Nonprofit Launches Institute to Help Dementia Family Caregivers Nationwide

Nationwide, the unmet need of family caregivers is extensive and rapidly growing. One in nine Americans, age 65 and older, suffers from Alzheimer’s and 1 in 3 seniors dies with Alzheimer’s or another dementia.  The majority of these dementia patients are cared for by 16 million family caregivers who are unsupported, suffer from poor health, emotional stress, depression and other severe financial pressures.  Duet: Partners In Health & Aging, a nonprofit organization based in Phoenix, has launched the Meaning & Hope Institute in hopes of improving health and well-being for isolated and underserved dementia family caregivers.  The online platform is free to use and available to any family caregiver of a loved one with dementia in the United States.

Throughout the past four decades Duet has provided help and hope to family caregivers through their virtual and in-person support groups, workshops and webinars, an annual symposium, information and referral, peer-to-peer mentoring, and their signature Finding Meaning and Hope video discussion series based on the work of Pauline Boss, Ph.D. and her groundbreaking book, Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief.

“We began to recognize the unmet need in 2016,” said Ann Wheat, executive director, Duet: Partners In Health & Aging. “We trained and certified Finding Meaning and Hope discussion facilitators by providing them with the information and resources they need to bring this program to family caregivers, free-of-charge, in their communities. Our goal is to reach family caregivers who are struggling due to isolation or lack of services throughout the United States and connect them to the resources and support they need.”

In 2016, Duet secured a three-year investment from Virginia G. Piper Charitable Trust to contract with Dr. Boss to create and pilot the Finding Meaning and Hope discussion series, including nine professionally produced videos, instructional designer-developed guide, family caregiver home practice materials, and marketing brochures. In 2019, The Arizona Department of Health Services selected Finding Meaning and Hope as its first dementia-specific health initiative for county health departments, training 27 county health professionals as Finding Meaning and Hope facilitators. To date, more than 200 facilitators have been trained, and more than 700 family caregivers have completed the Finding Meaning and Hope program.

When 95% of Finding Meaning and Hope participants surveyed reported that the series significantly lowered their stress, Duet recognized the urgent need to make it available to isolated dementia family caregivers beyond Maricopa County in Arizona

In 2021, Duet applied for and received a grant from the National Community Care Corps to build Phase 1 of a web-based virtual community of support for dementia family caregivers. Further, the grant funded a national demonstration project in Seattle, Washington; Sheridan, Wyoming; and New Orleans, Louisiana, and Spanish language pilots in Arizona to demonstrate its effectiveness and scalability. In addition to a second-year of funding from NCCC, the Arizona Department of Health Services, Virginia G. Piper Charitable Trust, and the Diane & Bruce Halle Foundation have also provided a combined total of $573,000 in funding to support expansion of the Meaning & Hope Institute in 2023 and 2024.

“Duet’s Meaning & Hope Institute is here to empower all dementia family caregivers to better care for themselves through access to a community of support and vital resources,” said Wheat. “My inspiration for this institute came from caring for my sister who was diagnosed on her fiftieth birthday with a rare form of dementia. I experienced the isolation and challenges of being a family caregiver firsthand and wanted to do something to help others. Both of my parents also ended up with dementia, so my caregiver journey lasted 14 years.”

In the first year of the grant, 168 people participated in volunteer-led online discussion groups, and 40 facilitators were trained through the Meaning & Hope Institute.  The goal for 2023 is to provide services to 700 family caregivers supported by partnerships in 25 communities nationwide.

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