Recently, blogger Susan Macaulay posted a comment detailing the various medical organizations and government bodies around the world that have spoken out against the use of antipsychotic drugs in people living with a diagnosis of dementia. She cited several guidelines whose language was quite clear on the matter. Or was it?
Susan finished up the post by asking why, in the face of all of these guidelines, we still see so many of these drugs being given. Since Susan tagged me when she posted this on the Twitter feed, it only seemed appropriate that I give my opinion, (though 140 characters wasn’t going to be enough).
Would it surprise you if I said that the very organizations that are discouraging the use of these drugs are actually convincing people to use them?? It’s a matter of language.
You see, in spite of the apparent strong wording of these guidelines, virtually all say that the drugs should not be used as a first line therapy for behavioral and psychological symptoms of dementia (“BPSD”). And there’s the rub.
The biggest barrier to curbing inappropriate drug use lies in the characterization of people’s words and actions as symptoms of disease. The term BPSD (sometimes referred to as NPS—neuropsychiatric symptoms of dementia) creates the mindset that provides the slippery slope to using just those drugs we wish to avoid.
A symptom is something a person feels as a result of a disease. But if someone is upset because her words are ignored, her shower is too cold, or she is not treated humanely, are those symptoms of dementia? Is being upset about being kept in a locked unit a symptom of dementia? If you believe that to be the case, then it would be hard not to conclude that psychotropic drugs are needed.
But if 150 U.S. nursing homes use no antipsychotics and hundreds more only use them 1-3% of the time, how does the BPSD concept explain those successes? Is a humane, relational approach to care somehow targeting dopamine receptors or activating “low affinity N-methyl-D-aspartate antagonists” in the brain? Or is it just possible the concept is incorrect?
Now, let’s be clear: there is real neurological damage in the brains of people living with the diagnosis. As a result, the person may be less able to cope with stressors, may not remember the information needed to maintain a sense of agency and control over the situation, or may have to rely on different communication pathways than we appreciate. But that is not the root cause of the distress, and drugging the brain is not the solution.
This is more than a matter of semantics. Consider this: antipsychotics have been shown in multiple studies to be largely ineffective and potentially dangerous to use for people living with dementia. They are not approved by the U.S. Food and Drug Administration, and have a black box warning not to use them in this population due to excess mortality and stroke. Janssen Pharmaceuticals, makers of the antipsychotic drug risperidone, paid a $2.5 billion criminal penalty last year for illegally marketing the drug for use in people with dementia and adolescents. But in spite of all this, risperidone has been approved for use in Australia to treat “BPSD.”
Are Australian brains different from American ones? Of course not; so in effect, the Australian authorities have sanctioned such drug use, and all of its attendant risk, for their citizens. Furthermore, most journal articles and media state, “up to 90% of people with dementia will have a BPSD.” So virtually everyone with the diagnosis of dementia in Australia can legally be given this drug, despite all the evidence against it.
The origin of the BPSD terminology can be linked to task force meetings of the International Psychogeriatric Association in 1996 and 1999. And this task force was supported by an “educational grant” from—you guessed it—Janssen Pharmaceuticals.
This brings to mind the famous quote by Clay Shirkey that “institutions tend to preserve the kinds of problems for which they are the solution.”
But before we simply condemn the psychiatrists of the world for perpetrating this paradigm, consider this: the BPSD concept has been avidly taken up by Alzheimer’s societies, the media, health care professionals of all stripes, and most educational programs, even those that claim to be “person-centered.”
So to get back to Susan’s question of why such drug use continues, we must all start by taking a long, hard look in the mirror. And then we must stand up and speak out.
This concept is so ingrained that I am very likely to be dismissed as a lunatic. And yet the proof is right in front of us. Many organizations that have adopted my strategies and similar ones can preserve well-being and virtually eliminate the use of such drugs, if they do the necessary transformational work. Following the BPSD mindset has never accomplished these results—only more medication, stigmatization, and ill-being.
I have had some discussions with a small cadre of like-minded folks who wish to challenge this paradigm (Prof. Dawn Brooker, Christine Bryden, Daniella Greenwood, Prof. Steven Sabat, and Kate Swaffer); but it’s an uphill battle against an entrenched philosophy, and not for the faint of heart or the easily offended. Who wants to help me rattle some cages?
Once again, Al has hit the nail on the head. I believe we need to establish some clear lines that should not be crossed. BUT I also believe that until we really address the concept of the person living with dementia’s civil rights and civil protections, this will not substantially change. What are the right guidelines/boundaries for use of chemical restraints and physical force to provide what is typically perceived as necessary personal care, medical management, financial management, movement management, and even relationship management? The idea that we have a right to use medications to allow us to do things to people that we call “care” (but the person living with dementia perceives as dangerous, intrusive, and unnecessary) in order to “get it done”, “reduce the danger for care providers”, or “keep them calm”, would be rejected in just about any other scenario I can imagine. Yet somehow, when terms like “dementia”, “agitation”, “inappropriate”, or “aggression” are used, there seems to be an immediate knee jerk reaction that drugging the person is better than putting others at risk or requiring care partners to master and use skills that match the person’s altered abilities in order to work with the person as he or she is in that moment. In my opinion, it is time to begin requiring awareness, knowledge, and skill that can avert problems, deescalate situations, modify tasks and task expectations and demands, and appreciate sensory needs and intolerances from those who would deliver the programs, services, and care. There are millions of episodes of what would be called aggravated assault or sexual assault occurring to the person with dementia who is supposedly receiving care behind closed bedroom and bathroom doors. There are also thousands of incidents of abuse and aggression against front line workers who are put in impossible situations without the support or training that is needed to deliver care in ways that are accepted and appreciated by those on the receiving end. As long as our cultures ignore and allow this happen, it will. It is time to move from a system of blame and shame to one of empowerment and purpose. Being willing to analyze without judging, consider how and why these situations happen, and support the needed culture change are all critical pieces to bringing dementia care out of the darkness. WE have to be the ones to change our way of thinking, seeing, acting, listening, and responding! In other words, change OUR BRAINS and how it guides directs and controls each of us in our interactions and behaviors. It cannot be what I want to do/say/have happen. It must be what is best for the other and me, to get where we are trying to go.
Simply not giving medications is not the answer. Telling someone to NOT do something, isn’t helpful. Offering medications as a last resort is not helpful UNLESS there is something offered that enables and empowers those on the scene. We must provide care partners/supporters with specific tools that they have rehearsed over and over, so that they are able to actively connect with the person living with dementia to complete what is possible in an acceptable manner. Only building care partner/supporter skills will change the process and the outcome; hence the “behavior”, desire for the drugs, and the physical restraining approaches of those who prescribe and provide services will decrease. Not doing so will typically leave them continuing to go to the “last resort” over and over.
I agree with Al that we need to change the conversation. I would add that one change is to begin to provide enough practice with practical skills in visual, verbal, and touch cues, combined with environmental supports and task modifications, to empower those who are attempting to provide care with what is needed to be effective. If we don’t change how we address this issue, I am quite sure we will change the names and possibly the types of drugs or interventions we use, but the quality of life for the person living with dementia and care partner alike will not improve.
I work in a government funded project that operates within different organisations across Australia. The name bestowed on this project, and the designation subsequently given to its members, are a sore point so the team unanimously vowed to change the terminology. Here “comes the rub”, despite our drive, desire and attempts to initiate change, our hands have been completely tied by the government departments who fund the project. We are still left with these awful terms which we try to avoid using. In fact, when interacting with our clients we have become quite skilled at diverting attention away from the concept of BPSD and the negative connotations it represents.
I am very proud of our team’s overwhelming support from the people we work for. By that I don’t mean the departments or the organisation. I mean the people with dementia, their families and their carers who request our help on every stage of their journey whether it’s in their home, in their community, in a hospital or in their age care facility. I am also proud that we promote and ensure the individual’s wellbeing by modelling and teaching person-centred care in all these settings. I have to say the teaching and learning process is always two-way. We view their request for help as a privilege because we are blessed to be in that position to provide help.
Sadly, I have experienced some negative misconceptions i.e. that the team lacks the desire or ability to promote good, non-pharmaceutical, person centred care. We are a clinical team, there is a very good reason for that, we have no choice but to interface with this current medical health care model. These human beings and their families are, not just exposed to it, but living in it every day for decades it would be wrong of us to lose sight of this fact. I also find it disturbing that some feel they ‘own’ the person centred concept to the exclusion of others whom they believe don’t have the imagination to understand it.
I was very relieved to read your balanced words and to see that you are prompting us to look hard at ourselves because indeed “we have met the enemy and he is us”
Thanks for weighing in, Anne. I have several colleagues in Australia who have talked about this initiative. I am glad to hear how you approach the work, because it is something that certainly could be taken or delivered the wrong way in the wrong hands. It’s good to hear your thoughts and your process! All the best.
Hi Al, you are the man to take up this fight and I’m ready to join you on the Speaking Circuit. We need to talk again about specifics so i can share your info, OK? Time to take up the challenge together.
keep going with this message…there are loads of us who are standing beside you 🙂
Yes, I want to rattle lots and lots of cages. With that as a goal, I would like to meet with you and the like-minded people you mentioned to strategize how best we can do it. When and how can we make that happen? I have lots of big ideas and different perspectives to share…
We know our position on this…I am asking the same questions Susan. Thank you Dr Power
Al, Lets Roll! We have a lot of ground to make up!
I am right with you, more than ready to rattle some cages. Just tell me how to work with you!
I just want to thank you for asking these questions. I am so happy to feel that ChangingAging.org et al have my back. (Make that 70 million backs, since I’m a quintessential Boomer.)
I believe my dad died because of an overuse of medications. Yes, he had Parkinson’s. Yes he had some dementia. But the load of meds he had did NOT help him. I have a Masters in Gerontology…I knew what was happening was not okay. I knew there had to be a better way. But it was too late to save him. He died last October. And I still sit up at night wondering how things could have been different. I can’t get his life back, but my hope is that I can work to help others. Thank you to all of you working to change the tide. I’d love to help rattle some cages!
I am in full agreement with this post. Too often, medication interferes with a person’s quality of life. I pray that, if I am ever diagnosed with dementia, I will be lucky enough to have a caregiver like Dr. Power.
Thanks for this post Dr. Al.
I am definitely rattling cages, one client at a time. As a professional guardian and geriatric care manager, I am continually locking horns with care staff and medical practitioners who want to “prescribe something” because my client doesn’t want to get in the shower or resists help with dressing. I just say NO – let’s work on the real reason my client doesn’t enjoy those activities. Let’s figure out what that person’s likes, dislikes, and sensory needs are. Let’s look at caregiver technique. By taking a stand on this issue, I have managed to eliminate nearly all psychotropic drug use with my clients. I also promote your books wherever I go!
Glenna Wilder
Oregon
Glenna, Kudos for what you are doing! I did the same in residential care for 16 yrs and had the same results. I would love to connect with you!
Are you on LinkedIn?
Judy