Care & Caregiving: Impact of caregiving measures (Milestone 13.B)

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Success Criteria

• Identification and validation of assessments suitable for use in a range of research contexts including observational and interventional studies and large population-based surveys.

• Identification and validation of at least one sensitive and robust measure for the detection of the earliest manifestations of caregiving burden and for monitoring its long-term consequences.

• Identify and validate at least one improved and cost-effective model of care that includes research on caregiver outcomes following the cessation of caregiving role.

Summary of Key Accomplishments

The success criteria for this milestone have been achieved. NIA has funded many projects responsive to funding initiatives on informal and formal caregiving and on the psychological, financial, and health impacts of caregiving. For example, funded researchers are developing methods to predict risk for adverse caregiver outcomes; testing a psychosocial assessment of caregiver social support, mental, and physical health; and assessing well-being and cardiovascular outcomes to predict resilience and reduce racial disparities in caregiver experiences. Through other projects, researchers are developing and testing a screening tool to assess caregiver outcomes of dementia screening and a method to identify caregivers at risk of poor outcomes. Many projects involve intervention development to promote caregiver health, well-being, and resilience.

The key accomplishments summary is current as of March 2022. 

Accomplishments/Implementation Activities

Funding Initiatives

• PAR-18-027: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01 Clinical Trial Optional) (Reissue of PAR-15-348)
• PAR-18-179: Research on Informal and Formal Caregiving for Alzheimer's Disease (R21 Clinical Trial Optional) (Re-issue of PAR-15-351)
• PAR-19-070 Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R01 Clinical Trial Optional)
• PAR-19-071 Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R21 Clinical Trial Not Allowed)
• NOT-AG-18-057: Behavioral and Social Science Priority Areas in Dementia Caregiver Research”, as a high-priority topic of interest
• RFA-AG-20-03: NIA Behavioral and Social Research LEaders in Alzheimer's Disease and Its Related Dementias (NIA BSR LEADR DP1)
• RFA-AG-20-002: Centers on the Demography and Economics of Alzheimer's Disease and Alzheimer's Related Dementias (P30)
• RFA-AG-20-001: Centers on the Demography and Economics of Aging (P30 Clinical Trial Optional) (P30)
• RFA-AG-20-006: Interpersonal Processes in Alzheimer's Disease and Related Dementias Clinical Interactions and Care Partnerships
• PAR-21-191: Firearm Injury and Mortality Prevention Research (R21/R33)
• PAR-21-192: Firearm Injury and Mortality Prevention Research (R01)
• PAR-21-349: Research on Biopsychosocial Factors of Social Connectedness and Isolation on Health, Wellbeing, Illness, and Recovery (R01 Basic Experimental Studies with Humans Required)
• PAR-21-350: Research on Biopsychosocial Factors of Social Connectedness and Isolation on Health, Wellbeing, Illness, and Recovery (R01 Clinical Trials Not Allowed)
• PAR-21-352: Research on Biopsychosocial Factors of Social Connectedness and Isolation on Health, Wellbeing, Illness, and Recovery (R01 Clinical Trial Required) (https://grants.nih.gov/grants/guide/pa-files/PAR-21-352.html)
• RFA-AG-22-012: High-Priority Behavioral and Social Research Networks in Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias (R24)
• NOT-AG-21-047: Behavioral and Social Science Priority Areas in Dementia Care Partner/Caregiver Research

Research Programs and Resources

• The Cost of Dementia
• Improving Dementia Caregiver Sleep and the Effect on Heart Disease Biomarkers
• Research on Informal and Formal Caregiving for Alzheimer's Disease (R01 Clinical Trial Optional)
• Research on Informal and Formal Caregiving for Alzheimer's Disease (R21 Clinical Trial Optional)
• Agency for Healthcare Research and Quality Systematic Review: Care Interventions for People Living With Dementia and Their Caregivers
• Decadal Commissioned Paper by Pei-Jung Lin: Commissioned Paper on AD/ADRD Health Economics and Public Policy (Paper can be found in Meeting Materials section of meeting website)
• Innovating the Next Generation of Dementia and Alzheimer’s Disease Care Interventions: Addressing the needs of caregivers, care providers, and persons living with dementia, 2017
• National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers

Research Highlights

• Workshop: Multiple Approaches to Understanding & Preventing Elder Abuse, 2015
• Workshop: Decadal Survey Workshop on Nursing Home, Hospice, and Palliative Care for Individuals with Later-Stage Dementia Making Health Systems More Responsive to Dementia
• Workshop: Decadal Survey Workshop on Quality of Life for Individuals with Dementia Preventing Elder Abuse and Fostering Living Well After Dementia Diagnosis
• Workshop: NASEM AHRQ Workshop on Care Interventions for Individuals with Dementia and Their Caregivers

Relevant Recommendations

• 2015 AD Summit: 4B, 4D, and 4H
• 2017 Dementia Care Summit: 3.2 and 3.3
• 2020 Dementia Care Summit: 1.6

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