Alzheimer’s Support Is on the Way at Community Health

This story originally appeared on VTDIGGER

Edith’s daughter would give anything in the world to have one day with her mom as she was before Alzheimer’s wiped her memory of the people in her life. “She doesn’t recognize anyone,” said Claudia Courcelle, Director of Care Management at Community Health. “She was part of our family for years.” At one time, Edith was a caregiver herself, working to care for Courcelle’s five children while she was working.

When Courcelle mentioned the idea of creating an Alzheimer’s caregiver support group in Rutland County, Edith’s daughter became emotional when talking about her mom. “Taking care of someone with Alzheimer’s is heartbreaking,” Courcelle said. “She feels so guilty about how she feels about having to take care of her mom. She feels awful she doesn’t have the patience she needs. It’s the worst feeling of guilt ever.”

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. Currently, over 13,000 Vermonters over the age of 65 are living with Alzheimer’s disease, 600 of them with younger onset. That number is projected to climb to 17,000 by 2025 (not including younger onset). Rutland County has the highest rate of people 85+ years old.

Courcelle and her team of care managers recognized the gap in Rutland County and organized a team of volunteers who will facilitate a Rutland County support group starting in January aimed at helping families and caregivers like Edith’s daughter. “There isn’t a support group in the Rutland community right now,” Courcelle said. The Vermont Chapter of the Alzheimer’s Association provides a training program for volunteers and community groups to help build a network of support facilitators around the state.

“My role is to recruit, train and support volunteers to teach education programs and facilitate support groups in Vermont,” said Jordan Cotto, Program Manager Alzheimer’s Association Vermont. “The Community Health volunteers are very organized and knowledgeable, and Community Health has supported the chapter development programs such as Walk to End Alzheimer’s – Rutland, and Reason to Hope dinner.” The team recently completed the training which involves roughly four hours of online education and videos in addition to shadowing virtual or in-person support groups.

The general public isn’t aware of the suffering and struggle paid and unpaid caregivers are going through because it is very hidden. When asked about what it’s like attending education programs or support groups, Cotto said, “You learn about how communicate and support people with Alzheimer’s and other dementias. And more importantly, you connect with people and have a shared experience. Caregivers, from all walks of life have to cope with grief and loss every day. ”

Of the 26,000 unpaid caregivers in Vermont, 2.3 are women, one third are daughters. Alzheimer’s and dementia patients need about five to nine hours of care daily.

Three Community Health care managers – Kelsey Bathalon, BSN, RN, Margaret Thompson, LPN, and Russ Webber, LPN – volunteered to manage the Rutland County support group. The three health care professionals encounter Alzheimer’s patients, their caregivers and families in their daily work.

“Our involvement with care managed patients puts us in direct contact with caregivers and gives us the experience to start this program from what we have dealt with for years from our work,” said Thompson.

“There are caregivers who do ask if there is a support group. And if there is one locally,” said Bathalon. “There is nothing here despite that there is a large population of patients with Alzheimer’s and caregivers who need the connection to others for support. I think it’s a needed service.”

“I’m based in a nursing home,” said Webber. “Families that have people in nursing homes don’t know of these supports, or they are not getting recommended. It’s being overlooked. Knowing that there is a place out there where people can turn is going to be huge.”

The support groups designed by the Alzheimer’s Association create safe environments where caregivers and family members can share feelings, thoughts and experiences.

“We will be facilitating care givers, so they are able to run the conversation in the way that they need it to go and have the time to share what they need to share and get off their chest,” said Bathalon.

“Whatever you want to talk about today is our agenda,” Thompson said. “The bulk of the meeting is going to be about the individual’s frustration of feelings or what they are going through, to get support from us.”

The meetings will not just be for care givers but for family members as well. Webber said in the nursing homes there are people who don’t come and visit because they are too emotional about losing a person they once knew. “If they got this support and information when they first had their loved ones come into the facilities, maybe they would be more involved, and they would be able to deal with it better,” he said.

“Even if they are not caring for the person,” Thompson said, “they are still dealing with a tremendous amount of grief because they have lost that person. The person they knew and loved is gone. They are feeling guilty because they can’t care for them anymore because their loved one is in a worsened state.”

The Community Health Alzheimer’s Support Team has completed the Alzheimer’s Association training and shadow program and is in the process of finalizing the logistics. The monthly meetings will be held at the Community Health Rutland location at 215 Stratton Rd. at 5pm. The date of the first meeting in January will be posted on the Community Health website.

The Alzheimer’s Association offers Helpline 800 272 3900. This unique resource is for caregivers, family members and anyone who needs information about Alzheimer’s disease or dementia.

“Anybody can call any time of the day or night,” Cotto said. The caller can ask about anything from finding resources to what to expect at any stage of Alzheimer’s disease to requesting literature. Callers can request to be connected to master’s-level clinicians who can provide a care consultation and written assessment. “The first step is to reach out and call the Helpline,” Cotto said.

“I’m really proud of Margaret, Kelsey and Russ for participating and stepping up to the plate to be involved,” Courcelle said. “It takes a lot of effort. It’s their own time and it’s something we all really believe in.”

Find out more about Community Health’s preventive programs like care management, diabetes education and behavioral health exclusive to Community Health. Watch for details of the support group on Community Health’s website, ask your primary care provider or call Community Health’s Patient Access Center at 802-779-9169 or toll free at 888-989-8707.

Claudia Courcelle, RN, BSN, MSA, CCM is Community Health’s Director of Care Management. 

Kelsey Bathalon, BSN, RN, is a Community Health Care Manager. A graduate of Castleton University’s nursing program, she joined Community Health in 2019. 

Margaret Thompson, LPN, a Community Health Nurse Case Manager, helps patients better manage their health goals. For over 35 years she has been a licensed practical nurse in hospitals, nursing homes and outpatient offices in New York and Vermont.

Russ Webber, LPN, is the Lead Care Coordinator for Community Health’s Nursing Home Service Line. Webber has worked with disabled adults and at nursing homes for over 20 years.

Jordan Cotto is Program Manager for the Vermont Chapter of the Alzheimer’s Association.  

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. Learn more about Community Health on our website https://www.chcrr.org/.