I was deeply distressed to learn that the National Institute on Aging (NIA) is sponsoring a trial for the use of electroconvulsive therapy (ECT) for people living with dementia (PLWD) who exhibit severe aggression and agitation. Not only that, according to a press release on the website of one of the participating organizations, the study is touted as the “first randomized, double-blind, controlled study of ECT for agitation and aggression in Alzheimer’s dementia,” which means that it will compare ECT against other “standard therapies” such as antipsychotic medications and behavioral therapies.
This is inhumane and unacceptable, and I join many other professionals in our field who are also appalled by this study, which is funded by an $11.8 million grant.
I believe there are several factors behind the approval of this “treatment” by NIA. Let’s start with the term “behavioral and psychological symptoms of dementia,” or BPSD. BPSD refers to the actions of PLWD, such as confusion, aggression, anxiety, refusal of care, etc., as “symptoms” due to their diagnosis of dementia. And if actions are considered symptoms, then this provides validation for medically treating these symptoms, because it allows for symptoms to be considered hallmarks of a disease state.
I’ve been a nurse for many years, long enough to remember when we responded to actions of PLWD such as confusion or aggression by tying them to their bed or chair. That was acceptable nursing practice! I can be grateful that we’ve moved beyond that…or have we?
The first-line medical treatment for “behaviors” has been the prescribing of strong antipsychotic medications. Unfortunately, even when the FDA came out in 2005 with a “Black Box” warning about the risks of prescribing these medications for PLWD, their usage has increased. In an attempt to decrease the use of these risky medications, the Centers for Medicare & Medicaid Services (CMS) now requires documentation of non-pharmaceutical interventions prior to prescribing antipsychotics, in addition to informed consent.
Even though CMS has established a goal of continued reduction of the usage of these prescription medications in nursing homes it is still common for PLWD to receive these medications.
PLWD are often devalued and stigmatized by both the public and professionals. Once diagnosed, they are perceived as unable to participate in decision making, expressing their needs, and often are considered child-like.
Therefore, when PLWD express their preferences by trying to leave where they have been assigned (known as eloping), or resist care by someone they don’t know, or cry because of loss of meaningful and significant relationships, their actions are seen as symptoms of a disease, rather than communications.
What if we considered their actions as personal expressions, or as unmet needs instead of symptoms to be diminished by medications or other treatments? What if we looked at what is going on in their environment and also at their personal histories and put together a plan for interactions that could be meaningful for them?
Strong antipsychotic medications that were never meant for use among older adults, and now ECT therapy? Let’s stop the use of the term BPSD and instead start discussing what are the unmet needs and challenges of the PLWD.
Kate Swaffer, a well-known dementia advocate, and a PLWD, expressed her fears about this study and said, “ECT is surely just another form of RESTRAINT?????” (emphasis is hers.)
As professionals and family members, if we continue to dismiss normal human actions (Wouldn’t most of us resist intimate care if we didn’t know the person? Wouldn’t most of us be looking for a door to exit if we didn’t know where we were?) as symptoms to be medically treated, we are denying PLWD their ability to communicate and express their needs.
If actions are labeled as “out of control” or aggressive, without determining what someone with PLWD is attempting to communicate, we have pathologized normal human actions.
Anne Ellett is a dementia specialist for The Green House Project (GHP), an organization that seeks to radically transform nursing homes by partnering with aging services providers to reinvent care and empower the lives of people who live and work there. Anne created GHP’s Best Life dementia care initiative, which builds on the organization’s core values of meaningful life, empowered staff, and real home.