“You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” ~Patch Adams
For the more than 5 million Americans living with Alzheimer’s disease (AD) today, health care remains fragmented and poorly organized. Their 15 million caregivers—largely managing care at home—have no formally recognized or supported role in the health care system. Unlike other complex diseases with high care delivery demands (e.g. diabetes, heart failure), there is no widely accepted standard of care for dementia. This is highly problematic because health systems rely on such evidence-based standards to determine how clinical issues are prioritized, programs are funded, individuals are cared for, and how to engage both internal and external partners and communities. This shortfall, and the gap between actual health care practice and desirable outcomes for patients with dementia and their caregivers, highlights enormous need and opportunity. We are using this opportunity to engage in collaborative problem solving partnerships with stakeholder groups through the Twin Cities Consortium for Alzheimer’s Research (T-CAR).
T-CAR just wrapped up a six-month strategic planning process, and we more fully understand the unique role we can play in helping to effectively shape dementia ‘health care’ research in the community. As a result of our strategic planning, T-CAR will focus its efforts on a few critical projects over the next 12 months. Our biggest project will be to develop a dementia health services research agenda, in partnership with existing T-CAR members, and a newly forming advisory group of patients, caregivers, front-line clinicians, health system business administrators and leaders, government and community organizations, and dementia researchers. The research agenda will focus on questions that target the most important challenges to these stakeholders, and will contribute to filling evidence gaps to influence the future of dementia care. The advisory group will not only help define and prioritize relevant research questions, but it will also help us to consider the outcomes that matter most. To this end, T-CAR just submitted a PCORI Pipeline to Proposal Tier I grant proposal earlier in the week. In the coming year, T-CAR will also focus on writing and publishing several papers about electronic medical record data quality, issues concerning prioritizing dementia from a public health perspective, and the business case for developing a dementia program for health systems. We are very excited about this new direction for T-CAR.