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By Geralyn Magan

LTSS Center Co-Director Robyn Stone and geriatrician Christopher Callahan offer their take on an advocacy model to encourage dementia-capable systems change.

In September 2021, the Journal of the American Geriatrics Society published findings from a five-year project that was designed to encourage and monitor dementia-capable systems change among managed care health plans in California.

In October 2021, Christopher Callahan, a geriatric medicine physician researcher at Indiana University, and Robyn Stone, co-director of the LeadingAge LTSS Center @UMass Boston, suggested in a follow-up editorial that, while promising, the advocacy model didn’t go far enough.

EVALUATING A SEVEN-STEP ADVOCACY MODEL

In 2013, California launched Dementia Cal MediConnect (Dementia CMC) to help California managed care health plans improve care for people living with dementia who qualify for both Medicare and Medi-Cal, California’s Medicaid program. Dementia CMC, a partnership between local Alzheimer’s organizations and 10 managed care health plans, was led by the California Department of Aging and Alzheimer’s Los Angeles. Researchers at the University of California San Francisco (UCSF) served as evaluators.

The Dementia CMC team implemented a seven-step advocacy model designed to encourage and help health plans change the way they provided dementia care. The team:

1. Identified dementia-capable best practices to set as systems change indicators
2. Identified and leveraged public policies in support of systems change indicators.
3. Identified and engaged champions.
4. Developed and advocated for a business case to improve dementia care.
5. Identified gaps in dementia-capable practices.
6. Provided technical assistance, tools, and staff training to address the gaps in dementia-capable practices.
7. Tracked systems change through participant observation and interviews with key informants representing partnering organizations or government entities.

Brooke A. Hollister and colleagues report in their September journal article that the advocacy model demonstrated its effectiveness in moving California health plans toward more dementia-capable practices. By the end of the Dementia CMC project, they write, several of the 10 participating health plans had made progress in implementing the following practices:

• Assessing plan members for cognitive impairment through an annual health risk assessment.
• Adopting a validated cognitive impairment screening tool.
• Developing a protocol for follow-up in the case of a positive cognitive impairment screen.
• Developing a protocol to assess the stress and needs of caregivers.
• Providing respite to caregivers of people living with dementia.
• Providing or arranging education for people living with dementia and their caregivers.
• Adopting a proactive tool to make referrals to Alzheimer’s community-based organizations for disease education and support.

CALLAHAN AND STONE EDITORIAL

Callahan and Stone suggest in their October editorial that the Dementia CMC project presented “a playbook for a compelling multi-faceted dementia care advocacy model that … clearly moved health care plans in the right direction.”

Yet, the two authors question whether health plans participating in the project moved far enough.

“One might argue that these seven features are well known to implementation scientists, with the notable exception of identifying and leveraging public policies in support of systems change,” the authors write about Dementia CMC’s advocacy model. “However, what is more surprising is the relatively small amount of change demanded of the health systems and yet the relatively modest levels of process improvement they achieved.”

Rather than a criticism of the study’s design or implementation, “this is the reality of our current priorities in providing quality of care for persons living with dementia,” clarify Callahan and Stone. They then pose several questions about the current state of dementia care:

• How can we move a wider range of health plans and providers in the right direction further and faster?
• Is a state-by-state coalition of disease-specific advocacy efforts the best approach or should we focus on Federal advocacy efforts?
• How do we engage a larger mix of long-term services and supports providers and consumer and worker advocates to ensure better care from initial referral and diagnosis to end of life care?
• What is the appropriate strategy for advocacy as we approach the mid-21st century with a burgeoning population of older adults?

Callahan and Stone suggest broadening the coalitions advocating for dementia-capable systems change.

“One might … conjecture that a more powerful coalition is needed to effect change, and the coalition will only become more powerful through amplifying the voice of consumers,” they write.

In addition, coalitions should focus their advocacy on a broader group of consumers, such as all vulnerable older adults, all dual-eligible older adults, or all Americans needing medical care and long-term services and supports.

“In this regard, we might follow an advocacy model more closely resembling the Americans with Disability Act,” they suggest, adding that future studies should assess the extent to which this type of multi-stakeholder advocacy effort ultimately affects health and quality of life outcomes for persons living with dementia and their care partners.

Read the original article.

Read the editorial.