In spring 2016 I gave a webinar entitled “How to become a better dementia care detective” in partnership with a former associate. This post summarizes what we discussed in that webinar. I’ve removed the case study and poll questions that were part of the full one-hour webinar, and created a 23-minute version that explains five of the 10 ways I recommend to get to the bottom of behaviour and problematic situations in dementia care both at home and in institutional environments.
Here it is (apologies for the less-than-stellar visual quality, but the audio is fine. Also, see below the video for summaries of the tips and the bottom of the post for links to things mentioned in the clip, AND you can answer the same questions I asked in the polls at this link):
1) Delete and replace misleading assumptions
To start with it’s important to delete the assumption that the behaviour of people who live with dementia is caused by the disease, and to replace that assumption with the understanding that the way people with dementia behave is much like how the rest of us would behave in similar circumstances. You can experience that for yourself by doing this questionnaire, which takes about four minutes to complete: A short survey on behaviour. Learn more about the biomedical and experiential models of dementia here.
2) Find reliable witnesses
Human beings tend not to be reliable witnesses, as courts have proven time after time. One of the most reliable witnesses is a CCTV camera, and I feel strongly that all long-term care facilities should be fitted with CCTV throughout public and private areas. However, at the moment, most facilities are not so equipped, and neither are most private homes, which means we must rely on people. All of that being said, I think it’s important to not dismiss the testimony of people who live with dementia as they are the most reliable witnesses of their own experience despite the impacts of their disease. Watch the video above for a GREAT real-life story.
3) Ask questions (5Ws & some Hs)
When looking at specific situations, it’s helpful to use the five “Ws” that detectives and journalists ask: who, what, when, where, and why. In the case of situations involving people living with dementia , the “why question” is probably the most important, and yet the one that is least asked because people make the assumption that the behaviour is caused by the disease when most often it’s not (see 1) above). After the five W’s, gather more information by asking a bunch of “how” questions such as: how much, how often, how long, how many, etc.
4) Re-create the “crime scene”
Do what any good detective would do, and walk through what has happened with the players or substitute players step by step in the environment in which the situation occurred. See if you can find in the sequence potential causes for what’s happened. Try to look at it from the point of view of the person is living with dementia rather than from your own perspective.
5) Use your senses
Experience the situation, again from the perspective of the person his living with dementia, using your five senses: sight, sound, touch, smell, taste. For example, were the lights too bright? Or too dim? Were there bells ringing? Alarms sounding? Loud bangs? TVs playing violent content? Sound and noise are important factors to consider. Is it or was that too hot or too cold? Was there in the noxious smell and the environment such as bleach or other cleaning material? Did the food or water taste bad? Is the medication bitter?
Here are the five additional ways I didn’t cover in the video, with short explanations and links:
6) Ask more questions
In addition to 3) above, keep probing, particularly drilling down using “why” until you get down to the root cause. From a global perspective, here are questions I’ve developed to help me better understand what may be going on. You might find them helpful too:
- 20 questions that help explain why people with dementia get agitated and physically aggressive
- 20 questions to ask yourself about “wandering”
- 20 questions to change the direction of dementia anxiety and aggression
7) Listen carefully/critically
This can be extremely difficult. One of the hardest things is to let go of our assumptions (see 1) above) , and listen objectively. But it’s also critically important. Try not to be judgmental, particularly with respect to what the person living with dementia says or does. Step back. Be self-aware. I used audio and video recording to help me. I watched and listened to myself to check voice tone and body language so I could hear and see what I was doing well and where I could improve. Listen with the same critical ear to others’ versions of events.
8) Re-examine the “facts”
Don’t take what you have been told, or even what you observed yourself at face value. Ask yourself if the “fact” really is a fact, or is it an “alternative fact,” or even a lie. What evidence is there to back up the facts? If there is no evidence, can you source any? If not, it may be best reconsider how much weight you give to that particular piece of information.
9) Consider motives
Ask yourself what is driving behaviour – not just that of the person who lives with dementia but also of those reporting the behaviour of the person who lives with dementia. Did the care worker say she had changed the client’s brief when in fact she hadn’t? Who benefits most when someone is sedated rather than engaged with life through activities and socializing?
10) Look outside the box
Keep an open mind. Consider all possibilities and remember that reality is sometimes stranger than fiction. Sometimes the thing that appears to walk and talk like a talk is actually a swan in disguise.
Resources & links:
- A short survey behaviour (takes about four minutes to complete)
- 29 Normal Behaviors You Would be Sedated for
- 10 Dementia Detective Basics “Cheat Sheet’ PDF