ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Monday, January 26, 2015
Clinical Subcommittee Recommendations
- Dementia Friendly Communities: HHS should encourage efforts to foster Dementia Friendly Communities.
- Improving Clinical Care for Persons Living with Dementia: Evaluate feasibility of measuring care quality and effectiveness by using patient centered goals.
Dementia Friendly Communities (DFCs)
- A Dementia Friendly Community (DFC) resource currently exists on a state basis in Minnesota (Act on Alzheimer’s), which has enabled 33 communities to start local efforts to better support people living with dementia and their care partners.
- Early results from this effort has shown increased awareness of dementia throughout all sectors of the community (law enforcement, businesses, transportation, faith communities, etc.) as well as increased options for care partner support and engagement with the community.
- There may be DFC efforts in other states on a smaller scale that have additional strategies that should be investigated and evaluated as well.
- HHS should support a piloting process of 10-15 communities or states funded by an RFP process that would help seed community efforts and evaluate results. The communities chosen should reflect differences in cultural groups, size of community, and rural/urban locales.
- Should the evaluation of the pilot programs justify replication, then the goal would be widespread adoption of Dementia Friendly Communities by 2020.
- Specific short and longer term success metrics of DFCs might include: increased access to support services for persons with dementia (PwD) and their care partners (CP); new and/or more accessible services in multiple community sectors (e.g., faith, legal, financial, clinical services); increased rates of detection/diagnosis and participation in clinical trials due to normalization and greater awareness of the disease; increased rates of advance planning; increased rates of “living well” for PwDs and CPs via agreed upon indicators.
Improving Clinical Care for Persons Living with Dementia
- HHS should identify measures currently available that would reflect patient perspectives on care satisfaction in various settings.
- Initiate regular measurement and reporting with those that are feasible now and,
- Develop a specific plan to improve measurement capability over the next 3 years so that the perpectives and goals of persons with Alzheimer's and their families are known. Subsequently, the metrics/goals relating to satisfaction with care and timely diagnosis can be developed and also measured.
- For reference, in 2014 the Clinical Care Committee suggested the following measures based on the model in Great Britain:
- I was diagnosed in a timely way.
- I know what I can do to help myself and who else can help me.
- Those helping to look after me feel well supported.
- My wishes for my care are respected.
- To ensure access to high quality palliative care for persons with advanced dementia and their families across all settings
- Prepare a workforce that is competent to deliver care to persons with advanced dementia and their families
- Incentivize documentation and tracking of level of functional and cognitive status to identify people with advanced dementia
- Support research, evaluation and dissemination of models of care to meet the needs of persons with advanced dementia and their families
- Leverage existing mechanisms to ensure access to high quality care for persons with advanced dementia and their families
- Support quality metrics that ensure transparency and accountability for the care of persons with advanced dementia and their families