Dementia Without Borders: Building community connections to reduce stigma and foster inclusion.

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.

Involving People with Memory Loss in the Development of a Patient Handbook: A Strengths-Based Approach.

A memory clinic used two key approaches in developing a patient and family handbook: partnership with people with memory loss and strengths-based social work practice. Social worker coeditors of the handbook intentionally sought guidance from people with mild to moderate memory loss regarding handbook content, design, and overall tone. A focus group, three sessions of a review group, e-mails, and personal interviews were used to solicit and review input from participants. The editors also incorporated content contributions in the form of essays, quotations, and an original poem from people with memory loss, alongside contributions from clinic staff, university faculty, and community service providers. People with memory loss provided input in five areas: response to a new diagnosis, coping with memory loss, messages to other newly diagnosed people and health care professionals, available community resources, and recommendations for handbook design. The development process reinforced a key message of the handbook: People with memory loss exhibit ongoing strengths, which help them participate in life. The process also ensured that the handbook content and design would be relevant and applicable to its users. The handbook is now regularly distributed as a primary patient education tool in the memory clinic and community programs.

Behavioral Interventions to Prevent or Delay Dementia: Protocol for a Randomized Comparative Effectiveness Study.

BACKGROUND: Currently, people at risk for dementia and their caregivers are confronted with confusing choices about what behavioral interventions are most effective. OBJECTIVE: The 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. METHODS: This 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. RESULTS: In 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. CONCLUSIONS: This 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).