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 Alzheimer’s Council Recommends New Care, Research Protocols


In a new report to the Advisory Council on Alzheimer's Research, Care and Services, experts offered a list of recommendations to improve scientific priorities for research on persons with dementia and their families. The findings are a follow-up to last year’s first-ever National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers held at the National Institutes of Health (NIH).

Issues addressed at the summit included research on care needs and supportive approaches for people with dementia, how to involve dementia sufferers as study participants, and research on models of care for persons living with dementia and their families across the disease trajectory.

The recommendations from the NIH gathering are organized into 12 major themes:
  1. ​Heterogeneity of Persons Living with Dementia and their Caregivers
  2. Research Methods to Develop More Effective Dementia Care, Services, and Supports
  3. Caregiver Relationships, Roles, and Networks
  4. Clinical Approaches and the Lived Experience of Dementia
  5. Engaging Persons Living with Dementia and Caregivers in Research
  6. Dementia-Related Terminology, Nomenclature, and Stigma: Words Matter
  7. Comprehensive Models for Dementia Care, Services, and Supports
  8. Strategies for Scaling and Disseminating Existing Evidence, Drawing Upon Implementation Science
  9. Living Places, Physical and Social Environments, and Processes of Care for Persons with Dementia, Including Those Who Live Alone 
  10. Financial Burden and Out-of-Pocket Costs to Persons Living with Dementia and their Caregivers
  11. Ensuring an Adequate and Qualified Workforce to Support Persons with Dementia and their Caregivers 
  12. Technology to Support Persons with Dementia and their Caregivers
Inside these categories are scores of suggested changes, like, for instance the call to develop accurate, up-to-date descriptive information about the characteristics, care needs, and services used by dementia patients and their caregivers. This recommendation seeks to better determine the number and proportion of such individuals by differences in the causes of the disease, be it the age of onset, symptoms, stage, and severity of the person's dementia.

These characteristics and others can impact their needs for assistance and the acceptability and effectiveness of programs and services intended to benefit them and the types and amounts of medical, residential, and in-home care and services they receive. 

Recommendations also delved into conducting research to increase information about the differences in dementia trajectories and disparities among those living with the disease, like women, or specific racial and ethnic groups.

The report said once more research has been accumulated, it should be shared with facilities and other stakeholders in the caregiving space. “Identify important implications for particular groups, e.g., implications for researchers and research funders about needed changes in research topics and methods to accommodate heterogeneity, and implications for care and service providers, payers, and regulators about the heterogeneity of their clients and beneficiary populations,” the findings said.

Visit https://tinyurl.com/yay7x9tb for the full report.
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