Framework for Families Impacted by Dementia Introduced at the Gerontological Society of America's Annual Scientific Meeting

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Northeastern University’s Bouve College of Health Sciences and Seniorlink introduce VOICE framework

Nearly 5.2 million Americans suffer from Alzheimer’s disease, and by 2050 that number is expected to nearly triple to 14 million. With between 60-70 percent of those with dementia cared for by unpaid caregivers, Seniorlink, in partnership with Northeastern University’s Bouve College of Health Sciences, is now testing a new evidence-based, conceptual framework for understanding the experience of caregivers of individuals with dementia.

The program, Vital Outcomes Inspire Caregiver Engagement (VOICE), is a home and community-based program aimed at enhancing caregiver engagement and outcomes in dementia management.

Northeastern University’s Carmen Castaneda-Sceppa, MD, Ph.D.; Irina Todorova, Ph.D.; Hope Turner, MSW; Aziza Jamal-Allial, Ph.D. and Alice Bonner, RN, Ph.D.; along with Seniorlink’s David Young, Ph.D., introduced VOICE at the Gerontological Society of America’s Annual Scientific Meeting this past weekend in Orlando, Fla.

“With this model, we are trying to understand the needs, perceptions, experiences, challenges and fulfillment of caregivers and staff caring for people with dementia,” said Irina Todorova, adjunct associate professor at Northeastern University, who helped develop the model. “We are applying what we learn to improve caregiver tools, optimize caregiver engagement in dementia care, reduce the caregiver burden and optimize workplace practices and staff support.”

Caregiver Homes, a division of Seniorlink, currently assists over 500 community dwelling persons with dementia supported by as many as 1,500 primary caregivers and family members. With the VOICE model of Structured Family Caregiving, registered nurses and care managers engage caregivers through detailed assessments, monthly visits and a caregiver-focused technology platform. A collaborative effort by Seniorlink, Northeastern University and the Educational Development Center (EDC), the VOICE pilot program is currently operating in four out of the 33 Caregiver Home branches operating nationally. As part of the initiative, specialists (registered nurses and care managers) are introduced to a new training model for dementia caregivers, created by Bradley Karlin, Ph.D. of the EDC. Northeastern University performed rigorous needs assessments of Caregiver Homes staff and caregivers of persons with dementia, which have been used in the development of the training model, educational materials and for reporting purposes.

“We are dedicated to creating solutions that allow elders to get the care they need, where they want it: within their own homes surrounded by family and loved ones” said Tom Riley, CEO of Seniorlink. “Caregiving, particularly dementia care, is fulfilling but demanding work. By partnering with Northeastern, we are gaining a much deeper understanding of the family caregivers’ needs, how we can better alleviate their stress and ultimately support them to make sure the person with dementia is getting the best care possible.”

Initial qualitative analysis revealed that caregiving is often a mixed experience that is both fulfilling and difficult. Despite the stressors that negatively impact caregivers, such as socioeconomic status and challenging dementia care demands, caregiver lives are enhanced with personal and social resources, skills, knowledge and confidence. Demographics, religion, culture, race, ethnicity, along with organizational influences like staff training, interventions and best practices, also had an impact on caregiver engagement.

 

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