Kristen Laeace: Dementia care gets personal at legislature

One by one, the members of the House Public Health Committee voted aye to support a program of Dementia Care Specialists in conjunction with the Indiana Division of Aging and the Indiana Area Agencies on Aging (AAAs).

Rep. Greg Porter, the author of HB 1422, had talked about the impact of Alzheimer’s and dementia on Indiana. About 110,000 Hoosiers are living with the disease and are supported by 216,000 unpaid family caregivers. And there is a $1 billion annual price tag for Indiana Medicaid, with a 21.3% hospital readmission rate driving part of those costs.

Many of us know that Porter has been one of those passionate, unpaid family caregivers for his own mother. It is what has inspired him to champion legislation to improve Indiana’s response to and support for persons living with Alzheimer’s and dementia, most recently requiring the Division of Aging to create and annually update a Dementia Strategic Plan. As a member of the Public Health Committee, we know the depth of love and commitment behind his aye vote.

Then, something else started to happen. As the voting continued, one legislator voted aye in honor of her grandmother “Peaches,” whom she loved very much. Another voted aye in honor of his grandmother “GeeGee,” and another in honor of her grandmother “Bumm.” And yet another in honor of her own mother, whom the grandchildren call “Nana.”

In all, five of the 13 committee members had just shared their own lived experience of Alzheimer’s and dementia, almost 40% if you do the math.

But here’s the thing. Other than clinical and supportive services the state pays for Medicaid recipients, our Indiana state budget provides no other community supports specific to Alzheimer’s and dementia. What about the rest of us, the majority of us, who will have the good fortune to never be poor enough to qualify for Medicaid? If the Public Health Committee members are a representative sample, what’s out there to help the 40% of us who will have a challenging lived experience with Alzheimer’s and dementia?

HB 1422 is still alive in the Indiana General Assembly, but its modest $1.5 million annual price tag was stripped from the bill before it left the House and was not included in the House-passed budget.

Indiana AAAs are already carrying a significant burden of providing community supports.

  • They administer Dementia Friends and help cities and towns work toward becoming a “Dementia Friendly Community.”
  • They are an integral partner, and provide matching funds for, Indiana University’s successful Alzheimer’s Disease Program Initiative grant, which reduces caregiver burden and increases caregivers’ skills to better serve their loved ones.
  • They partner with Indiana’s Geriatric Workforce Enhancement Program centers, linking clinical settings with the vital home and community-based supports their patients need.
  • They conduct their own expert trainings for memory care professionals. And most importantly, the provide direct supports for people living with Alzheimer’s and dementia and their family caregivers.

We are excited for the promise of HB 1422 and the opportunities it can create in cities and towns across Indiana. But we need more help. We can’t do it all by ourselves. We need our state budget to look beyond Medicaid and provide communitywide support for Alzheimer’s and dementia, prioritizing funding for community-based dementia care specialists in Indiana’s AAA network.

Kristen Laeace is CEO of the Indiana Association of Area Agencies on Aging. This commentary previously appeared at indianacapitalchronicle.com. Send comments to [email protected].