Let’s talk about dementia to bring it out of the shadows

Justice Sandra Day O’Connor set a high bar. As the first woman on the Supreme Court, she remade our image of a powerful judge. Justice O’Connor was ahead of the curve again last week when she announced her diagnosis of early Alzheimer’s. She sets another example by taking this brave step and bringing this difficult disease out of the shadows.

As a doctor who treats dementia, I know how hard it is to talk about. As people slowly lose the ability to think, families and clinicians are often afraid to face these troubling changes.

When Alzheimer’s disease goes undiagnosed, which is the case for many of the 5 million people in the U.S. living with the disease, patients and families stumble, not understanding what’s happening. It’s easy for everyone to avert their gaze, brushing off early signs of dementia as “normal aging,” and leaving patients and families adrift without a plan.

We are starting to realize that this “benign neglect” is no longer OK. The Alzheimer’s Association published first of its kind guidelines this past summer calling on primary-care providers to more carefully evaluate the early signs of cognitive decline. This is a major step forward, since without engagement from primary care, dementia will continue to go unrecognized and undertreated.

People wonder why the signs of dementia are so easy to ignore. Widespread fear of dementia creates enormous incentives for everyone to pretend it’s not happening. And despite billions of dollars spent on research, we don’t yet have a disease-modifying treatment for Alzheimer’s.

People also ask how important is it really to make an early diagnosis, since we lack effective treatments. But actually, the benefits of an early diagnosis are many. With an early diagnosis, patients and families can understand and plan for the changes which are occurring. Physicians can take important steps, such as encouragement of early family support, counseling to facilitate a safe retirement from driving, and timely advance care planning while patients are still able to participate.

We truly can improve quality of life when we diagnose early-stage memory loss. We can stop harmful medications; encourage reductions in alcohol intake, which can worsen cognitive function; and order medical tests for reversible conditions, which can masquerade as dementia.

The example set this week by Justice O’Connor, and the recent guidelines released by the Alzheimer’s Association, set a path forward for us to start viewing dementia as a common, chronic disease that primary-care providers can identify and manage with improved training and support.

The role of the primary-care provider cannot be overstated. Many patients with early Alzheimer’s prefer to stay with a primary-care provider they know and trust, rather than switching to a new doctor to navigate this psychologically challenging disease. Policymakers also point to the shortage of neurologists and geriatricians to provide the care which the growing number of patients living with dementia will need. Primary-care providers can meet this challenge, but they need more training and better support.

Primary-care physicians like myself know we should be doing a better job with dementia. We need to overcome the denial which this disease can bring. With better outreach, we can help people understand that when they are worried about their memory, they should talk to their doctor, and we doctors need to learn to listen when they do.

Bringing dementia out of the shadows won’t be easy. We need improved educational programs and better resources for primary-care doctors, and improved systems in place to help patients and caregivers. When someone as respected as Justice O’Connor steps forward to disclose her dementia at an early stage, it should prompt us to step up with the courage we need to face this challenging disease.