Each year on the summer solstice – the day with the most light – the Alzheimer’s Association‘s helps outshine the darkness of Alzheimer’s disease with “The Longest Day®” campaign. The day is a global call to action to end Alzheimer’s and other forms of dementia. At the Alliance, Alzheimer’s disease has always been close to our work and hearts, and this day is important to us.
Alzheimer’s disease is an irreversible, degenerative brain condition that results in death—either directly from the disease itself, or from a related infection or other complication. Alzheimer’s first destroys memory and thinking skills and progresses to an inability to carry out even the simplest of daily tasks such as washing oneself or going to the bathroom. Mood and emotional changes – known as neuropsychiatric symptoms or NPS – such as depression, anxiety, agitation, and psychosis commonly co-occur in people with Alzheimer’s. In late-stage Alzheimer’s, people living with the disease can no longer walk, eat, talk, or swallow.
In 2007, the Alliance started ACT-AD (Accelerate Cures/Treatments for All Dementias) to bring together industry, advocacy groups, key government health agencies, and researchers to engage with the FDA on themes and challenges in Alzheimer’s clinical development. Our initiative emphasizes the urgency of developing effective treatments and gaining public and government recognition of dementia as a serious health issue. Every year the FDA and ACT-AD convene a roundtable meeting to explore the current therapeutic and research landscape for Alzheimer’s disease and related dementias. The 17th Annual FDA/ACT-AD Allies meeting will be held on Thursday, November 7th, in Washington, DC.
Understandably, much of the public focus on Alzheimer’s disease is on addressing memory loss and finding a cure. However, neuropsychiatric symptoms (NPS) that lead to mood and emotional changes are the symptoms that almost no one talks about, but they are common in Alzheimer’s disease and other dementias, Parkinson’s disease, multiple sclerosis; and brain tumors, infections, and injuries.
Because these symptoms are rarely talked about, the Alliance released two films in order to raise awareness of these symptoms as medical conditions:
- Shake the Stigma of Neuropsychiatric Symptoms, winner of a Gold Telly Award
- The Other Symptoms of Alzheimer’s Disease
Building on these films, the Alliance also released Expert Conversations of Neuropsychiatric Symptoms of Alzheimer’s, featuring conversations with a clinician, family caregivers, and patient advocates.
To address treatment access barriers for individuals with NPS, the Alliance and the American Society of Consultant Pharmacists (ASCP) created Project PAUSE (Psychoactive Appropriate Use for Safety and Effectiveness). This project aims to educate policymakers and the public on effective solutions for improving clinical care in long-term care settings by advocating for streamlined, clinical surveyor training, improved Medicare quality measures to appropriately determine antipsychotic drug use in long-term care settings, and other solutions aimed at improving the diagnosis and management of NPS in dementia.
In a powerful op-ed published in STAT, “Outdated Medicare rules prevent some dementia patients from getting the medications they need,” founder and director of the Integrated Memory Care practice at Emory University, Carolyn Clevenger, NP, DNP, advocates for scrapping Medicare policies that make it more difficult for providers to prescribe FDA-approved medications for neuropsychiatric symptoms of Alzheimer’s. We are fortunate that Carolyn also generously lends us her expertise with her service on the Alliance’s Research Advisory Council and participated in the creation of our educational films
We deeply appreciate our partnerships with caregiving groups, including National Alliance for Caregiving and Caregiver Action Network, and all who support those affected by Alzheimer’s. To any of you currently facing this disease, we see you, we appreciate you, and we stand with you on The Longest Day.
Spread the word about The Longest Day on social media and shine a light on the fight against Alzheimer’s by using the hashtags #ENDALZ and #TheLongestDay.
