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Voices & Opinion

POV: There Are Ways to Make Life Easier for Patients with Alzheimer’s Disease and Their Caregivers

We need better dementia care coordination programs

When Oscar-winning actor Gene Hackman and his wife were found deceased in their New Mexico home in February, questions swirled about the mysterious nature of their passing. What we would later learn about their final days—particularly Hackman’s—is worse than we could have imagined. 

Officials believe that Hackman, who had advanced Alzheimer’s disease, had wandered around his home, alone, for a harrowing week after his wife died suddenly of hantavirus.

Even a man of Hackman’s fame and wealth can fall through the cracks of care after a diagnosis of dementia. It seems that the couple lacked services and care to support them both, which resulted in tragic consequences. This lack of care and support is not uncommon for the over 7 million Americans diagnosed with Alzheimer’s disease and related dementias (ADRD) and their 11 million caregivers.

These patients, and those who care for them, must coordinate care between numerous specialists, including neurologists, primary care physicians, and psychiatrists. They likely need to set up brain scans and lumbar punctures. They also have to carefully keep track of their finances, understand complicated health insurance options, and often have to apply for assistance programs, as many ADRD services and supports are expensive.

Coordinating support services (home health care, transportation assistance, home-delivered meals) is yet another stressor. Many of these programs have wait-lists that stretch several hundreds of thousands of people.

All of this happens while a patient is trying to cope with their “new normal.” An ADRD diagnosis can be isolating, stigmatizing, and lonely.

There are simple ways to make things easier for people with ADRD and their caregivers. State laws and a new model from the Centers for Medicare & Medicaid Services (CMS) aim to do just that for dual-eligible beneficiaries (those covered by both Medicare and Medicaid) suffering from ADRD.

Care coordination for persons living with ADRD is fragmented, stressful, and costly

In a survey of more than 1,500 unpaid ADRD caregivers released last year, 70 percent said that navigating dementia care is stressful. Two-thirds said it is somewhat or very difficult to find support for themselves. And 97 percent said that dementia care navigation services would be helpful.

The survey also captured healthcare workers’ opinions: 60 percent of them said that the system doesn’t work for people with ADRD and their caregivers.

But people living with ADRD and their caregivers know what they need to better coordinate their care.

Surveyed caregivers say that access to a 24/7 helpline, better coordination between different specialists, and improved education about diagnosis and disease progression would go a long way. Additionally, they note that assistance with insurance and navigating healthcare systems would be useful.

Last, but not least, caregivers say they would benefit from support groups, respite services, and more resources to alleviate some of the financial burden associated with ADRD.

Studies show that coordinated dementia care can lead to lower healthcare utilization, which leads to lower expenditures. These studies also demonstrate a link between coordinated dementia care and decreased depression for both ADRD patients and caregivers. ADRD patients experience higher quality of life with more coordinated care, and caregivers say their overall burden is reduced.

Economic analyses suggest that coordinated dementia care could result in $21 billion in cost savings over 10 years for the federal government.

State and federal mechanisms could bring needed change

Of the 8 million adults aged 65 and older who are dually eligible for Medicare and Medicaid, about 20 percent have ADRD.

Poor care coordination and a lack of integration between Medicare and Medicaid can lead to negative health outcomes for this population, including high rates of preventable hospitalizations, 30-day readmission, and avoidable emergency department visits.

In response, some states have introduced legislation that requires certain health plans for dual-eligible beneficiaries with ADRD to include dementia care coordination as a service benefit.

A new bill in Massachusetts would mandate this, as well as create a director of dementia care and coordination role in state government.

Looking beyond the states, the federal CMS has created the Guiding an Improved Dementia Experience (GUIDE) Model that prioritizes—and incentivizes—holistic, coordinated, effective dementia care.

GUIDE requires that participating providers deliver a set of coordinated dementia services, including 24/7 access to a care team member, assignment to a care navigator to coordinate services and provide guidance, and education and support for caregivers. Additionally, providers must offer some level of respite care for caregivers.

Participating Medicare Part B–enrolled providers are then reimbursed with a monthly, geographically adjusted base payment per beneficiary (instead of payment per service). CMS pays more for participating providers who meet or exceed certain performance metrics and pays less for those that fail.

CMS will also pay more for organizations serving beneficiaries in underserved communities. Underserved groups, including Black and Hispanic Americans, experience higher rates of ADRD than their white counterparts. Data also suggests that rural communities experience higher ADRD mortality rates than urban areas.

GUIDE could revolutionize care for ADRD patients. But the entry point to GUIDE and coordinated dementia care is an ADRD diagnosis—and we are far from succeeding in that area. Estimates vary, but up to 85 percent of people with ADRD never receive a formal diagnosis. We should applaud CMS’ GUIDE Model, but we should not rest until we improve diagnosis, too.

GUIDE should make people’s lives easier, and it should incentivize our healthcare and social services systems to deliver the holistic, multidisciplinary care that ADRD patients need and deserve. It should also help caregivers—most of whom are unpaid and doggedly caring for their loved ones at their own expense—feel more supported, better equipped, and heard.

Katherine O’Malley is a policy analyst at the BU School of Public Health and the Partnered Evidence-based Policy Resource Center. She is also the chair of the Greater Boston Walk to End Alzheimer’s. She can be reached at keomall@bu.edu.

“POV” is an opinion page that provides timely commentaries from students, faculty, and staff on a variety of issues: on-campus, local, state, national, or international. Anyone interested in submitting a piece, which should be about 700 words long, should contact today@bu.edu. BU Today reserves the right to reject or edit submissions. The views expressed are solely those of the author and are not intended to represent the views of Boston University.