BackgroundCurrently, people at risk for dementia and their caregivers are confronted with confusing choices about what behavioral interventions are most effective.ObjectiveThe objective of this study is to determine which empirically supported behavioral interventions most impact the outcomes highly valued by patients with mild cognitive impairment and their partners.MethodsThis protocol describes a comparative effectiveness trial targeting 300 participants with mild cognitive impairment and their study partners. The trial is being conducted at the Mayo Clinic campuses in Arizona, Florida, Minnesota, and the University of Washington in Seattle. The study examines the contribution of five behavioral interventions (yoga, memory compensation training, computerized cognitive training, support groups, and wellness education) on primary outcomes of participant and partner quality of life and self-efficacy. In this unique 10-day multicomponent intervention, groups of couples were randomized to have one of the five interventions withheld while receiving the other four. Although the longitudinal follow-up is still under way, enrollment results are available and reported.ResultsIn total, 272 couples have been enrolled in the trial and follow-up visits continue. Outcomes will be assessed at the end-of-intervention and 6-, 12-, and 18-month follow-ups. We anticipate reporting on our primary and secondary outcomes across time points in the next 2 years.ConclusionsThis paper describes the protocol for a randomized comparative effectiveness study of behavioral interventions to prevent or delay dementia. We describe of the rationale, design, power analysis, and analysis plan. Also because enrollment is complete and we are in follow-up phases of the study, we have included enrollment data from the trial.Trial Registration ClinicalTrials.gov NCT02265757; http://clinicaltrials.gov/ctsshow/ NCT02265757 (Archived by WebCite at http://www.webcitation.org/6ueRfwSYv)

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Around the world people with dementia face stigma and social exclusion. An interdisciplinary team from Seattle, Washington, and Vancouver, British Columbia led a collaborative project developing cross-border community partnerships to increase awareness and reduce stigma, promote social participation of people with dementia, and enhance their well-being. The work was organized around three themes - citizen engagement, social entrepreneurship, and creative expression – and involved regular meetings so researchers, community providers, and people with dementia and care partners could know each other better. Dementia Without Borders was organized as an end-of-project celebration, a public festival bringing together community members from both countries to share what the team had learned from each together. The event took place at the Peace Arch, an international park straddling the border between Washington and British Columbia. Over 140 people arrived on their respective sides, created banners, and walked together to the Peace Arch to meet and exchange gifts with those coming from the other country. A picnic shelter was used to display art created by people with dementia and outdoor tables allowed everyone to eat together and listen to poetry readings and musical performances. Feedback was overwhelmingly positive with many expressing a sense of hope and belonging. This project has leveraged the symbolic power of an international border to generate new ideas about fostering social inclusion and reducing stigma for people with dementia. It shows the importance of place and history, building relationships on trust and participation, and being flexible and responsive to opportunities for social innovation.

BACKGROUND: The concept of social citizenship is gaining traction in the field of dementia studies, but as a practical tool to guide development of supports and services, it remains poorly understood. A one year project to promote collaboration between University of Washington in Seattle and University of British Columbia in Vancouver addressed this very question. Activities were undertaken so these communities could know each other better, with researchers, service providers and people with dementia connecting to share knowledge and expertise. PURPOSE: The project culminated with a public festival to put into practice and share some of what was learned over the year. METHODS: People with dementia and care partners helped plan “Dementia Without Borders”, held at an international park straddling the border between Seattle and Vancouver. 150 people came from the US and Canada, including many people with dementia, family members and friends. The day began with a community walk and gift exchange, followed by a meal and creative activities including poetry readings, music, an art exhibit, and quilt making. RESULTS: Evaluation was overwhelmingly positive with people expressing a sense of hope and belonging. For some, it was their first time to speak openly about having dementia, and meeting others in this space was a joy-filled experience. CONCLUSIONS: This project has leveraged the symbolic power of an international border to raise awareness of the importance of social connection for people with dementia. We further explore how the notion of “dementia without borders” extends theoretical and practical understanding of social citizenship.

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