Community Program Tackles the Stigma and Isolation of Dementia

first_imgby, Meg LaPorte, ChangingAging ContributorTweet11Share8Share4Email23 SharesNever underestimate the power of someone who has cared for a loved one with Alzheimer’s disease. Some might say that contending with the stigma and isolation of the disease makes one stronger and better able to take on any challenge. Some might also say: “There has to be a better way to help caregivers navigate through this process.” Which is what Melanie Braverman and her friend, Molly Perdue, PhD, said to each other after caring for a family member for eight years. “We knew there had to be a better way for others to do it,” says Braverman. So, a little more than two years ago, the duo set out to create a program in their community of Cape Cod, Mass., that would help many others dealing with the disease and its impact. The result was the Alzheimer’s Family Support Center of Cape Cod, a non-profit organization that offers an array of services to individuals with dementia and their caregivers.Today the center serves 300 people each month through counseling, support groups, personalized care planning and consultations, dementia training, and more.A unique feature woven into each of the center’s events is that they are designed to be age- and dementia-friendly, which means that the programs are organized in a way that enables individuals of all ages and disease states to participate in the program. In addition, all volunteers and staff are vigilant about assisting caregivers and individuals with dementia navigate an event or support group so that everyone is safe.Braverman notes that it was important for Perdue and her to utilize a social model instead of a medical model of care. The result is a program that is not encumbered by regulatory requirements and restrictions, she says.With a multi-strand approach to helping individuals with dementia and their caregivers, Braverman says “we’ve taken a very pragmatic approach to our services, with three main ‘strands’ of services,” she says.The first strand consists of caregiver support groups (30 of them throughout the Cape) run by professional counselors and social workers. Simultaneous to the support groups are onsite activities for individuals with dementia so that caregivers don’t have to worry about their loved ones while they are in the group.The second strand, says Braverman, is ongoing phone support for caregivers and individuals with dementia. “Our professionals call on people regularly to check in on them, to see how they are doing,” she says. “This is particularly important for people in the early stages of the disease.” What’s more, the individuals are free to call the center for support at any time. The third strand includes one-on-one and family supportive counseling delivered by professionals. “Our job is to do as much as we can to support caregivers—and therefore their loved ones—through counseling around the issues that come up when caring for someone with dementia,” says Braverman. Some of the issues that may arise are family dynamics around child-parent relationships, concerns about how to properly care for their loved ones, and more. The center’s success has drawn the attention of NYU researchers. It is one of several programs in the country to be asked to participate in the NYU study known as the Counseling and Support Intervention for Caregivers: An Evidence-Based Intervention for Caregivers of People with Alzheimer’s Disease. According to NYU’s research, a combination of individual counseling and additional support interventions, such as support groups and the availability of ad hoc counseling—such as is offered by the center—are effective in reducing caregiver depression, diminishing negative caregiver appraisals of “behavior problems” in the person with dementia, and delaying nursing home placement of the person with dementia.Braverman and Perdue hope to make their service model replicable across the country so that other communities can create similar programs. “We believe that our research-based best practices are highly replicable for other areas of the country, and we’ve had some interest in it,” Braverman says. Additional features of the center’s services include community education, a clearinghouse of information and referrals, community events and activities, and an entry point to other partners in the community that offer support.  Funding for the center comes from the community via grants and private donations. “Ninety percent of it goes back into serving the community,” notes Braverman. Dr. Bill Thomas and his Age of Disruption roadshow are headed to Cape Cod on May 16, where he and his colleagues offer a “Disrupt Dementia” workshop that brings a new perspective to creating healthy aging communities.To contact the Alzheimer’s Family Support Center of Cape Cod, call
(508) 896-5170
or email at: [email protected]  Related PostsEvery Minute Counts: A Call To ActionThis week PBS will air Alzheimer’s: Every Minute Counts, a documentary framed as “an urgent wake-up call about the national public health threat posed by Alzheimer’s disease.” While it’s true Alzheimer’s disease poses a public health challenge, much of the suffering experienced by people living with dementia is socially imposed…Trust at StakeThe full text of Eilon Caspi’s recent journal article “Trust at stake: Is the “dual mission” of the U.S. Alzheimer’s Association out of balance?” is now available for free thanks to an anonymous donor seeking to raise awareness of the gross imbalance of effort and funding between the Association’s dual…While Awaiting A CureWe owe it to ourselves and our communities to stand up and demand that, while we await development of a cure or treatment for Alzheimer’s Disease, resources are to also be spent on figuring out how to live well with dementia.Tweet11Share8Share4Email23 SharesTags: Age of Disruption Alzheimers Care Partner Dementialast_img

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