Susan H. McFadden, Ph.D.
Professor Emerita, Psychology, University of Wisconsin Oshkosh
Volunteer, Fox Valley Memory Project
It all began with the discovery of the website for Dementia Adventure, an organization in England that organizes holidays for people living with dementia. As I scrolled through their offerings of everything from a 5-day sailing trip to a 5-day hiking holiday, as well as weekly opportunities for group strolls through parks and nature preserves, I began to think, “Why can’t we do that here?”
Fortunately, my husband (a memory care chaplain) and I had a long relationship with a church camp “up north” in Wisconsin. It has offered camp sessions for children and youth with autism, along with their parents and siblings, for 14 years. In April, 2017, we met with the camp director and the marketing manager to propose a similar experience for families living with dementia, and in August, 2018, we held our first Memory Camp.
For three nights and two full days, 5 families with at least one person having dementia gathered at beautiful Moon Beach Campin St. Germaine, WI, to sing, sit by a campfire, savor s’mores, work on jigsaw puzzles, ride a pontoon boat, do beach yoga, swim, take grandchildren fishing, and relax on the shore of a gorgeous lake. In all, we had 24 campers ranging in age from 5 to 95!
All family groups were able to stay together in individual cabins, each having a bathroom (some with roll-in showers), living space, and bedrooms. One family consisting of a husband with dementia, his wife, and their three grown children laughingly stated that it had been many decades since they had all shared a bathroom!
Three marvelous volunteers joined us and along with camp staff, we created a space where we left dementia stigma behind. In many ways, we took the spirit of Memory Cafés to another level by gathering in one place for several days and balancing organized activities with free time and rest time.
In addition to the volunteers and staff, four talented filmmakers recruited by Brad Lichtenstein, President of 371 Productions, joined us. This company creates “media for the common good” and we hope their work will eventually inspire others to create Memory Camps. We were also privileged to spend one morning engaging in creative liveliness with Brad’s wife, Anne Basting, who led us first in imagining the sounds, tastes, smells, movements, sights, and feelings of camp and then in writing and drawing “postcards from camp” that could be saved or sent.
I have so many beautiful images from Memory Camp that make it hard to select just a few for this little essay. Here are two.
On our second evening together, the activities after dinner were split between “movie night” and “game and puzzle night.” Both involved munching on lots of popcorn. As a group of about six campers gathered around a table in the dining room to work together on a jigsaw puzzle, one wife watched in amazement as her husband entered skillfully into the fun of selecting and placing puzzle pieces. After observing him do this for a while, she went into the great room of the lodge to join a group watching Wizard of Oz. In other words, she knew she could safely put a little physical and psychological space between herself and her husband, knowing both could enjoy being in the moments of puzzle solving and film watching. That morning, this woman had been able to participate in beach yoga while her husband sat contentedly in an Adirondack chair by the lake with one of our volunteers. The day after she got home, she sent me an email saying she will cherish the memories of camp and that her husband “enjoyed his time, too, which doesn’t always happen.”
One family came with a newly diagnosed 68-year old grandmother, her husband, two daughters, and two grandchildren. One night, as we gathered around the campfire, she poignantly described what it was like for her to be with others who could relate to the experience of her family adjusting to this new reality. She also described her county as a “dementia desert,” lacking a memory café and easily accessible programs and services for people having dementia.
On our last evening, we had a “fancy dinner” complete with tablecloths, fizzy grape juice in wine glasses, a delicious multi-course meal, and candlelight. Afterwards, several couples danced, something most had not done in a very long time. This was followed by a talent show featuring songs and jokes from campers, volunteers, and staff. We closed the evening at the campfire and talked about our gratitude for the whole Memory Camp experience.
We hope to have at least one Memory Camp session again next year. Ideally, we would like to have several, with one designed for persons with younger onset dementia and their families. Many of these families still have children at home. The intergenerational element of this year’s Memory Camp was an unexpected delight.
We believe that Memory Camp can be replicated at many residential camps. Surely there are other camp environments with intentional design for physical disabilities and a staff experienced in welcoming persons with cognitive disabilities. Memory Camp represents one small step toward creating a world in which dementia’s tragedy discourse is replaced with stories of joy, hope, love, and meaning.
Susan and John McFadden are authors of Aging Together: Dementia, Friendship, and Flourishing Communities, published by Johns Hopkins University Press in 2011. Susan is currently working on a book about dementia inclusive communities.