7

Final Thoughts

At the conclusion of the workshop, Richard Frank asked speakers and moderators to reflect on key themes that had emerged over the course of the workshop. Terry Fulmer observed that the workshop represented a unique moment of a “confluence of ideas” about caring for people who are affected by Alzheimer’s disease and related dementias (ADRD) from organizations such as government agencies, academic institutions, and national non-government organizations and foundations. She encouraged participants to offer their insights and research considerations, noting, “They [workshop sponsor NIA] are asking you, what is the scientific question in front of us that has to be answered in order to move this work [improving quality of care and supports for people living with ADRD and their caregivers] forward?”

CONSIDERING SUSTAINABILITY AND SCALING

Faith Mitchell began by stating that several presentations noted that while payment reform is necessary, it alone is not sufficient to bring about organizational behavioral change to improve quality of care and supports for people with ADRD and their caregivers. She highlighted the importance of sustainability, noting a need to determine how best to get individuals and systems to make long-term commitments to applying new models of care.

Terry Fulmer highlighted a need to engage experts in implementation science to more effectively translate research evidence into practice. She noted the Institute for Healthcare Improvement and the Education Development Center

as examples of organizations with expertise in implementation science.¹ She said implementation science could be used to reliably translate research findings into practice in multiple settings related to ADRD care, including nursing homes and community-based care. She emphasized that systemic change must be based in science, including implementation science.

Julie Robison noted the role of supporting the health care workforce in scaling up effective models. She said several of the evidence-based models that have been effective, such as COPE and PACE, rely on being able to better pay and support the frontline workforce. She added better pay and support were also necessary to the success of the home- and community-based service programs that Kate McEvoy discussed.

SUPPORTING CAREGIVERS

Mitchell emphasized the need to support not just cost savings but quality of life for both person and caregiver so care can be provided effectively. She also noted that a recurring theme across presentations was that people living with ADRD are experiencing their disease within communities. This led her to suggest there is a need to better understand how to effectively use research to better support the role of the community in caring for people living with ADRD. Inouye called the billions of dollars spent by family caregivers in out-of-pocket expenses and lost work “just unconscionable in our country,” and said she would like to see financial support for those caregivers. “We need more geriatricians and more home health care workers who are culturally sensitive and operating at the community level, but we are not realistically going to get those numbers, so we have to deputize our caregivers by providing them the training when they need it across the continuum of care,” said Sarah Lenz Lock. She explained that training programs should prepare caregivers for what could be a 20-year disease course progressing from early-stage ADRD to end-stage ADRD.

Julie Robison drew on an example from cancer care to illustrate an opportunity to better support family caregivers. She noted that many cancer treatment programs include a patient navigator that is a paid member of the health care system. The patient navigator meets with patients diagnosed with cancer as well as their family caregivers and provides education about the diagnosis and treatment options as well as care coordination. She suggested that people diagnosed with ADRD and their caregivers would benefit from including paid patient navigators as part of ADRD care instead of as a separate service that requires out-of-pocket payment.

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¹ See https://www.edc.org/.

QUALITY AND ACCOUNTABILITY: PREVENTING HARM

Inouye noted studies investigating potential models for ADRD care should also integrate quality measurement to support performance improvement and accountability. Frank, reflecting on the personal stories presented by workshop speakers, said, “We’ve got to stop doing bad stuff…that’s at least a place to start.” This is harm, said Fulmer, who encouraged NIA to fund efforts that engage implementation science to bring evidence-based care improvement into practice and reduce the excessive harm experienced by older people in the health care system. She cited the 2001 Institute of Medicine report, Crossing the Quality Chasm: A New Health System for the 21st Century, adding that the report could be applied to ADRD care (IOM, 2001).

Helen Lamont said it is shocking how few quality measures exist for the care of people with ADRD. She noted that diagnosis of ADRD when a person is in the early stages of their disease should be an expectation as well as a standard measure of quality. She added that early-stage diagnosis is currently neither an expectation nor a standard quality measure. She said that whether a home health aide appeared for a home visit is frequently considered a quality measurement for home- and community-based care, highlighting the need to address quality measures in home- and community-based services (HCBS) as well. She encouraged research to develop best practices for developing and implementing quality measures that set high standards for quality of care for people with ADRD throughout all phases of disease progression.

Lenz Lock highlighted the importance of changing expectations related to care for people with ADRD as a means of improving quality of care. She encouraged NIA to consider researching care approaches that focus on managing ADRD as a chronic disease with the potential for improved outcomes across the stages of disease progression. She emphasized an expectation that ADRD care could be and should be high quality, and development of evidence-based quality and outcome measures should lead to better care. She added that “stopping the bad stuff [poor quality care] starts with changing the expectation that it [poor quality care] will [happen].” She also encouraged moving away from the assumption that “an older person is frail and is going to fail,” because that is not necessarily the case.

Robison noted another quality-related theme that appeared across workshop presentations is what matters to the person living with ADRD. She noted that quality care should be centered on what matters to the person living with ADRD. She said that what matters can change over the course of disease. She suggested more research is needed to determine how best to integrate the different components of what matters to that person into the different parts of their care throughout the progression of ADRD.

LONG-TERM CARE

Inouye encouraged making investigating effective payment models for long-term care, such as long-term care insurance, a higher priority. Lamont noted, “One fundamental truth about this population that came out is that they are one of the most vulnerable populations and they are sort of emblematic of everything you want in the entire health care system through the long-term care and end-of-life system.” She said changing the health care system is a good starting point, but this should be integrated with changing long-term care systems, ensuring high-quality end-of-life care and improving support for caregivers. She added, “It is not just one organization’s behavior change, it is changing this entire ecosystem and how we think really about health and well-being from our 40s on into the end of life.” Lenz Lock agreed, adding, “The importance of thinking about this as a spectrum across a life span can’t be overemphasized.”

Robison called for more research focused on improving quality of care for people in the late and end stages of ADRD. She noted that Sherry mentioned during her presentation that the course of ADRD does not fit the trajectory of the current Medicare hospice benefit. Robison suggested research should be directed at improving the integration of palliative care and hospice care for people with ADRD as well as how best to incorporate what matters to patients into care for patients with late- and end-stage ADRD. She noted, there is also a need for a greater understanding of best approaches for preparing people diagnosed with ADRD and their families for the late and end stages of the disease.

CONSIDERING THE ROLE OF TECHNOLOGY

Robison noted Schneider’s observations during his presentation about opportunities to use technology already in use in other industries to improve quality of care and supports for people living with ADRD and their caregivers. She encouraged research into possible cross-application of existing technology. She also suggested research to determine how to effectively incorporate technology and develop algorithms that can support primary care providers to create care plans for people with ADRD as well provide education for families. Lenz Lock noted that artificial intelligence (AI) was now being used to detect people who were likely to shoplift based on their gestures and other movements. She suggested another opportunity for additional research would be investigating the application of AI technology to predict and help older people who are about to fall. Frank suggested another opportunity for research could be related to incorporating smart home technology to better support people with ADRD.

EQUITY

Robison identified equity as an overarching theme of the workshop. She emphasized that ADRD does not affect all racial and ethnic groups the same. She said research funding priorities should reflect the need to keep equity central to the work of improving quality of care and support for people with ADRD and their caregivers. She suggested research efforts should emphasize who is most at risk of developing ADRD and who is most at risk of not receiving quality care or support for caregivers.

Mitchell also noted the overarching theme of equity. She recalled that Alzheimer’s disease rates are twice as high in the Black community as in the White community, and that the Latinx community also has higher rates of the disease than the White community. She closed the discussion by asking, “All the way from mitigation to end of life, is it possible for us to address the needs of families and people living with Alzheimer’s in ways that don’t reinforce existing disparities in outcomes? So can we actually do things differently?”

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