Families need support for bill to aid dementia caregivers

If there is one thing we’ve learned in the past two years, it’s that we need help. Just because I can read doesn’t mean I can effectively teach my children. Just because I can drive/use a computer/make dinner doesn’t mean I can tune up my car/program updates/grow food for my family. Just because I believe in science/vaccines/alternative medicine doesn’t mean I have the skills to analyze/develop/test the hypotheses without training or the help of others.

COVID-19 has sent us to our safe corners, understandably afraid of normal human interactions that could spread the virus, yet it has left us without the key resources we need to cope, grow, and thrive. As a result, we are frustrated. What can we do, as people — citizens, congregants and leaders — to restore a culture and network of helping? It’s a question to ponder.

Our family had a head start on this insight when our father developed dementia. We could not make the diagnosis ourselves, as comparing each other’s anecdotal insights just led to uncertainty, wishful thinking and bad feelings.

Once he was diagnosed with Alzheimer’s Disease, we still could not care for him alone. We needed to learn about best practices and then practice saying and doing things that were counterintuitive to the way we thought things should be. We needed lawyers to protect him from both his errors in judgment and our naivety about those who would take advantage of him. We needed medical professionals that understood he would/could not follow instructions or care for himself, We needed care professionals who had more patience than we did, who could talk us off a limb, and who could show us tricks to caring for him humanely. Trying to coordinate his care was frustrating and often futile.

In times of stress, it is hard to think creatively about better ways to do things. The Alzheimer’s Association, however, has developed a bipartisan alternative to the Medicare fee-for-service model that addresses challenges families such as mine face. Called the Comprehensive Care for Alzheimer’s Act (S. 1125/H.R. 2517), it would ask the Center for Medicare and Medicaid Innovation (CMMI) to test a different payment structure for dementia care management. Introduced by Sens. Debbie Stabenow (D-Mich.) and Shelley Moore Capito (R-W. Va.) in the Senate and Reps. Brian Higgins (D-N.Y.), Darin LaHood (R-I11.), Paul Tonko (D-N.Y.), and Brett Guthrie (R-Ky.) in the House of Representatives, the Comprehensive Care for Alzheimer’s Act has the potential to streamline today’s complicated health care maze for people living with dementia and their caregivers.

I call on our elected officials, especially Representative Madeleine Dean (PA 4) and Senators Bob Casey and Pat Toomey, to recognize the timeliness and opportunity of this bill, and to co sponsor and champion it to passage. Families need your help.