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Large Scale Impact Needed for Communities to Prepare for Coming Alzheimer's Epidemic

ACT on Alzheimer’s is preparing Minnesota for the budgetary, social, and personal impacts of the disease

The numbers can’t be ignored: one in eight people over 65 have Alzheimer’s and nearly 50 percent of people over 85 have the disease. With the coming age wave, Alzheimer’s will reach epidemic proportions–125,000 Minnesotans are expected to have the disease by 2025.

ACT on Alzheimer's Community Leadership GroupPeople are joining forces through the state-wide collaboration ACT on Alzheimer’s, formerly Prepare Minnesota for Alzheimer’s, to prepare Minnesota for the budgetary, social, and personal impacts of Alzheimer’s disease and related dementias.

The ACT on Alzheimer’s coalition took root following the January 2011 report released by the state-mandated workgroup that identified the future needs of Minnesota with respect to Alzheimer’s and recommendations on how to address those needs.

“People from the workgroup were concerned that nothing had changed,” said Olivia Mastry, who facilitated the Alzheimer’s workgroup. “We asked, ‘What can we do to make the recommendations a reality?’”

Collective impact

To achieve the system-wide change described in the report’s 50 recommendations, the state needed a comprehensive approach. ACT on Alzheimer’s is using the collective impact process to provide a disciplined, high performing approach to achieving large-scale social impact. It aligns nonprofits, businesses, and government organizations around established common goals and shared measures, in order to move beyond the isolated impacts each would have working on separate goals.1

Over 150 stakeholders are working on these five shared goals, each with its own leadership group, intended to drive change:

  • Increase early detection of Alzheimer’s disease and improve ongoing care and support
  • Sustain caregivers information, resources, and in-person support
  • Equip communities to be “dementia capable” so that they can support their residents who are touched by the disease
  • Raise awareness about Alzheimer’s by engaging communities throughout Minnesota
  • Identify and invest in promising approaches that bend the cost curve for Alzheimer’s and related dementias

ACT on Alzheimer’s participants each identified what they were already working on that aligned with the goals. The group determined what it could do in the first 18 to 24 months and defined a set of success measures across the five goals through 2013.

“We didn’t want to ask everyone to do a lot more, we just wanted to organize the work that was already happening, “Mastry explained. “We zoned in on key areas to move the dial on the issue.”

Early identification

Early identification of Alzheimer’s has a dramatic impact on quality of life, not just medical treatment and symptom management. Early diagnosis allows individuals and their families to plan for the future. It can help prevent big catastrophes like car accidents, financial disaster, people who are lost and wandering. Identifying the disease early can cut unnecessary emergency room visits and unnecessary hospital visits. Having a medical diagnosis also opens the door to a number of resources that might not be available otherwise.

Literature suggests that only 50 percent of providers can recognize Alzheimer’s when someone comes into a doctor’s office and complains of memory problems. With no standardized approach for early identification, ACT on Alzheimer’s created a practice algorithm that supports screening, early diagnosis and intervention, and quality care consistent with recommended practices.

“Our bold concept is not to wait until a patient comes in with a memory problem and then give them a screening test,” said Michael H. Rosenbloom, MD, clinical director, Center for Dementia and Alzheimer’s Care, HealthPartners.

ACT on Alzheimer’s is trying to get clinics to use asymptomatic screening as a best practice, starting with clinics in the Twin Cities region. The leadership group also has developed Health Care Home certification requirements and dementia-specific training for inclusion in curricula for health care providers and caregivers.

Bending the cost curve

The direct and indirect costs of Alzheimer’s and other dementias including Medicare and Medicaid costs and the indirect cost to business for employees who are caregivers of people with Alzheimer’s are estimated at more than $148 billion annually in the U.S.

Minnesota’s Medicaid program pays for the long-term care needs of those who cannot pay for their own care. Growth in the senior population and growth in both health care and long-term care services (including nursing homes and disability services) accounted for approximately 69 percent of the increase in Minnesota’s Medicaid costs in recent years. Together, they are one of the major causes of the state’s continuing budget deficits.

ACT on Alzheimer’s is looking at how to bend down the cost curve by quantifying the direct and indirect cost of dementia in an economic model, and by identifying interventions that show a return on investment.

Among the evidence based best practices currently available, the coalition identified two promising interventions for Alzheimer’s. First, caregiver support has been shown to extend the time a person with Alzheimer’s can be cared for at home before being admitted to a nursing home. The Mittelman model showed a delay of nursing home admission by six months.2 Second is the transitional care model for at-risk hospitalized elders researched by the University of Pennsylvania. Using the model is expected to decrease readmissions to hospitals and lengthen the time from hospital discharge to return.

“Arming caregivers with information and support networks is a vital step toward reducing the human cost of an Alzheimer’s diagnosis,” commented Lt. Governor Yvonne Prettner Solon, who is a former caregiver and the Honorary Chair of ACT on Alzheimer’s. “Successful, informed, and supported caregivers are happier, more fulfilled, and can help keep loved ones healthier and in their homes longer—something that often keeps families happier and health care costs down for family and state budgets.” The economic model is expected to show savings through these interventions—savings for insurance companies, Medicare, Medical Assistance, and personal resources.

“When we finalize this work in early 2013, it will have value not only for the state, but also for others who can implement interventions, like health systems that are trying to manage costs within bundled payments and manage avoidable hospital readmission rates,” said Patti Cullen, Care Providers of Minnesota president and CEO.

Community

All of the work of ACT on Alzheimer’s is intertwined and will be delivered and embedded across the state through a community engagement process. One of its long-range goals is to have communities act on a more wide-scale basis to embed system changes that foster community readiness for dementia.

Stratis Health, in conjunction with one of the coalition leadership groups, is spearheading the development of the Dementia Capable Community Toolkit—a comprehensive toolkit that includes information and resources on how communities can prepare for needs related to dementia, from early identification of the disease to community awareness and readiness. The toolkit provides a structured process to foster convening leaders and influencers, assessing of strengths and gaps, identifying and planning community goals, and acting together.

Currently, five community teams—representing geographic and faith communities—have partnered with ACT on Alzheimer’s to pilot the process.

A different process, different future for dementia

The complexity of the issues surrounding Alzheimer’s and related dementias requires the wide-reaching approach of the collective impact model to problem solve to achieve large-scale progress. The magnitude of involvement and cooperation through this process is greater than any of the 150 stakeholders has previously experienced.

“It feels like I’m in the middle of a renaissance or revolution,” said Rosenbloom. “It seems like we are changing how we look at the disease.”

1. Channeling Change: Making Collective Impact Work, Stanford Social Innovation Review, January 2012.
2. Mittelman, M.S., Ferris, S.H., Shulman, E., Steinberg, G. & Levin, B. (1996). A family intervention to delay nursing home placement of patients with Alzheimer disease. Journal of the American Medical Association, 276, 1725-1731.