In the US, fewer than 20% of dementia caregivers use respite services. In fact, the majority are not even using general support services until the later stages of disease set in. And we know that the chronic stress that results from not getting a break can wreak havoc on a caregiver’s physical and mental well-being.
That’s why I sat up and took notice of the Caregivers’ Corner, a program feature now being used very effectively by several memory cafés in the Cornwall region of the UK. The Caregivers’ Corner is a table set off to one side of the memory café meeting room, where caregivers can come together for a portion of the meeting to share caregiving concerns and tips, separate from those they are caring for. Having this social time with other caregivers also provides an opportunity for a short break from caregiving.
It sounds simple conceptually, but if I had not seen it in action, I would have wondered how this could be done in a way that is respectful and maintains social inclusiveness. In an established memory café, where relationships have already formed, the idea that this table is just for caregivers can be made subtly through word of mouth, and gently maintained with the help of café volunteers. The Caregivers’ Corner that I observed participated in the group activities, but the placement of the table at a distance from the rest of the tables seamlessly provided a needed break for participating caregivers. Sue McDermott, the Cornwall Memory Café Network Facilitator, says that the Caregivers’ Corner also provides an important opportunity for guests with memory loss to experience independence and engage with peers on their own terms.
The success of these Caregivers’ Corners suggests that the social nature of memory cafés can cultivate a level of trust and connection that allows caregivers to participate in a respite experience that they may not seek out in a more formal context, and gives guests with memory loss an opportunity for some independence without the separation anxiety that can occur when caregivers are completely absent. It would be interesting to know whether participating in Caregivers’ Corners also helps caregivers consider a move towards using more formal respite options available in their community. But either way, the Caregivers’ Corner is a simple and respectful way for memory café programs to enhance their ability to provide patrons with peer connection and a much-needed break from their normal routines.
Over the past two decades, community-based programs for people with memory loss and their caregivers have proliferated in the US in an attempt to alleviate the very difficult day-to-day psychological and social challenges associated with Alzheimer’s disease and other forms of dementia. Research indicates, however, that many of the common support group and daycare services now available are underutilized and that people with memory loss and caregivers living in the community continue to suffer profoundly from isolation and lack of support.
The ultimate goal is to reduce the stigma associated with these diseases. And while a shift in attitude appears to be underway, the process is slow, and people need tangible help now. As a first step forward, one option is to help neighborhoods form supportive social groups that offer a safe haven from stigma and an opportunity for people with memory loss and their caregivers to receive peer support, together, in a nonjudgmental environment. In addition to providing social engagement and a support network, neighborhood community gatherings have the potential to provide caregivers with a brief respite from their normal caregiving routine and another opportunity to receive information about community resources and services available in their area.
In 1997, such a neighborhood-based community program was developed in Holland, and similar programs have proliferated over the past 15 years, particularly in Great Britain and Australia. The memory café (also called “Alzheimer’s café”) was originally described by Dutch psychologist and founder Dr. Bère Miesen as “an informal way for patients to make contact with each other, to receive a consultation, and to feel at home.”
In their current form, memory cafés are social events that occur monthly or bimonthly for a few hours in locations such as neighborhood community centers, church meeting halls and existing cafés. As the name indicates, coffee, tea and light snacks are provided and efforts are made to keep the atmosphere casual. The programmatic structure can vary, but the most important elements, according to many memory café participants, are the social nature of the gatherings and the fact that caregivers and care receivers can attend together, with no distinction made between those who have memory loss and those who do not. These programs are gaining momentum in the US, with about 60 new cafés now in operation.
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Are you interested in developing one of these programs in your community? Or are you already involved with a memory café and looking for additional ideas, news and related research? Please join us on this journey to inspire expansion of the memory café movement! We welcome your input, comments and feedback.
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