STOP BLAMING DEMENTIA FOR CHALLENGING BEHAVIOUR!!

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.