There is a significant need to support patients with Alzheimer’s disease and related dementias and their families with health care planning towards the end of life. Notably, there is a need to provide consistent support and education during the planning process. Health care providers must do more to provide this needed education and support. One such idea is to improve the coordination of care via a high-level education ...more »
Too many academic institutions take forever to open trials and process patients, causing huge loss of potential patients who give up waiting or who are simply never contacted after expressing interest. Continue the trend toward opening trials at community centers where MDs have hospital access for invasive procedures to increase enthusiasm for enrollment and provide access to trials for more patients.
The VA provides 1741 domestic medical facilities with some degree of mental health and/or primary care provided to veterans and qualifying family members. Eight conditions are targeted in Mental Health, but not Alzheimer's. However, screening for dementia is offered, so could be a tapped as a source of recruitment for research. A cursory review of the attached report appears to include any efforts aimed at a large population ...more »
True commitment to engaging, recruiting and retaining members of minority or underrepresented populations in Alzheimer's research, could be demonstrated by ensuring that clinical investigators,"steering committees"and research teams are consistently representative. Strategies that have proven successful, though perhaps more labor and cost intensive, should be promoted. Building enduring relationships in minority communities ...more »
Develop strategy to evaluate and reduce implicit bias in the workplace: Assess and quantify implicit bias at the academic and community research sites: operationalize the metrics and the approach to meet this goal. Assess diversity of study staff, researchers, and principal investigators. Identify and provide resources to facilitate this assessment. Identify existing resources for cultural competency training at the home ...more »
Identify ways to expose study staff to life with dementia in the target community (e.g. Wash U Duo Program). Identify ways to include those living with dementia on the study staff, Advisory Boards, and local engagement teams.
This could include: 1) Identifying the project’s target populations and develop a staffing and outreach strategy that is appropriately sensitive to this goal. 2) Developing employment descriptions that capture relevant experiences with the target communities and specialized skills (e.g. language facility, familiarity with the community). 3) Identifying opportunities to leverage staffing resources from other academic ...more »