While researching my second JAMDA article, I came across a relatively recent paper by Dr. Jiska Cohen-Mansfield on the causes of discomfort in people who live with dementia (PLWD) in long-term care facilities (LTCFs). Cohen-Mansfield and her team developed a Sources of Discomfort Scale (SODS), as part of a larger study for the “Treatment Routes for Exploring Agitation” (TREA). The SODS lists the 20 most common sources of discomfort the researchers discovered, of which the top four are:
- feeling tired or sleepy
- sitting for too long
- being restrained
- inadequate lighting
This caused me to revisit my list of 35 things that may cause people with dementia (and you) to become uncooperative, upset, angry, anxious or “aggressive,” which I then found inadequate. Somewhere else (I don’t remember where now), I had come across the concept of separating sources of discomfort and agitation under four broad categories:
- physical discomfort
- psychological discomfort
- social discomfort
- environmental factors
Like Dr. Cohen-Mansfield, I continue to explore the root causes of the of the reasonable reactions people living with dementia have to the circumstance in which they find themselves. These reasonable reactions are also sometimes called behavioural expressions, responsive behaviours, personal expressions and, unhelpfully, “challenging behaviours.” “The broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease” gives specific examples drawn from my personal experience of how the biomedical model misses the mark when it comes to identifying the causes of behavioural expressions in PLWD.
Based on my own experience and observations, I developed this list of 101 possible underlying reasons for the responsive behaviours of PLWD in LTCFs, grouped into the four broad categories mentioned above:
Physical discomfort (33)
- pain
- constipation
- incontinence
- forced incontinence (needing help with toileting, but no help available)
- being wet / soiled
- being assaulted
- being neglected and/or abused
- feeling hot
- feeling cold
- fatigue
- exhaustion
- hunger
- thirst
- breathing difficulties
- hearing problems (helpful downloadable PDF by Agnes Houston MBE)
- vision problems (helpful downloadable PDF by Agnes Houston MBE)
- sensory issues (helpful downloadable PDF by Agnes Houston MBE)
- reaction to food (e.g. caffeine)
- stomach upset
- being restrained
- dry skin
- itchiness
- poor diet
- malnutrition
- ill-fitting clothes
- insufficient bathing
- lack of exercise
- weakness
- illness (e.g. various infections including UTIs)
- inability to verbally communicate (e.g. aphasia)
- being denied touch
- unmet sexual needs
- experiencing the side effects of medications (e.g. risperidone, quetiapine,) and/or polypharmacy
Psychological discomfort (36)
- fear
- confusion
- frustration
- boredom
- loneliness
- shame
- depression
- despair
- hopelessness
- grief
- loss
- humiliation
- isolation
- lack of love
- lack of attention
- feeling out of control
- feeling incompetent
- feeling unheard
- feeling worried
- feeling panicky
- feeling powerless
- being a “stranger in a strange land”
- being restrained/denied one’s freedom of movement or voice
- being told what to do
- being neglected
- being abused
- not getting to do what one wants
- too much stimulation
- too little stimulation
- too much routine
- too little routine
- life changes
- being purposeless
- being denied pleasure and play
- anxiety (as a result of all of the above and below)
- feeling angry (as a result of all of the above and below)
Social discomfort (16)
- having strange people all around
- being in close quarters with others
- being isolated
- being punished
- being ridiculed
- being bullied
- too much social stimulation
- too little social stimulation
- forced activity
- forced inactivity
- being denied access to loved ones
- being patronized
- being infantilized
- being shamed
- being embarrassed
- being forced to interact with people one doesn’t like
Environmental factors (16)
- noise (also: helpful downloadable PDF by Agnes Houston MBE)
- unknown sounds
- loud sounds
- radio / television
- too much light
- too little light
- heat
- cold
- clutter
- uninteresting surroundings
- unfamiliar surroundings
- change in surroundings
- being confined to a small space
- being confined indoors
- stale air / lack of ventilation
- lack of sun
This list isn’t exhaustive. To add to it, ask yourself what would make you feel uncomfortable, anxious, unwilling to cooperate, angry, “combative,” and/or upset. Correctly identifying the root cause of behavioural expressions that are problematic for care workers and LTCF staff can help us find solutions other than inappropriately medicating people with antipsychotic drugs.
20 questions that help explain why people with dementia get agitated and physically aggressive
See also:
https://kateswaffer.com/2018/09/10/30-normal-human-responses-6/
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Thank you as always Susan. You are an absolute inspiration. As always, I also do my best as a cognitively aware person, within my limited ability, to perceive life through the eyes of those inspirational people who live with dementia. I hope this article written to expose subjective attitudes toward behavioural expression, helps shake up those who continue to foster these disrespectful mindsets. Time to be accountable for being the triggers to the very behaviour we consistently judge people on.
https://www.linkedin.com/pulse/understanding-unequivocal-rights-people-living-dementia-leah-bisiani
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We are on the same page @Leah!
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A very detailed and fascinating review, I might add that besides these characteristics, it is my belief that our patients are over-medicated. I always recommend a neurologists review when over three meds are prescribed. As well as poly medicine if the patient has difficulty taking more than one application.
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I agree Norman. Further, I think people are over-medicated because care staff don’t understand the underlying causes of behaviour on this list, and then blame the behaviours that challenge them on dementia rather than bothering to determine the root cause.
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My poor husband as demensher some time things are hard for him he sleeps on & off all day he use to be a hard worker now he tells me he fed up he try’s to do things but it a effort
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good information. Suggest that when using acroymns, to please identify what it means the first time you use them. What is PLWD and LTCF? Unless I missed it, I don’t know what these mean.
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Whenever the terminology is used saying that behaviour of a person living with dementia is challenging, it should be reflected back to the person making the observation. It’s not the person living with dementia’s problem but it is the other person’s. I recently had the unusual situation of sitting in with my mother in an online facilitated group put on by a research facility for those caring for people with FTD. I had to sit in on this because my mum is not particularly comfortable with technology so I was helping her. Having been recently diagnosed with FTD myself it was interesting to hear other caretakers as I’m also an assistant family carer of my father with far more advanced dementia.
Two things were glaringly obvious to me. Firstly, nobody, including the professional facilitators, had ever tried to investigate the thought patterns of the people with dementia from the source; instead they conveniently invoked the faulty belief that people with FTD cannot understand that they have the disease and the disease’s implications.
Secondly, I would have loved to have told some of the carers in the group that the problem was with them because they had unrealistic expectations.
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