Circle of strength: Support group offers comfort, hope to dementia caregivers

By Ryan McBride

A small group of men and women gather in the small second-floor meeting room at Deer Lodge Centre. They laugh and joke and catch up on the latest goings-on, passing around the snacks and coffee. To all outward appearances, they’re old friends reconnecting after a long time apart. But as they settle into their seats they begin to grow more quiet, their attention turning inward.

They remind me, an outsider, of veterans, bound together by an intense, shared and difficult-to-communicate experience on the front lines.

For some, the war isn’t over yet. The enemy is dementia. Each of these women has cared for a loved-one living—now or in the past—on the Dementia Special Care Unit at Deer Lodge Centre. They meet here monthly as members of the Deer Lodge Centre Dementia Caregivers Support Group. Their numbers swell and wane as the months go by. Newcomers are always welcome. Social worker Lindsay Bacala, along with the managers and clinical resource nurses from the Dementia Care Program, facilitate the group.

Before today’s guest speaker arrives, some of the members tell me about the ways their companionship has helped them through difficult times. They describe the group as a safe, welcoming place to share experiences, ask questions, discuss issues without shame or judgment.

Doreen, whose husband lives on Deer Lodge’s Tower 7, says she’s learned a lot from the group about how to care for someone with Alzheimer’s—including what she was already doing right. “That affirmation can be incredibly important.”

Susan, whose husband lives on 3 West, says having familiar faces to turn to on the ward makes her feel like she’s part of a family that cares.

Joyce, whose brother lives on Tower 7 and husband lives on 3 West, praises the unbelievable patience of the staff in dealing with the unpredictable and sometimes aggressive behaviours that come with Alzheimer’s.

Doreen muses: “I cared for my husband at home for years before he came here. The need to care for him really took over. It’s hard to give that up and trust others.”

On this, they all agree and say the staff at Deer Lodge have earned that trust, in part by making family members an essential part of a resident’s support team.

“Before we offered this group, I worked as a program nurse for 10 years,” says Arlis Decorte, a clinical resource nurse who works on the unit and helps coordinate the support group. “I noticed that the more comfortable and supported a family member feels on the unit, the more involved they get, and the resident’s quality of life improves as a result.”

Members originally met informally to create quilts for fundraisers. Arlis says he deliberately steered the quilting circle into a support group after observing how much “sharing that lived experience with one another really made a difference.”

The group’s monthly meetings usually focus on a topic chosen by members. Past topics have included care management, communicating with people living with dementia, dealing with behaviour problems, diet, advanced care planning, recreation, physiotherapy, and the latest research.

Presenting today’s topic is Alanna McNaught, a Deer Lodge pharmacist, who talks about medication for people living with dementias. She tells the group about the complexities of treating dementia—which comes with a host of behaviours that may be symptoms of other health issues—with medication.

“We take a careful look at which symptoms are appropriate for us to treat, and which may be due to some other underlying cause. Always,” she says, “we strive to administer the smallest dose needed, intervening only when necessary.”

Dementia is not a steady state, Arlis adds, nor is it a downward spiral. “It’s unique to each person living with it.”

Deer Lodge’s Alzheimer’s caregiver support group doesn’t benefit only the members. Insights from group meetings help the healthcare team guide new caregivers through their experience more effectively. And it gives them someone they can turn to with questions or treatment ideas.

As group members hug and make their farewells for another month, Arlis tells me the group’s real triumph is the space it creates to connect.

“People caring for loved ones with dementia often feel so ostracized. So much of the focus is on the patient and not the caregiver. Here they discover this warm, welcoming circle, and all these smiling, laughing faces, and they feel the possibility of hope for themselves again.”

To find out more about the Alzheimer’s Caregiver Support Group at Deer Lodge Centre, contact Lindsay Bacala, Social Worker, Dementia Care Program, at 204-831-2138.