Hospital Impact: Primary care key to improving lives of dementia patients

headshot of Anthony Cirillo

The group Alzheimer’s Disease International recently released its World Alzheimer’s Report 2016. In a nutshell, the conclusion: If there is to be hope for earlier detection and helping people live well with the disease, primary care has to step up.

The report reiterated points we have heard before and on which I speak about continuously. Dementia, including Alzheimer’s, is a societal issue not just a medical issue. We must treat it holistically and integrate care across providers. Sadly, the system of care and payment in this country is not set up for that. Progress is not happening fast enough. (As I am writing this, news broke about providers urging the Centers for Medicare & Medicaid Services to slow down on its bundled payment initiatives.)

The best care for dementia in developed countries is limited to specialists--neurologists, psychiatrists and geriatricians. And once a person and his or her family caregiver leave that domain, well, they fall into a chasm. The report suggests a notion of task shifting in which tasks are delegated, say from a neurologist to a primary care physician.

The sheer number of people who will be affected by the disease demands that other providers become knowledgeable to manage it. And it’s not like young people are jumping on the “I want to be a geriatrician” bandwagon. They’re not. So, pardon an overused phrase, this will take a village.

The report notes that “when primary care physicians do take responsibility for dementia care, evidence suggests that the care has similar outcomes to that provided by specialists.” For the most part, dementia has been in the hands of the specialists, although there has a slow but mounting movement for primary care in assisted living, as noted by the Advisory Board.

There is no population health model for dementia, and case management has been poor. Even introducing a dementia navigator, something the United Kingdom has done, was panned in the report, which noted that “simply introducing a mental health liaison service, or a dementia specialist nurse, or a special dementia care unit will not suffice.”

For this to shift to a primary care focus, there must be a culture shift and intense education around what it means to be dementia friendly. More so, we must recognize that care partners may not just be other providers but banks, transportation services and other social supports that complement the PCP care while addressing the real-life needs of people when they are back living at home and in their community.

The Alzheimer’s Disease International report looked at how a shifted model would impact costs. In this model, diagnosis and initial support would come in a PCP setting, and more complex cases would be referred to specialists. End-of-life care discussions, family caregiver support and education about palliative care would all be vital components. While the U.S. costs were not analyzed, the report found that in Mexico, this model of care would cost $39 per person, per year; in South Korea $2,113. And if a move to generic drugs could be made, there would be an additional 40 percent cost reduction.

Sure, the U.S. cost structure is out of control, but it would seem costs could be greatly reduced in dementia if care was provided at the right time in the right setting.

I am on the board of a local health clinic, and at our annual retreat a few weeks ago, we talked about this. We were looking at the missing pieces to our care model and concluded that addressing the social determinants of care would enhance what we do tremendously.

Even CMS has introduced some experimental accountable care organizations that reward providers for forming stronger partnerships with entities in the community that can address these social determinants. It does not mean the provider has to now figure out how to offer these services or acquire the services. It is more about finding the right partners and recognizing these social determinants as important.

I would conclude by noting that the U.K. is far ahead of the U.S. in addressing the social determinants of health. It has dementia registries, which encourage and reward physicians for identifying those with dementia. Once identified, a care advocate and post-diagnostic support is provided. The U.K.’s Dementia Friends initiative has educated more than 1 million people about the disease, making them just a little more sensitive and in tune with the issues.

In our country, we are years ahead in the research for the cure, but we are miles behind in helping people with dementia and their family caregivers live well with the disease. And even when we know that we are dealing with a disease that has no cure, we are horrible about bringing up the topic of death and dying.

It’s all part of the conversation.

Anthony Cirillo is president of The Aging Experience. He helps organizations craft experiences and seize opportunities in the mature marketplace, and helps family caregivers thrive and individuals make educated aging decisions. A consultant and professional speaker, Anthony also is an executive board member of the Dementia Action Alliance.