How to Improve care for people living with dementia

It was the middle of the workday when my sister got the call. “We’re discharging your dad; you need to come get him.” My dad, who had advanced dementia, had been hospitalized for another medical condition. My sister, Sarah, pleaded with the hospital, “Can I come after 5 p.m.?  I can’t just drop everything and come get him.” Sarah was working full-time and raising two young daughters.  It wasn’t that simple to pick up and go. “No,” said the voice on the other end of the line. “We need the bed.”  Two hours later Sarah arrived to find dad in a wheelchair in the middle of a busy hospital corridor. He had soiled his clothes and was left sitting there by himself. Of course, this was devastating to my family, who witnessed a man who had been a prominent psychiatrist treated with so little respect and dignity.

I share this story not to criticize hospital staff who are understaffed and following orders from management.  I share this because this happened to my family — even though my dad was a medical doctor and my sister and I both worked in the health-care sector. And unfortunately, this is just one example of the frustrations we encountered while trying to help my Dad navigate complex health and long-term care systems during his journey with dementia. If I, a white, middle-class, well-educated woman couldn’t get him the care he deserved, what must it be like for those who may be nonwhite, low-income, or unable to speak English?  I shudder to consider.

My family’s experience is one of the key factors that motivates me to lead the Milken Institute Alliance to Improve Dementia Care. Through this Alliance, we seek to build a dementia-capable workforce and system to effectively identify people at risk for or living with dementia, tailor services to meet their needs and those of their caregivers, and ensure they get the right care at the right time.

Our health-care system is not set up to deliver person-centered services to people living with dementia and their caregivers. Rather, our traditional Medicare program is designed to reward volume over value — to discharge patients ASAP to make room for another paying patient — to order unnecessary tests, prescriptions, and procedures even if the patient cannot benefit from them.  

The growing prevalence of dementia creates an urgent need to reform care delivery and payment policies in Medicare. The Alliance released a new report, “Scaling Comprehensive Dementia-Care Models,” which outlines recommendations the Milken Institute developed in collaboration with leaders across industry, government, research, advocacy, philanthropy, community-based organizations, and health systems.

The report recommends widely testing the implementation of payment models for comprehensive dementia care in traditional Medicare, especially in underserved communities. This recommendation is consistent with the bipartisan Comprehensive Care for Alzheimer’s Act (S. 1125; H.R. 2517), which calls on the Center for Medicare & Medicaid Innovation (CMMI) to test an alternative payment methodology for dementia-care management.

The Alliance recommends the five following solutions:

• Integrate medical and long-term care services to support people with dementia and their caregivers.
• Expressly link equity measures to outcome measures to hold providers accountable for racial, ethnic, and geographic disparities.
• Expand training for all workers involved in dementia care. 
• Change how Medicare pays for dementia care in traditional Medicare.
• Pay community-based organizations for the services they provide to individuals living with dementia and their caregivers.

The fragmented nature of traditional fee-for-service Medicare presents multiple obstacles to delivering high-quality, coordinated, and comprehensive care to people diagnosed with Alzheimer’s disease and related dementias. No current payment structure pays for all of the needed elements of dementia care. CMMI should test an alternative payment model for dementia-care management. If implemented, the Alliance to Improve Dementia Care believes it can improve quality of life, better support caregivers, delay transitions from home to nursing homes, and reduce the total cost of care.

As new potentially disease-modifying therapies are created and approved by Medicare, it is more urgent than ever that beneficiaries have access to comprehensive dementia-care models to ensure they get care that is personalized, appropriate, and effective. These models have essential core elements such as continuous monitoring and assessment, treatment of related conditions, and caregiver support. They provide medical, neuropsychological, and social services to individuals across stages of their dementia care journey. These value-based models can help improve outcomes and lower costs by helping patients and their caregivers more seamlessly navigate their care with enhanced coordination among the many providers involved in the care of someone living with dementia. I urge Congress and the Biden administration to act quickly to change the way Medicare pays for care so that those living with dementia get the respect, dignity, and high-quality care they deserve. In recognition of Alzheimer’s & Brain Awareness Month, this one’s for you, Dad.

Nora Super is executive director of the Milken Institute Alliance to Improve Dementia Care