Dementia crisis hits hard in Michigan: How one group is trying to ease burden

Michigan is at a crisis point, according to a new report issued Wednesday by the Michigan Dementia Coalition. 

Dementia care will cost as much as $1.42 billion this year alone to Medicaid in Michigan for people age 65 and older. That number is likely to rise to $1.72 billion annually within six years, as more people are diagnosed with Alzheimer's disease and other forms of dementia, according to the coalition's Roadmap for creating a Dementia Capable Michigan report.

"Every sector of our state is affected by this challenge," wrote Gov. Gretchen Whitmer in a letter released Wednesday as part of the report. "More than half a million Michigan family members are caring for a loved one with dementia, and they bear the greatest responsibility. But this impact is also felt by our employers, our healthcare systems, our state resources and economy, and every community in the state."

The report paints a worrisome picture, showing the staggering costs associated with caring for Michiganders with dementia:

• $11,000 is the annual out-of-pocket cost for health care and long-term care for a person on Medicare with dementia — nearly twice the out-of-pocket costs of those caring for an adult without dementia.
• $321,780 was the total lifetime cost (in 2015 dollars) of caring for a person with dementia from the time of diagnosis.
• 517,000 people are caring for family members with dementia. They provide an estimated 589 million hours of unpaid care annually to people living with dementia. The value of this unpaid care is over $7 billion.

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“Alzheimer’s is the most expensive disease in the United States,” said Jennifer Lepard, president and CEO of the Alzheimer’s Association, Greater Michigan Chapter and co-chair of the Michigan Dementia Coalition. “Given the enormous burden Alzheimer’s has on individuals living with the disease, their families and the country as a whole — it must remain a public health priority for Michigan and for our nation.”

An estimated 190,000 Michiganders age 65 and older have Alzheimer’s dementia, a number that is expected to swell to 220,000 people by 2025. While those numbers are rising, it's an underestimate of the larger problem because it doesn't include people who are younger than 65 with Alzheimer's disease or those who have other forms of dementia, such as vascular dementia, Lewy body dementia, frontotemporal dementia, and Huntington’s disease.  

“Two-thirds of adults personally know someone who has had Alzheimer’s disease, dementia, or another condition causing cognitive decline,” said Lisa Dedden Cooper, manager of advocacy for AARP Michigan and co-chair of the Michigan Dementia Coalition.

And although the data are grim, the coalition — made up of 65 organizations and 120 individuals, including AARP Michigan, the Alzheimer’s Association Michigan chapters, researchers at Michigan State University, the University of Michigan and Wayne State University, and the Area Agency on Aging 1B —  is working on strategies to help the state better manage the rising number of people with dementia, and make their lives and the lives of their caregivers more fulfilling. 

Among its goals:

• Increase access to training, education and support for caregivers, health care and service providers
• Reduce turnover and improve job satisfaction among those who work in health care and those who provide services to dementia patients
• Promote early detection and diagnosis and expand opportunities for patients to take part in clinical research
• Meet the unmet need and prepare for increased future demand for services for people living with dementia
• Address the need for more affordable, reliable transportation services for people with dementia
• Identify policy and regulatory changes to help prevent abuse and financial exploitation of people with dementia

It's also trying to raise awareness about dementia and the care-giving challenges, building partnerships to strengthen services available to patients, and enacting policies that will make a difference for families and the state's economy.

To read the full report, go to: https://www.midementiacoalition.org/roadmap

Contact Kristen Jordan Shamus: 313-222-5997 or kshamus@freepress.com. Follow her on Twitter @kristenshamus.