alzheimer’s support group for those diagnosed with dementia and their caregivers. Watch for details about the support group this fall.

Megan Polyte is Policy Director for the Vermont Chapter of the Alzheimer’s Association.  Polyte along with Alzheimer’s patients, caregivers and other advocates, testified before the Vermont House Committee on Human Services in spring 2022 considering S.206 “An act relating to planning and support for individuals and families impacted by Alzheimer’s Disease and related disorders” which was signed by the Governor in May.

Community Health is Vermont’s largest Federally Qualified Health Center (FQHC), a network of primary care, pediatric, behavioral health, dental and pharmacy services with offices in Rutland, Brandon, Castleton, West Pawlet and Shoreham. Community Dental offices are located in Rutland and Shoreham; Community Kids Dental is in Rutland; Community Health Pediatrics is in Rutland and Behavioral Health services are available at all of our locations. Community Health Express Care Centers, open 7 days a week, are located at the Rutland and Castleton Community Health Centers. For more information about Community Health, check our website https://www.chcrr.org/.