Chairman’s Blog: Introducing Project PAUSE

James “Jim” G. Scott, Chair, Alliance for Aging Research Board of Directors.

In May, I used this space to talk with you about the terrible toll that the coronavirus pandemic has taken on the residents and staff of long-term care facilities. That damage has been almost immeasurable; we at the Alliance for Aging Research continue to work to ensure that nursing home reform will be prompt and thorough in the wake of this catastrophic event.

This month, I want to update you on a different sort of challenge, but one that also threatens the health and safety of nursing home residents. Psychotropic drugs have been in use since the 1950s, but even seven decades after their introduction, there are differing approaches to their use among aging adults. Today, there is a large unmet medical need in long-term care settings for the diagnosis and management of behavioral and neuropsychiatric symptoms (NPS) in dementia, leaving many residents to suffer with untreated symptoms. In response to misuse of these drugs a chemical restraints that deprived patients of a more meaningful quality of life, the Centers for Medicare & Medicaid Services (CMS) regulated the inappropriate use of psychotropics. While misuses of psychotropic drugs remain a major concern of policymakers, there is specific and compelling evidence that psychotropics are underutilized in treating dementia and it is time for CMS to re-evaluate its regulations

Last summer, the American Association for Geriatric Psychiatry, working with the American Psychiatric Association, conducted a survey of its members. More than eight out of 10 respondents said they “reported experiencing barriers to prescribing psychotropics appropriately for their patients due to policies that penalize such prescribing.” Almost two-thirds said that patients became “destabilized, requiring more acute levels of care as a result of the failure to provide appropriate psychotropic medications due to policies limiting their use.” More than half of the respondents said that a long-term facility staff member had “requested that they alter their prescribing practices so the facility” could receive a higher quality rating score.

For residents of nursing homes and those who care for them, this is not a trivial matter. Failure to appropriately treat neuropsychiatric symptoms can exacerbate problems leading to confusion, anxiety around sleep, agitation and aggression due to hallucinations and delusions, worsening depression, feelings of apathy, and other forms of psychosis. Additionally, there are no disease-modifying treatments for many of these symptoms and for dementia, so the focus for these patients must be on decreasing suffering and improving quality of life.

CMS has not been indifferent to these difficulties, and this past year issued clarifying rules about the use of psychotropics, eliminating bureaucratic hurdles to extending their use beyond 14 days. While this is commendable, there is much more that could be done to ensure that providers and nursing homes are working within a structure that allows and even facilitates appropriate use of psychotropics, but still penalizes their overuse.

To that end, the Alliance and the American Society of Consultant Pharmacists (ASCP) have co-convened Project PAUSE (Psychoactive Appropriate Use for Safety and Effectiveness), a coalition of national patient and professional organizations collectively advocating on clinical regulatory and legislative issues in long-term care. The goal of Project PAUSE is to achieve a paradigm shift in dementia care and the care of people with NPS. Incremental change is not enough.

We feel a sense of urgency to improve the diagnosis and management of NPS in dementia, and we believe this can be accomplished through streamlined, clinical and surveyor training, improved quality measures to appropriately determine anti-psychotic drug use in long-term care settings, and other solutions. These are complex issues that call for a thoughtful PAUSE, designed to serve the needs of long-term care residents with dementia and those who care for them, for years to come.

For more information on these issues, and the solutions we are recommending, please visit https://www.agingresearch.org/projectpause.

Jim Scott serves as the chair of the Alliance for Aging Research’s Board of Directors. He is also the president and CEO at Applied Policy in Washington, D.C.