Mobilizing Patient and Caregiver Third Parties to Increase Access to FDA-Approved Treatments for Alzheimer’s Patients

STATE OF PLAY

Alzheimer’s Disease not only robs people of their memories, but it can also change their personalities and turn them into someone angry and unrecognizable. Nearly half of Alzheimer’s patients suffer from symptoms referred to as “agitation.” These patients can display aggressive behavior such as verbal outbursts, physical violence, and difficulty with basic hygiene—situations that family caregivers are not equipped to manage. 

While the FDA has approved treatments that help manage these destructive symptoms, outdated rules put in place by the Centers for Medicare and Medicaid Services (CMS) restrict nursing homes' ability to administer these treatments, even when they are prescribed appropriately by a medical professional. 

To encourage CMS to reform this outdated system, Narrative leveraged the voices of patients, providers, advocates, and family members to raise awareness of Agitation in Alzheimer’s Disease and encourage Congress and regulators to expand access to FDA-approved treatments. 

ACTION

Message Development – Narrative developed key messaging spotlighting the firsthand stories of providers, patients, family members, and other caregivers to show the real-world harm that CMS rules are causing.  

Coordinating with Advocacy Groups – Our team worked closely with third-party organizations, such as Project PAUSE and the Alliance for Aging Research, that have a demonstrated history of advocacy on this topic. Working through these groups lent credibility to our efforts and helped us identify additional compelling voices.  

Publishing Op-eds - We’ve worked directly with providers, advocates, and family members of patients to author and place seven op-eds in national and local outlets that have been syndicated in over 35 papers across the country: 

• • MinnPost: Alzheimer’s patients lost in the system

    “They say Alzheimer’s patients die twice — first at diagnosis, then once they eventually pass. My father lived for almost 15 years. At the end, he had a few moments of clarity when he was calm enough to recognize me as his daughter. Absent a cure for the underlying disease, our health care system should provide patients with as many of those moments as the disease allows.”  

  • Kansas City Star: Alzheimer’s caregivers need updated drug rules to give families more time and peace

    “As an experienced physician who has spent years treating patients with neurodegenerative diseases in hospital, nursing home, and hospice settings, I have seen how a well-intended policy to limit the use of Food and Drug Administration-approved antipsychotic medications has made it much harder to care for these patients.”  

  • DC Journal - Alzheimer’s Takes Their Mind, Bureaucracy Takes Their Dignity

    “One of my patients who suffers from late-stage Alzheimer’s carries a baby doll wherever she goes. She cares for it as she would her child or grandchild, refusing the food she is served and instead feeding it to the doll. She has lost so much weight that we made the difficult decision to take the doll away at mealtimes. This throws her into a fit of rage and despair. She verbally abuses anyone around her. At times, she physically assaults them. This tragic but preventable situation is typical of my experience as a geriatric psychiatrist.”  

Filming an Emotional Video Spotlighting a Family Member and Provider – In partnership with Project PAUSE, we filmed and released a powerful video telling the story of how the daughter of an Alzheimer’s patient had to move her father between nursing homes and experience verbal abuse because he was denied FDA-approved treatments despite being prescribed by a medical professional   

Targeting Policymakers Through Digital Campaigns - To ensure our video and op-eds were delivered directly to key members of Congress, their staffs, and officials at CMS, we conducted a series of digital amplification campaigns that have generated more than 12 million ad impressions and received over 8,000 clicks. 

IMPACT

While we still have work to do, we are beginning to see progress. Project PAUSE has started an open dialogue with policymakers at CMS who have expressed openness to reform.