Need Is Urgent for Better Dementia Care

Abstract

After years of federal and private investment aiming for a cure for Alzheimer's disease and other dementias, the rising societal costs of these conditions – estimated at up to $215 billion annually – has put long-term care in the spotlight. Leaders in the field are seeking to turn attention on dementia care into actions that will improve quality, reduce costs, maximize comfort and well-being, reduce caregiver burdens and stress, and dispel myths and misperceptions about dementia. There is an urgent need for the actions outlined in a new RAND Corporation report, “Improving Dementia Long-Term Care: A Policy Blueprint,” said Regina Shih, PhD, its lead author and senior behavioral and social scientist for RAND. “We know that the vast majority – 75% to 84% – of dementia costs are attributable to long-term care, but the investment isn't aligned to this setting.” She stressed the importance of engaging every stakeholder group – from consumers to policymakers – to address the urgent challenge. “We have to be proactive in addressing the much-needed changes in dementia care before we reach an emergency state, and we are quickly approaching this due to a growing older population, a shortage of caregivers, and lack of funding for care,” she said. “A social movement around dementia care is happening, but not quickly enough to divert a crisis if we don't act now.” The urgent need to focus on dementia care stressed in Dr. Shih's report was mirrored at a late-June “Dementia Thought Leaders Summit,” sponsored by the national Dementia Action Alliance. Speaking at the meeting in Washington, DC, Sandy Halperin, DDS, a retired dentist with early-stage dementia, said, “The dementia crisis in this country is huge.… It's time for us to put a stop to the repetitious, recurring conversations and replace this endless talk with action.” He called for an end to partisan bickering on Capitol Hill and said, “We need politicians with the guts to demand funding [for dementia care] now. It can't be delayed.” AMDA's immediate past president, Dr. Jonathan Evans, CMD, told the group, “It's not enough for us to say ‘fix it.’ We need to specify what we want fixed, how to fix it, and how we will determine if it's been fixed. This is a huge moral, ethical, legal, social, civil rights issue, and we want to make sure all these domains are addressed.” During the day-long meeting, participants including practitioners, patients, patient advocates, caregivers, academicians, and policymakers worked to create an initial framework of strategies to help people living with dementia and their caregivers. The group also discussed ways to make person-centered dementia care, including social and supportive services, of consistently high quality across settings. The participants developed a list of five goals for dementia care action: develop and implement a mobilizing and operating infrastructure; coalesce, connect, and activate people and other resources to build capacity; educate and increase awareness among the diverse dementia care stakeholders; optimize health and well-being; and foster health equity by creating access to and utilization of dementia care resources. The group then discussed possible short- and long-term initiatives to meet those goals. A final list of these, including a full report on the summit, will be available later this year. Interestingly, many of the group's recommendations paralleled those identified in the RAND report. “The summit reached similar conclusions not only about the urgency of this issue but also the need for greater awareness and education and the need for financial solutions,” Dr. Shih observed. This is “monumental,” she said, as change too often is obstructed because multiple stakeholders can't reach agreement. “The fact that our report reached similar conclusions to those reached by the summit participants is very powerful and bodes well for the potential to accomplish our goals.” Before dispersing, the summit participants talked about what they can do immediately to improve long-term dementia care. Some suggested creating awareness via YouTube videos and personal stories shared through social media. Others wanted to start dialogues with legislators and other policymakers. Participants also called for quickly getting the best of existing educational programs and materials about dementia care to consumers, caregivers, practitioners, and others. Jill Harrison, PhD, a research specialist for the consulting company Planetree in Derby, CT, urged the group to act quickly. She shared that her mother faced the challenges of being a dementia caregiver. “For the voices like hers who aren't here, we are doing the work for those folks who are asking, ‘When is it going to get easier?’ Let's not make them wait too long for an answer.” Dr. Halperin stressed the importance of stakeholders pushing themselves and each other to make progress. “Every 3 months or so and every time we need to ask, ‘What have we accomplished?’ Then we need to measure those accomplishments against the goals we have set here.” While the summit's official recommendations are still to come, the RAND report's blueprint is available now. It calls for multiple steps to improve the delivery of long-term care, bolster the workforce that provides those services and supports, and finance these efforts. Dr. Shih and her team interviewed 30 physicians and other practitioners, patients, professional and family caregivers, payers, and federal and state policymakers. They asked participants to identify challenges in the delivery of care, development of policy, and research on long-term dementia care – and how to address these challenges. The group identified 38 recommended actions that the report authors say can be summarized into five objectives: increase public awareness, improve access to and use of long-term care services, promote high-quality person- and caregiver-centered care, provide better support for family caregivers, and reduce the burden of care costs on individuals and families. The RAND authors then evaluated the feasibility and potential impact of each policy option and presented their blueprint. While not every policy option in the report can be implemented immediately, Dr. Shih and her team identified 25 that should be top priorities. “These recommendations are likely to have the broadest impact,” she said. Many actions will require the involvement and leadership of physicians, nurse practitioners, and other practitioners. For instance, they can play a key role in encouraging the use of cognitive assessment tools for early detection of dementia; using patients' periods of contact with emergency, acute, and postacute care to identify people with dementia and their caregivers; improving the coordination of care across settings, promoting the use of quality measurements of the care and support for people with dementia and their family caregivers; and disseminating new and existing dementia best practices. Dr. Shih said she hopes that physicians, nurse practitioners, and other interdisciplinary team leaders will quickly encourage long-term care facility leadership to implement evidence-based dementia care training programs. “We hope that the report will motivate practitioners to ensure the implementation and use of procedures and tools that ensure prompt and accurate assessment and identify signs and symptoms of dementia,” she said. “We know that dementia is prevalent, but it still is underdiagnosed. Practitioners play a key role increasing caregivers' ability to recognize signs of dementia and enable these to be addressed promptly.” Thomas Concannon, PhD, a policy researcher at RAND and coauthor of the report, stressed the importance of identifying the most effective dementia assessment tools and standardizing their use across settings. “To create an accurate and coordinated picture across settings, practitioners need to be using the same assessment tools and using them consistently,” he said. Practitioners also can address one of the top policy options identified in the study: returning patients in long-term care facilities to the community as quickly as possible. “If the person desires to return to the community and receive care in their home, efforts should be made to do so,” Dr. Shih said. She added that these efforts must include care plans, interventions, and education that will minimize hospitalizations and emergency room visits and ease necessary transitions between care settings. Dr. Concannon said that he sees physicians and other practitioners playing a key role in developing “centers of excellence for dementia care.” He described these, based on responses from stakeholders he interviewed, as “home-community-based services, assisted living, and nursing home settings that focused on replicating, translating, and scaling care with a strong evidence base.” He added, “Interviewees also spoke of reducing regulatory barriers to make innovation and experimentation possible in home and institutional care settings.” AMDA and other stakeholder organizations can take the lead on much-needed educational initiatives, Dr. Concannon suggested. “We heard from interviewees across settings that training in degree programs and continuing medical education doesn't really adequately train people specifically to care for people with dementia.” Dr. Shih added, “I strongly urge organizations such as AMDA to take a leadership role on education and help fill in the information and knowledge gaps for consumers and others.” This education, stressed Dr. Shih, must include nonpharmacologic interventions to address dementia-related behaviors. These approaches can also maximize a demented person's engagement and memory, and improve mood and quality of life. There is little funding for efforts to translate research on the impact of such interventions into quality practice, she said. “AMDA and others can make sure nonpharmacologic best practices are disseminated broadly, including to family caregivers.” Although the primary objective of the RAND report was to identify and evaluate policy options, authors also identified five priorities for future studies: applied research on service delivery; research on the costs and quality of dementia care provided by staff, other than nurses, with needed clinical training; studies on how to better finance long-term dementia care; research on health care reform's impact on dementia care, and studies on why certain tax incentives aren't used more by long-term care insurance plans. Dr. Shih stressed that the priorities reflect current “research gaps” in long-term dementia care. The RAND report can be downloaded at www.rand.org/pubs/research_reports/RR597.html.