Caregivers Support for Alzheimer’s

10 Warning Signs of Alzheimer’s

• • • Memory loss that disrupts daily life
    • Challenges in planning or solving problems
    • Difficulty completing familiar tasks
    • Confusion with time or place
    • Trouble understanding visual images and spatial relationships
    • New problems with words in speaking or writing
    • Misplacing things and losing the ability to retrace steps
    • Decreased or poor judgment
    • Withdrawal from work of social activities
    • Changes in mood and personality

“I hear caregivers say how guilty they feel,” said Margaret Thompson, Community Health Care Manager and certified Alzheimer’s support group facilitator. “ They tell me they will get upset with their mom because she asks the same question again and again. Then they feel guilty for getting upset.” Thompson said it’s the most common conversation she hears from caregivers – their struggle with guilt.

“Dealing with a partner or parent requires so much of their time and support. It’s normal to feel that way,” Thompson said, as caregivers attending Community Health’s Alzheimer’s support group talk about trying to come to terms with their new roles. There is guilt, sadness, grief, and responsibility. “It’s a hard role. People struggle with it,” she said.

Changing roles within families is a recurring theme that comes up at the support meetings, said Community Health Care Manager Kelsey Bathalon, who partners with Thompson at the support meetings. “Changes in roles between husband and wife or mom and daughter, the child-parent role reversing,” she said. Self-care is the other issue. “Self-care for the caregivers isn’t selfish,” Bathalon said. “The participants are such good support to each other. Caregivers helping caregivers.”

Alzheimer’s disease is a type of brain disease, just as coronary artery disease is a type of heart disease. It is caused by damage to nerve cells (neurons) in the brain. The brain’s neurons are essential to thinking, walking, talking and all human activity.

2023 Alzheimer’s Disease Facts and Figures report

Thompson and Bathalon are in awe of what they have seen over the past four months since the first meeting of the support group that meets the second Tuesday of each month at Community Health’s Allen Pond location in Suite 403. “The participants at the support meetings are very open with each other and have so much experience and advice to share,” said Bathalon. “They are starting to become friends.”

The meeting of up to a dozen Rutland area Alzheimer’s caregivers and family members is one of about 16 Alzheimer’s support groups in Vermont. “It’s all volunteer-led,” said Jordan Cotto, Program Manager for the Vermont Chapter of the Alzheimer’s Association. “We have about 42 volunteers statewide.”

“The team at Community Health has been unbelievable,” Cotto said. “Their model is very unique – It’s a whole team approach.” Bathalon and Thompson are volunteer facilitators, trained by the Vermont Chapter of the Alzheimer’s Association. They also are full-time healthcare professionals working as Community Health care managers with patients in Rutland and Addison counties.

What Happens at Support Group

Thompson and Bathalon said the hour-long caregiver support meetings are actually run by the participants. “They go around the table, each sharing what’s going on in their situation,” Thompson said. “Then other participants offer support. We do too, but it’s guided by the other support members who have a lot of hands-on experience. That’s very helpful for other participants.”

“We see a lot of tears and frustration, laughs, funny stories while getting to know each other,” Bathalon said. And the discussions get serious, with recommendations for how to handle delicate situations. “We had a discussion, for example, about places to go where there are family bathrooms,” Bathalon said. “A husband who is a caregiver, can’t go into the women’s bathroom with his wife. That is where the family bathrooms are important.”

“You can get the information and educational parts online,” Bathalon said “But you can’t get the comradery that happens in the support meetings. The participants give so much support to each other. They say, ‘Hey, you are doing a good job!’”

Who Are The Caregivers?

According to the 2023 Alzheimer’s Disease Facts and Figures report, the number of Vermonters 65 and older diagnosed with Alzheimer’s disease will increase 31% by 2025. The report also includes data about who the caregivers are:

• • two-thirds of dementia caregivers are women
  • over half of the caregivers are providing assistance to a parent or in-law with dementia
  • approximately 10% of caregivers provide help to a spouse with Alzheimer’s disease or another dementia
  • about 30% of caregivers are 65 and older
  • an estimated 1.2 million additional direct care workers will be needed between 2020 and 2030, more new workers than in any other single occupation in the U.S
  • more than 11 million Americans provide unpaid care for a family member or friend with dementia, a contribution valued at nearly $340 billion

Cotto said the staff and volunteers at the Vermont Chapter of the Alzheimer’s Association are truly invested in the mission and typically have experience with someone who has Alzheimer’s or dementia. “I have a really strong group of coworkers and a very strong internship program with UVM.” she said. The national organization also offers a helpline, 800-272-3900. “The helpline is so important,” Cotto said, “because anyone, a caregiver or family member, can reach out for information and be connected with us.”

Support Group Information

The Community Health Rutland support group has been so successful Bathalon and Thompson said they are considering adding a second meeting. “If the group is a dozen people, there would be a need to split into two groups and offer two different times and days,” Bathalon said.

“People have so much to say, share and offer,” Thompson said. “An hour isn’t long enough for a dozen people. Five or six in a group is best. It’s a more intimate group where strong bonds are formed.”

Community Health supports the Vermont Chapter of the Alzheimer’s Association and will be sending a team to the annual Walk to End Alzheimer’s Vermont Chapter in Rutland. Register a team and walk with us on September 23.