Alzheimer’s Caregiving: Respite Care/Dementia Community Groups

I first heard about Respite Care, a type of dementia community group, from our great friend, Nancy. Her sister had been volunteering at a program run by her church in another city. She sang its praises to Nancy, who, in turn, began to tell me about it.

In brief, the concept involves hosting sessions throughout the week for people with dementia, run mostly by volunteers, with activities that fully engage the participants.

(I was initially confused by the name Respite Care because nursing homes often offer Respite Care beds for temporary placement so that family caregivers can go out of town, getting “respite” from caregiving. Too, calling these dementia community groups Respite Care places the emphasis on what the caregivers receive, rather than on what the participant receives! But I didn’t name this concept, so, oh well!)

Respite Care is similar to adult day care, but with some significant differences. Adult day care is available all day, every day, while Respite Care typically gathers several days a week, but only for about four hours a day. Adult day care is staffed by employees, and while Respite Care may have a paid coordinator and another employee or two, volunteers make up the majority of “staffing.” There can be as many volunteers as participants at times.

Nancy shared with me all the information she had gleaned from her sister, and together we decided that Birmingham needed Respite Care. Harvey needed the social integration and stimulation offered by a dementia community group! Using our connections with local places of worship, we contacted a few churches that we thought had the needed facilities and volunteer pools.

Soon after we started planting these seeds, I heard that our local Jewish Family Services would soon be starting a Respite Care group. Nancy called the director of the new program, and two months later, about five years into Harvey’s illness, he and Nancy became charter members of Birmingham’s first dementia community group.

Everything Nancy’s sister had told her about dementia community groups’ successes was true!

There was no distinction between the participants and the volunteers; they were ALL participants. Everyone wore name tags, and sat around tables together, enjoying the activity of the moment or eating lunch.

And the activities were amazing in their breadth. During Harvey’s time there, he experienced yoga, sing-a-longs, crafts, exercise, games, cooking, animal visitors, and more.

But by far his favorite activity was balloon volleyball. With participants and volunteers seated in chairs, facing a net and armed with swim noodles, a balloon was batted back and forth across the net. The only rule was that you were to remain seated.

Harvey, however, could not stay seated, so that when a balloon came his way, he would leap up and spike it over the net with his swim noodle to shouts of glee from everyone there!

The dementia community group that Harvey and Nancy experienced had a profound effect on both of them. Nancy says it is one of the most rewarding things she has ever done, and continues to volunteer to this day. Harvey was completely understood and accepted and made to feel a part of the group. He made friends with other participants and was a favorite with the volunteers.

Truly a life-giving experience!