20 behavioural expressions for which antipsychotic medications are unwarranted and ineffective in people who live with dementia

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Antipsychotic medications are meant to treat psychosis, not dementia. Dementia care pioneer Dr. Allen Power explains:

“What happens in the brain chemically–even when people are labeled “delusional”–is not the same in diseases that cause dementia as in classical psychosis where dopamine activity is increased, causing hallucinations and delusions. The primary action [of antipsychotics]in that disorder is achieved by blocking dopamine activity.

But no form of dementia involves heightened dopamine activity; in fact many people, including those with Lewy body dementia, have decreased dopamine activity. So dopamine-blocking drugs not only have no chemical rationale, they also are particularly toxic for such people.”

The responsive behaviour sometimes expressed by people who live with dementia is more often than not the same kind of behaviour most people who don’t have dementia would express under similar circumstances. If you don’t believe me, take this four-minute survey and see for yourself.

Not only are antipsychotics unwarranted for the behavioural expressions listed below, they are ineffective in changing the behaviour for the reason stated above. In fact, they may exacerbate the behaviour they are being inappropriately given to treat (see the side effects for Seroquel/quetiapine and Risperdal/risperidone for example). Furthermore, administering these medications results in sedation that makes it virtually impossible to find and address the real cause(s) of the behaviour.

Here is a list of behavioural expressions for which antipsychotics SHOULD NOT be prescribed for people who live with dementia because they are largely ineffective in treating the root causes:

  1. try to get out or away from wherever they are (note: often labeled as “wandering,” “exit seeking,” “elopement,” and other such terms)
  2. decline help others may think they need (note: labeled as “resists care,” or “refuses care”)
  3. go into places or try to go into places other people think they shouldn’t go (e.g. other residents’ rooms in institutions, locked rooms, private spaces, etc.; note: also often labeled as “wandering)
  4. mistake things for other things (e.g. think the TV remote is a telephone, that things that are not food are food, etc.)
  5. use things in ways they are not intended to be used (e.g. put a wet towel in the microwave to dry it)
  6. become unhappy or moody
  7. see or hear things differently than others do and are not frightened by their differing perceptions (e.g. think shadows on the wall are people; note: may be called “hallucinations”)
  8. get angry from time to time (as opposed to continuously flying into violent rages for no apparent reason)
  9. not want to do things other people believe are “for their own good” (e.g. take medication, have a bath or shower, go to sleep, get up in the morning, eat what is put in front of them, change their clothes, etc. note: also often labeled as “resists care,” or “refuses care”)
  10. believe things that are untrue (e.g. that a dead spouse, parent, friend, etc. is still alive even though they are long gone; note: these kinds of beliefs may sometimes be called “delusions”)
  11. become mildly or moderately anxious
  12. hoard or hide things
  13. call out, scream, yell, or verbalize repeatedly in other ways
  14. make noises such as clapping and tapping
  15. be unable to sit still
  16. want to stand up or walk
  17. go to the bathroom in public and/or other inappropriate places (sometimes described as “voiding at will”)
  18. take their clothes off in public
  19. eat things that aren’t food (see 4 above)
  20. curse and/or say socially inappropriate things that others may experience as being insulting or hurtful

This list is based on an excellent article by Dr. Allen Power (which also addresses the small number of situations in which the use of antipsychotics may be helpful), and a concise, practical, bullet-point fact sheet produced by Alberta Health Services  as part of their Appropriate Use of Antipsychotics (AUA) Toolkit.

Dr. Power is the author of Dementia Beyond Drugs: Changing the Culture of Care and Dementia Beyond Disease: Enhancing Well-Being, both of which I highly recommend. He is also the Schlegal Chair in Aging and Dementia Innovation at the Research Institute for Aging.

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3 Comments

  1. Leah Bisiaini on

    Hi my friend amazing Susan,
    You know my views on this issue as they are the same as yours but I shall again place my usual comments for the purpose of sharing this with as many people as possible. It is too important.

    In relation to medication management, the predominance of psychotropic medication must be seriously reflected upon.

    Majority of persons living with dementia do not actually need these medications, and over medicating people because you do not understand them is considered inappropriate and unacceptable behaviour management.
    How dare we consider this a humane and caring attitude? Would we drug our children for having a hissy fit down the street? Do we drug our dogs for barking in the yard?

    I question this very disheartening and destructive attitude of drugging human beings, who are in reality, most probably just trying to communicate to us in the very best way they can that their needs are not being met, they are in pain, they are frustrated, or living a life of core despair because those in the supposedly care giving industry lack the empathy and compassion to enter their reality with them and understand how eternally difficult this must be.

    May I also suggest, (and have proven with evidence based research), that the prevalence of behavioural expression is most often related to ‘our’ behaviour and judgmental attitudes towards people living with dementia. It is time we looked at ourselves and realized that we are often the triggers, and if we adjusted ourselves and learned to be a little more flexible in our approach, then majority of behavioural expression is eradicated. It is time to take our head out of the sand and move forward from the old archaic care philosophies.

    All persons have the right to speak up about their frustrations, and communicate this in the best and only way they know how, whether verbally or exhibiting behaviours that communicate this. These types of anxiety related behaviours will occur frequently if caregivers continue to disregard and neglect the differing reality of the people they care for.

    Furthermore, and importantly, it must always be considered preferable to reduce the use psychotropic medications because they are so destructive and harmful to quality of life. This is a no brainer!
    Sitting in an armchair for the remainder of the journey, drooling is not improving a persons life quality – this is neglect pure and simple!!!!! This overuse of medication is considered elder abuse.

    Majority of people living with dementia do not and never will benefit from this type of chemical intervention. This highlights the significance of exploring alternate non pharmacological strategies, including person centred care approaches, validation and an in depth understanding of the individual specific needs of the person being cared for.

    The management of behavioural expression in people living with dementia has for too long relied essentially on medications that sedate. Other additional and undesirable effects place that person at significant risk because of poor mobility, increased risk of falls and serious fall related injury, decreased cognition and evident destruction of life quality. And then we enter the area everyone also then complains loudly about – acute delirium and depression!!!!!!!
    What are we doing people?????

    By using these medications we are creating a situation where a person deteriorates faster than they would if treated with the care and support they deserve, and enabled to live their life. Again, neglect and reportable abuse in my view.

    Suggestions in the above comments, and what I have been promoting for the last 25 years in all my research, is we must only ever use these type of medications “as a last resort” – and this should be taught and implemented to all caregivers, formal and informal, inclusive of all health professionals.

    Otherwise people with dementia may continue to be dehumanized, to the stage where they continue to be stripped of and lose their personhood, rights and dignity, possibly create dependence on the negative effects of medication and live the remainder of their days in a state of sadness and despair.

    This my friends is the disgrace of our industry.

    • Leah, you and I may be on opposites sides of the world but we are on exactly the same page on this issue. I watched my mother be needlessly, inappropriately and cruelly overmedicated with Seroquel and Risperdal for four years. It was like witnessing her slowly being tortured and battered to death in a painful process that really had nothing to do with the disease and everything to do with the environment in which she lived and the so-called “care” she received. You are right: it’s neglect and abuse, and it’s a disgrace. That’s why we must #FightTheGoodFight

      • Leah Bisiani on

        Yes we are Amazing One and it’s an area I consider so heinous that there is no way it can continued to be ignored and brushed under the carpet. Our voices are loud my friend, and we know together we are even more powerful.
        It is never acceptable to drug people because you don’t understand them. It saddens me you had to deal with this through personal experience.
        This never is acceptable and never had been!!!!!!!!
        As I often say, people who say nothing and observe this abuse, (meaning medical staff, nurses etc), are condoning this appalling, destructive and negative attitude and culture. There are no excuses when we are educated enough in the medical and aged care sector to know better. I suppose this is the most dreadful part. That the medical professionals who are in a profession of caregiving, care more about themselves then those they are supposed to be providing a service to.
        I shall always continue to advocate for what is right!!!

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