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From the LEAD Coalition

Paving The Path Report From NAC-LEAD Coalition May 28, 2019

The National Alliance for Caregiving, in partnership with the LEAD Coalition, has released “Paving the Path for Family-Centered Design: A National Report on Family Caregiver Roles in Medical Product Development,” which explores the vital roles that family caregivers can play in shaping biomedical research and development, regulatory decision-making and healthcare delivery. Specifically, the first-of-its-kind report begins a dialogue on how to incorporate the critical knowledge of caregivers in developing pharmaceutical products, biologic therapies, diagnostics and medical devices. The report provides recommendations for leveraging caregivers’ enormous reservoir of information and observations about the conditions their care recipients experience and associated health outcomes.

National Report: Paving The Path Report From NAC-LEAD Coalition (PDF)

Overview (PDF)

Medicaid and Dementia Issue Brief December 18, 2017 An issue brief on how and why Medicaid is vital for people with dementia and their families.
Issue Brief: Medicaid and Dementia (PDF)

Health Reform Issue Brief March 3, 2017
An issue brief on how a repeal or reform of the Affordable Care Act might affect people with dementia and their families.

Issue Brief: Health Reform and Dementia (PDF)

Fact Sheet: Health Reform and Dementia (PDF)

Government Resources

National Alzheimer’s Project Act

  • Summary – The National Alzheimer’s Project Act
  • National Alzheimer’s Project Act
  • National Plan to Address Alzheimer’s Disease: 2016 Update

Governmental Resources

  • World Health Organization – Dementia Facts
  • World Health Organization Report – Dementia: A Public Health Priority
  • Administration for Community Living: Alzheimers.gov – For the People Helping People with Alzheimer’s
  • Centers for Disease Control and Prevention: Alzheimer’s Disease
  • Centers for Disease Control and Prevention: FastStats on Alzheimer’s Disease
  • ClinicalTrials.gov – A service of the U.S. National Institutes of Health
  • Medicare: Caregiving
  • National Institute on Aging: Alzheimer’s Disease Education and Referral Center
  • National Institute on Aging: Alzheimer’s Disease Clinical Trials
  • U.S. Department of Veterans Affairs: Dementia Care (including Alzheimer’s)
  • U.S. Department of Veterans Affairs: VA Research on Alzheimer’s Disease
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