Both of us lost our dads to Alzheimer’s disease, and both of our families carried extra burdens from dementia because the diagnoses were delayed. Diane’s family wondered if her dad’s personality changes were due to early retirement and feeling a loss of purpose. Nora’s family was puzzled by her dad’s trouble finding words and getting lost easily.
It took five years for Diane’s family to realize her dad’s behavior was not “normal aging” and by then he was past the early stage of Alzheimer’s disease. For Nora, it wasn’t until her dad was admitted to a hospital that he received a diagnosis, several years after showing some symptoms.
Their diagnoses helped our families understand the angry outbursts or explain the confusion. Equally important, they were an essential step for beginning to marshal the energy to navigate the fragmented care system for people with dementia.
What our families endured happens to far too many others.
Changes to the brain can begin 10 to 20 years before signs and symptoms of cognitive impairment appear. This makes it essential to capture a baseline of brain health well in advance so it’s possible to note changes over time.
We believe that screening for cognitive impairment should be part of the annual check-up for adults age 65 and older. We want older adults and their families to expect cognitive screening in the same way they understand the need for other screening tests for individuals without symptoms, such as annual mammograms or colonoscopy starting at age 45.
While this is the right thing to do for older Americans, it will require some important changes in the health care workforce, as described in “Building Workforce Capacity to Improve Detection and Diagnosis of Dementia,” a recent report from the Milken Institute’s Alliance to Improve Dementia Care, which we lead.
Creating the expectation of an annual cognitive assessment can go a long way in overcoming stigma associated with dementia — the false assumptions about a person’s mental health and functional abilities. These misperceptions often create barriers for physicians and their patients to communicate openly about memory concerns.
In fact, fewer than half of Medicare enrollees whose medical records show a diagnosis of some type of dementia report being told of their diagnosis by their doctor. And anywhere between 40% and 60% of adults with probable dementia had not been given that diagnosis.
Many doctors say they are reluctant to diagnose dementia, or lack confidence in doing it. They know there are limited treatment options, and there is currently no drug that will slow or cure Alzheimer’s disease. Older adults fear that a diagnosis could lead to a lost job or the ability to drive, so they often don’t seek a diagnosis or report symptoms.
But a growing body of evidence shows that certain positive lifestyle practices can reduce the risk of dementia and improve brain health. These interventions include being physically active; getting enough sleep; refraining from smoking and excessive alcohol consumption; having a strong social network; and managing blood pressure, depression, diabetes, and weight.
In our work, we have met many people who made changes like these and experienced improved brain health even after being diagnosed with dementia.
To help more people get baseline cognitive exams or be screened for cognitive impairment, the “Building Workforce Capacity” report recommends that clinical workflows for primary care teams use widely recognized training materials and toolkits. Medicare’s annual wellness visit covers cognitive screening, but fewer than one-third of beneficiaries report having received a structured cognitive assessment. To improve that number, Medicare should require clinicians to use a structured cognitive screening tool during the annual wellness visit rather than relying on responses to questions or patients’ self-reported concerns about memory.
Structured cognitive screening tests, like the popular Mini-Cog assessment, can generally be administered in under five minutes. They check a person’s ability to recall three unrelated words and draw the numbers and arms of a clock at a specific time. The results can trigger further evaluation if needed. For example, clinicians can conduct tests that might reveal non-dementia causes for cognitive impairment, such as hearing loss or sleep apnea, or lead to a diagnosis of mild cognitive impairment or some form of dementia.
Earlier detection and diagnosis make it possible for individuals and their family members to take steps to improve brain health, manage symptoms, and capture their care preferences. It was fortunate that our dads either had an advance care directive or shared their care desires long before their declines, so our families knew their personal wishes. Many families, however, don’t have this knowledge and it’s too late to learn of their loved one’s preferences if dementia is diagnosed in later stages.
Improving timely detection and diagnosis also increases the eligible pool of people able to participate in clinical research trials and can also help determine eligibility for new disease-modifying drug treatments on the near horizon, most of which will benefit individuals at the earlier stages of the disease.
Both of us wish our dads’ dementia had been detected earlier. And though it’s too late for us, it’s not too late for the millions of individuals with dementia and their families who will hopefully start the care journey together with a timely diagnosis.
Nora Super is the executive director of the Milken Institute’s Alliance to Improve Dementia Care and senior director of the Center for the Future of Aging. She served as the executive director of the White House Conference on Aging under President Obama. Diane Ty is the director of the Milken Institute’s Alliance to Improve Dementia Care.