To date, research has largely focused on describing the experience of patients with advanced dementia and the care they receive. This work has delineated abundant opportunities for improvement. Addressing those opportunities must be the overarching objective for advanced dementia research in the coming decade. shows the research priorities needed to achieve that objective, categorized by discipline; lists specific goals within each discipline; and provides examples of research initiatives for each goal.
Priorities for Advanced Dementia Research Over the Next Decade
Designing and testing interventions that promote high-quality, goal-directed care across health care settings will be a cornerstone for future research in advanced dementia. An example of such a study would be an RCT of an intervention to avoid unwanted hospitalizations of nursing home residents with advanced dementia whose goals of care are primarily comfort. Interventions that reduce disparities in the quality of care provided to patients with advanced dementia who are of various ethnic and racial backgrounds are also needed. Clinical trials in advanced dementia, while essential, will not be straightforward to conduct; interventions are often complex, settings are not well-suited to research (for example, nursing homes), and outcomes are challenging to define and measure. Nonetheless, the success of prior RCTs that faced similar challenges demonstrates that these hurdles can be overcome (56
Health policy research is essential to move advanced dementia care forward. A primary goal of this research should be to identify policies that incentivize cost-effective and evidence-based care without comprising the quality of palliative care provided to these vulnerable patients (49
). Expanding access to the Medicare hospice benefit and broad-based palliative care programs is a key part of the equation. For example, prior work clearly shows that the 6-month hospice eligibility guidelines are problematic (16
). Thus, research that explores novel approaches to enroll dementia patients into hospice is warranted. Comparative effectiveness research that evaluates different strategies to treat common complications (such as pneumonia) would also inform policy.
The anticipated complexity of clinical interventions and policies to improve advanced dementia care necessitate the inclusion of implementation science as a key priority to ensure that they can be effectively translated into practice. The Patient Protection and Affordable Care Act presents a timely opportunity for demonstration projects that evaluate alternative financial structures to reduce unwarranted and unwanted hospitalizations for nursing home residents with advanced dementia, such as bundled payments or capitated programs, similar to the Program of All Inclusive Care for the Elderly (which integrates Medicare and Medicaid financing for frail elderly patients) (49
Although progress has been made in outcomes measurement, many gaps remain. For example, there is no measure to quantify the stress that families of nursing home residents with advanced dementia experience. A disease-specific utility-based measure that takes into account health-related quality of life must be developed to conduct comparative and cost effectiveness research. Finally, greater delineation of meaningful effect sizes of existing measures is necessary to plan trials that will use these instruments as outcomes (31
The research priorities set forth in this report align with those of the National Alzheimer’s Project Act, which was signed into law in January 2011. This projects calls for the expansion and coordination of research and health services delivery across federal agencies for Alzheimer disease and related dementias in order to achieve 2 top priorities: improve the health outcomes of patients with dementia and reduce the financial burden of the disease at an individual and societal level. The act further prioritizes the need to reduce disparities and improve the coordination of dementia care, and it stresses the need for initiatives aimed at prevention and early detection of dementia. However, if the top priorities of the act are to be met, significant focus must be placed on the millions of persons in the United States in the advanced stage of the disease, for whom there is great need and opportunity to improve patient outcomes, contain health care expenditures, reduce disparities, and better coordinate care.
Accomplishing these priorities will depend on several factors, including research funding. To date, roughly 63% of advanced dementia research has been supported by grants from the National Institutes of Health. However, with the National Institutes of Health budget at unprecedented lows, greater support from other federal agencies and philanthropic sources will be critical. In addition, the number of senior researchers dedicated to this field is small. Ongoing work will require close collaboration and intellectual and financial investment into the training of young investigators. Dissemination of key research findings through the education of policy-makers, health care providers, and the public will be an essential step in translating this work into better advanced dementia care. Finally, the millions of Americans with dementia and their families are perhaps the most important stakeholders in this research. Ultimately, their advocacy and enfranchisement may play the greatest role in driving advanced dementia research forward through the next decade.