Are people who live with dementia sometimes uncooperative, upset, angry or even “aggressive?” Yes. But then again, so am I. If provoked, do people who live with dementia sometimes “lash out?” Yes. But then again, so do I, although extremely rarely in a physical way because I have other means to express my anger. If I didn’t have those means, who knows what I might do?
I don’t believe, in general, that responsive behaviour attributed to dementia is the result of whatever brain disease (e.g. Alzheimer) is causing it. I don’t believe it because people who don’t live with dementia, including me, would behave in the same ways under similar circumstances.
Many care partners, care workers, and medical professionals make the mistake of blaming the responsive behaviour of people who live with dementia on their disease. Jumping to this more-often-than-not erroneous conclusion means the root cause(s) of the behaviour remain(s) unknown.
People in the mid to later stages of Alzheimer disease (for example), may find it difficult, if not impossible, to identify and articulate the cause of behaviour that is problematic to others–sometimes that’s a challenge for the rest of us as well! It’s incumbent on care partners, care workers and others to become “dementia detectives,” and try to figure out what underlies the behavioural expressions we find problematic in the people we interact with who live with dementia.
Here’s a “starter list” of possible causes:
- physical pain
- emotional pain
- medication side effects (Seroquel/quetiapine or Risperdal/risperidone for example)
- boredom / inactivity
- too much or too little sensory stimulation
- being too hot or too cold
- being hungry or thirsty
- being made to wear clothing that doesn’t fit (too tight, too loose)
- being made to wear clothing that is soiled or belongs to someone else
- sleep issues (too much or too little)
- incontinence / needing to be changed (video)
- changes (in environment, routine, and/or care partners)
- vision problems
- hearing problems
- sense of loss (incapacity, friends, abilities, roles)
- too much noise / sudden loud noises
- being scolded / reprimanded yelled at
- being surprised / frightened
- being threatened
- being treated or spoken to like a child
- being told what to do
- being forced to do things they don’t want to do (e.g. take a bath/shower, get up, go to bed)
- being forced to sit for long periods with nothing to do
- being forced to eat unappetizing, tasteless food they don’t like
- being forced to be with people they don’t want to be with
- being forced to take medication they don’t want to take
- being physically restrained
- feeling overcrowded
- not being allowed privacy
- feeling tired or unwell
- having “a bad day”
- personality conflicts
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 us as care partners can help us find solutions other than inappropriately medicating people with antipsychotic drugs.
Feel free to add to the list in the comments below.
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