Breaking the silence on dementia: 3 things PCPs can do to help

April 11 2023

According to Linus Health’s recent report, Patient Voices on Alzheimer’s and Other Dementias, unspoken concerns among older adults about cognitive health are widespread. In healthcare settings, lack of discussion on this important topic can contribute to a prevalent issue delayed diagnosis and treatment of cognitive disorders, like dementia.

Dementia is definitely on the minds of older adults, with 81% of the 1,000 surveyed for the report indicating at least some concern that they may one day develop Alzheimer’s or another form of dementia. Unfortunately, while older adults are worried about their cognitive health, most rarely bring up the topic with their primary care provider (PCP): even though the majority see their PCP an average of three times a year, only 12% say they regularly discuss cognitive healthcare with their PCP. In fact, when asked how often they bring up questions or concerns about cognitive health with a PCP during visits, 68% report that they rarely or never do.

The result can be a delayed diagnosis of Alzheimer’s or another dementia, which may have serious consequences. The National Institute of Health report entitled Missed and Delayed Diagnosis of Dementia in Primary Care: Prevalence and Contributing Factors states that “delayed dementia diagnosis leads to lost opportunities for treatment and increases patient and caregiver burden.” On the other hand, early diagnosis means the opportunity to possibly slow disease progression through an expanding set of lifestyle-based changes, as well as to prepare for future care needs and access clinical trials. In addition, emerging pharmaceutical treatments like Leqembi target early disease, meaning that early diagnosis is becoming even more critical.

Three things PCPS can do to help break the silence

According to the Alzheimer’s Association’s 2023 Alzheimer’s Disease Facts and Figures report, PCPs participating in focus groups said they held back from talking to patients about cognitive health due to a variety of factors, including lack of treatment options and lack of available specialists and services. But the landscape of treatment options is now evolving and PCPs have the opportunity to make a significant difference by breaking the silence with their patients about cognitive health. Here are a few things PCPs can do to start bringing brain health into the standard of care:

  1. Learn more about how today’s older adults feel about cognitive impairment, early detection, and dementia overall. Refer to Patient Voices on Alzheimer’s and Other Dementias Report to gain further insight on their perspectives on prevention, detection, and intervention.
  2. Normalize talking about cognitive health by adding related question(s) to your routine clinical interviews for older adults. This change can be challenging given the pressures on PCPs’ time, but new technology like digital cognitive assessments and questionnaires can help.
  3. Be prepared for delicate conversations. For PCPs with less experience with mild cognitive impairment, it can be helpful to brush up on best practices for communicating this diagnosis with patients and their circle of care. Building a framework for the discussion in advance can help build confidence when the time comes.

The importance of proactive cognitive care

The 2023 Alzheimer’s Disease Facts and Figures report goes on to say, “A collective breakdown in communication about cognitive issues at any point in the patient journey is detrimental to care, especially in an era when treatments that alter the underlying biology of Alzheimer’s disease could change the course of the disease if started early enough.” Proactive conversations about cognitive health in the primary care setting can not only help connect concerns about dementia with support and information, but can also change outcomes for patients. PCPs, however, need additional resources to be able to expand cognitive healthcare during routine visits.

This survey identified trends within dementia prevention and care that have a wide variety of possible implications for providers, patients, caregivers, and the healthcare system. To learn more about our findings, download the Patient Voices on Alzheimer’s and Other Dementias Report.