The Spirit Remains: Respite programs for adults with dementia adapt to COVID-19

Birmingham programs for adults living with dementia are learning how to adapt to the COVID-19 pandemic while still maintaining strong connections to their participants.

Founders Place at St. Luke’s Episcopal Church is one of these ministries devoted to “shar[ing] love, laughter and a continued sense of community,” according to volunteer Cheryl Mayer.

The goal of the program and others like it is to foster a meaningful and joyful environment for adults living with dementia while providing respite to their caregivers.

When COVID-19 forced Founders Place to suspend its onsite program in March, Executive Director Susanna Whitsett and Assistant Director Susie Caffey created Founders Place at Home, “a respite program without walls.”

“The spirit of the program remains while the delivery has changed,” Whitsett said. “Of course, everyone wishes we did not have to adapt; we all would much prefer to meet in person. But it’s about living in the circumstances that we have all been given and doing what we can to make the best use of our resources.”

While more program content is provided by Founders Place at Home than before the pandemic, participation requires more facilitation on the part of the caregiver, Whitsett said. “We provide tools that caregivers can utilize to creatively engage their person with memory loss.”

Founders Place at Home creates a personalized experience for each participant, or “friend,” and their caregiver depending on their living situation, level of care and different interests, Whitsett said.

There are many opportunities for volunteers to get involved with Founders Place at Home.

For example, volunteers deliver and mail activities, conduct Zoom sessions with participants, create videos (devotions, exercise, music sing-a-longs and art instruction) and reach out through letters, phone calls and FaceTime calls to participants to promote the same close relationships they had before the pandemic hit, Whitsett said.

Founders Place is also grateful for the financial support of the St. Luke’s Foundation, the Daniel Foundation and the Birmingham Community Foundation, Whitsett said. “People know the social and emotional benefits [Founders Place] provides both to participant and caregiver, and they want to be involved and support something that is good for the community as a whole.”

Each of the program’s friends has a personalized “Connection Plan” created by the program, which has become a “lifeline” for many who must isolate themselves to avoid any possible contact with COVID-19, Whitsett said.

One friend is living in an assisted living community and is not allowed to leave his room due to the threat of the virus. One of his caregivers has told the Founders Place team how much their friend looks forward to “Founders Place day” every week when he can participate in one of the program’s Zoom sessions, Whitsett said. It has become the “social highlight” of his week.

Another one of the program’s friends is a former artist. Volunteers regularly send her a “Connection Bucket” filled with art supplies and detailed craft instructions, Whitsett said. These activities provide a creative outlet for her that she has had for so much of her life.

The volunteers for Founders Place at Home are a huge reason that the virtual and socially distanced transition has been so smooth.

“We absolutely have the best volunteers ever,” Whitsett said. “And the reason is because this is volunteer work that feeds the soul. It is reciprocity in action, just like so many of us have been taught and experienced in our lifetimes. Through their giving, they are receiving. Founders Place is blessed with committed, caring, and capable volunteers that give their time and talents generously.”

One important way volunteers can share their time is by participating in birthday parades.

When a friend has a birthday, they are treated with a birthday “drive-by,” yard visit, “window wave” or miniature parade, Whitsett said. Friends who are too at-risk for in-person visits will receive birthday cards and phone calls.

“It is a rich tapestry of loving actions, and I am so grateful to them,” Whitsett said about the program’s volunteers. “Everyone is battling a certain amount of COVID fatigue, so we have to dig deep to keep going, keep adapting.”

Alabama is home to nine of the 18 respite care programs like it in the nation. Many of these are based in the Birmingham area, including Encore at Canterbury United Methodist Church and Anchor at Asbury United Methodist Church.

Encore, which offered four hours each day of programming prior to the pandemic, has divided their volunteers into “Friend Circles,” which focus on one friend in the program, according to Program Director Patti Williams.

Encore supports their friends in many of the same ways as Founders Place. They also hold monthly events at Canterbury such as parades or scavenger hunts where participants don’t have to leave their cars.

“This gives us a chance to see everyone’s faces (though masked), have some socially-distanced fun and show them how much we love and miss them,” Williams said.

Like Encore and Founders Place, Anchor hosts Zoom sessions for the program’s participants as well as support groups for their caregivers, said Anchor’s program director, Gina McIntyre. Volunteers have even created a homemade ice cream truck to deliver treats to their friends.

“I have been amazed at how generous the volunteers continue to be with their time even though we are not meeting face to face,” McIntyre said. “Many of our Anchor friends do not remember who we are, but they continue to remember how we make them feel. I hear over and over how loved they feel.”

While the volunteers at Founders Place at Home are unable to provide the same amount of respite to caregivers as before, they are providing some relief and a sense of routine.

“In the end, this program is primarily about the relationships, and those can exist whether we are physically together or not,” Whitsett said.

The strength of these relationships can be found in a worn path from one friend’s house to her mailbox because she receives plentiful packages of artwork, poetry, jokes and more — all from Founders Place — five days a week.

The CARES (Caring for Adults through Respite, Enrichment and Socialization) program at Collat Jewish Family Services is normally held in Cahaba Heights in the former St. John’s Church for the Deaf.

However, COVID-19 forced its temporary closure. “We grieved the loss of the safe community for our people living with dementia,” said Pam Leonard, program director.

Staffers began making weekly calls to caregivers. “We marveled at how they adapted, yet we did receive feedback that providing 24/7 care while being isolated from the support of your family and friends is stressful,” Leonard said.

CARES moved its in-person monthly support group to a twice-weekly virtual support group, Leonard said. The program also offers virtual meetings for people living with dementia, staff and volunteers.

These meetings “allow us to keep our connection with each other,” Leonard said.