101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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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 in long-term care facilities. 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:

  1. feeling tired or sleepy
  2. sitting for too long
  3. being restrained
  4. 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 behavioural expressions (also called responsive behaviours, personal expressions and, unhelpfully, “challenging behaviours”) in people living with dementia. “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)
  1. pain
  2. constipation
  3. incontinence
  4. forced incontinence (needing help with toileting, but no help available)
  5. being wet / soiled
  6. being assaulted
  7. being neglected and/or abused
  8. feeling hot
  9. feeling cold
  10. fatigue
  11. exhaustion
  12. hunger
  13. thirst
  14. breathing difficulties
  15. hearing problems (helpful downloadable PDF by Agnes Houston MBE)
  16. vision problems (helpful downloadable PDF by Agnes Houston MBE)
  17. sensory issues (helpful downloadable PDF by Agnes Houston MBE)
  18. reaction to food (e.g. caffeine)
  19. stomach upset
  20. being restrained
  21. dry skin
  22. itchiness
  23. poor diet
  24. malnutrition
  25. ill-fitting clothes
  26. insufficient bathing
  27. lack of exercise
  28. weakness
  29. illness (e.g. various infections including UTIs)
  30. inability to verbally communicate (e.g. aphasia)
  31. being denied touch
  32. unmet sexual needs
  33. experiencing the side effects of medications (e.g. risperidone, quetiapine,) and/or polypharmacy
Psychological discomfort (36)
  1. fear
  2. confusion
  3. frustration
  4. boredom
  5. loneliness
  6. shame
  7. depression
  8. despair
  9. hopelessness
  10. grief
  11. loss
  12. humiliation
  13. isolation
  14. lack of love
  15. lack of attention
  16. feeling out of control
  17. feeling incompetent
  18. feeling unheard
  19. feeling worried
  20. feeling panicky
  21. feeling powerless
  22. being a “stranger in a strange land”
  23. being restrained/denied one’s freedom of movement or voice
  24. being told what to do
  25. being neglected
  26. being abused
  27. not getting to do what one wants
  28. too much stimulation
  29. too little stimulation
  30. too much routine
  31. too little routine
  32. life changes
  33. being purposeless
  34. being denied pleasure and play
  35. anxiety (as a result of all of the above and below)
  36. feeling angry (as a result of all of the above and below)
Social discomfort (16)
  1. having strange people all around
  2. being in close quarters with others
  3. being isolated
  4. being punished
  5. being ridiculed
  6. being bullied
  7. too much social stimulation
  8. too little social stimulation
  9. forced activity
  10. forced inactivity
  11. being denied access to loved ones
  12. being patronized
  13. being infantilized
  14. being shamed
  15. being embarrassed
  16. being forced to interact with people one doesn’t like
Environmental factors (16)
  1. noise  (also: helpful downloadable PDF by Agnes Houston MBE)
  2. unknown sounds
  3. loud sounds
  4. radio / television
  5. too much light
  6. too little light
  7. heat
  8. cold
  9. clutter
  10. uninteresting surroundings
  11. unfamiliar surroundings
  12. change in surroundings
  13. being confined to a small space
  14. being confined indoors
  15. stale air / lack of ventilation
  16. 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.

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5 Comments

  1. Pingback: four years later is too late for my mom. but it’s not for others.

  2. 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.

    • 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.

  3. 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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