Care & Caregiving: Partner with community organizations to support a research agenda (Milestone 13.E)

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Success Criteria

• Support research projects that will inform the design of cost-effective, community-based, informal caregiving interventions tools that address unmet psychological and physical health needs of caregivers and which ensure a safe home environment, to enable individuals with AD and AD-related dementias to remain in their homes for as long as possible.

• Identify or develop effective in-home, in-community, off-the-shelf intervention programs and tools to support caregiver well-being and health that aid in the integration of formal and informal care.

Summary of Key Accomplishments

The NIA-funded NASEM Decadal Survey of Behavioral and Social Science Research on AD/ADRD final report includes a chapter on the role of community and notes that more research and data collection is needed on community resources, organizations, and characteristics that facilitate or hinder successful dementia care and caregiving programs. NIA awarded an interdisciplinary network award to the Alzheimer’s Association called Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for PLWD (LINC-AD) that is focused on examining, developing, and disseminating psychosocial outcome measures and care tools for PLWD and care partners that will enable future research and intervention development to better reflect the perspectives and needs of PLWD and their care partners.

The key accomplishments summary is current as of July 2022. 

Accomplishments/Implementation Activities

Funding Initiatives

• PAR-15-348: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01)
• PAR-18-027: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01)
• RFA-AG-19-007: Roybal Centers for Translational Research on Dementia Care Provider Support (P30 Clinical Trial Required)
• RFA-AG-19-016: High-Priority Behavioral and Social Research Networks in Alzheimer's Disease and Alzheimer's Disease Related Dementias

Research Programs and Resources

• A Non-pharmacological Intervention for Patients with Alzheimer’s Disease and Family Caregivers
• Decisions about Cancer Screening in Alzheimer’s Disease
• LINC-AD: Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer’s and Dementia
• Decadal Survey of Behavioral and Social Science Research on Alzheimer's Disease and Alzheimer's Disease-Related Dementias
• ADRC Clinical Core Webinar: Researching New Models of Dementia Care
• IMPACT Collaboratory Knowledge Repository
• Roybals Coordinating Center resource website
• Summit Virtual Meeting Series: 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, Theme 4

Relevant Recommendations

• 2015 AD Summit: 4K, 4I, 5B, 5C, 5D and 5F
• 2017 Dementia Care Summit: 3.4
• 2020 Dementia Care Summit: 2.3

Related Milestones