Advocacy, Challenges & Solutions, NHBPS, Toward better care

how would we behave if we were locked in? research shows 96% of us would respond the same way many people with dementia do

I remain astonished that the vast majority of geriatricians, gerontologists, neurologists, and other medical geriatrics professionals persist in using the artificial construct of behavioural and psychological symptoms of dementia (BPSD) to describe the behaviours of people who live with dementia (PLWD) that care partners and care workers experience as challenging when it is ridiculously easy to prove (even I can do it), that such behaviour is normal under the circumstances in which PLWD find themselves.

In 2016, I created “a short survey on behaviour” and invited people to respond. The survey remains open online, and the results are consistent over time; as of May 7, 2018, 1,555 people had responded. Based on that piece of lay research alone, the only possible conclusion is that BPSD are not symptoms of dementia.

However, I am determined to gather more evidence to support my case; my goal is to stop the use of the erroneous and harmful label BPSD.

In April 2018, I created another survey (Is it normal?) related specifically to “wandering” and “exit-seeking behaviour.” As of May 7, 2018, 510 people had responded; I expect the results will be consistent over time, just as they are with “A short survey on behaviour.” It’s important to note that 90 per cent of the “Is it normal?” survey respondents indicated that, as far as they know, they do not have any form of dementia. Therefore, behaviour that 90 per cent of the respondents imagine they might exhibit under particular sets of circumstances (i.e. being trapped in their own home), could not be attributed to dementia.

A preliminary analysis of the responses to Question 6 (How would you feel/react if you were unable to leave your home when you wanted to because for some strange/unknown reason you couldn’t find the doors or, if you could find them, you couldn’t open them when you did?) may be found here.

Question 7, also an open-ended question, expands on Question 6; it asks respondents to imagine what they might do in a situation faced every day by many people who live with dementia and who exhibit what is labelled as “elopement,” trying to “escape/flee,” and/or “exit seeking” behaviour. Question 7 asks: “If you couldn’t find or open the doors to leave your home when you wanted to, what might you do? What action (if any) might you take?”

Of the 510 people who had taken the survey as of May 7, 2018, a total of 466 responded to Question 7. Here are some examples of their answers:

  • Call the watchman, call my neighbor, call my office, call my best friend. Open the windows, get on the balcony shout to someone to get help. If all fails, I could string some bed sheets on the balcony rail and slide down.
  • Try to smash my way out with something
  • Call out for help, ask people what to do, how to get out. Try to open the doors, look around for another way out. Enlist others to help. Plan a prison break. Call on the phone for help. I’d become very agitated, impatient, distrustful, restless, anxious and maybe fearful.
  • Jump out of the window
  • Look for another way out, i.e. A window, call a friend, call 911, scream out for HELP so that someone outside can hear me and help me find a way out.

To facilitate analysis, I grouped the 446 responses into six categories:

  1. Try to get help (e.g. call, ring, phone, shout, scream, yell, holler, ask, beg for help)
  2. Try to get out (e.g. climb, search, find a way out, break, smash, saw, hammer, kick, cut)
  3. Get emotional (e.g. panic, become upset, become angry, freak out, frantic, go bonkers)
  4. Don’t know (i.e. don’t know, not sure, can’t imagine)
  5. Withdraw (i.e curl up, sleep, go to bed, wait, shut down, withdraw)
  6. Do stuff (there are only two responses in this category: 1) Need to find activities to occupy myself; and 2) Do the jobs I’ve been putting off)

Here’s a graph showing the categories, as well as the percentage and number of responses in each category:

Virtually all of the ways respondents said they would react (i.e. categories 1, 2, 3, and 5) would be labelled BPSD (using the medical model). However, of the 466 respondents who answered Question 7, only 11 (2.3 per cent) said they had some form of dementia. That means a little less than 98 per cent of those who responded to question 7 either do not have dementia, or don’t know if they have it or not.

Also, of the 160 people who said they would try to escape in one way or another, slightly more than half (i.e. 87) said they would break, smash, or kick their way out.

Note: 444 of the 446 people who responded to this question identified as female.

The bottom line? Only the people who answered either “Don’t know” (n=18) or that they would “do stuff” (n=2), imagined that they would not exhibit some form of what would be labelled BPSD. That means that about 96 per cent of the respondents felt they would exhibit some form of so-called BPSD even though they don’t have dementia!

As this survey shows, when a human being is locked in and feels trapped:

Many of the behaviours that are labelled BPSD, are normal human responses to feeling or being trapped and/or threatened. What we name behaviours hugely impacts how we see and interpret them. It’s time to examine the wording of BPSD as it stands. Many of these behaviours are human responses to unmet physical, emotional and/or psychosocial needs; responses that can easily be seen as normal in the light of feeling threatened or fearful.

It’s time to reframe behavioral expressions in ways that enable us to identify their root causes and, in turn, inform improved efforts to implement humane, personalized, and effective approaches for the care of PLWD. Seniors with dementia need to be better understood and compassionately cared for, not drugged and managed to fit the constraints of a broken system.

Take the survey here.

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

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7 thoughts on “how would we behave if we were locked in? research shows 96% of us would respond the same way many people with dementia do”

  1. at the new dementia home that my mother in law is in – there are a few people who constantly look for ways to escape. they know they can go through the doors in the middle of the facility and walk around in the huge garden. but that is not what they want. they want to find the few outer doors and escape into the outdoor world.

    to prevent that, visitors need to be buzzed out when they are getting ready to leave. if any of the residents who want to escape are near the door, care people [they all wear ear buds and are in constant contact with each other] appear at the front door and gently guide the resident away so that visitors can leave.


    1. Yes, anniegoose, I’d be wanting to escape as well if I were in a similar situation which I probably will be one day…


  2. it’s actually quite lovely where my MIL is now. the emphasis there is to keep the residents’ mind stimulated all day long so that they don’t sink into depression and further into dementia and alzheimers.

    at the last place she was in – where the residents are not watched at all and if something happens like they fall and break something – which is what happened to her – it can be HOURS before that person is found – which would have happened to her but for the cleaning woman who was vacuuming in the hallway and heard my MIL screaming for help!!!!! that kind of treatment is unconscionable.

    one of the places she was at – when she had the stroke a few years ago which started this whole dementia thing – there was a man who was going into the women’s rooms and sexually assaulting them. the women would be crying for help and not one of the people working at that facility would go and help them. when i complained – after hearing one woman scream for 1/2 hour that the man was raping her – i was told – ‘o we never pay attention to what they have to say.’

    as we were leaving that man came up and started groping me. i started screaming and protesting and was ignored. i finally walked over and stood between my husband and brother-in-law to get away from that man. at that point one of the male caregivers led the man away.

    even my mother-in-law [MIL] had complained about him coming in her room at night and she was ignored by the staff.

    unfortunately, this time around – when we needed to find her a new place – THAT place was one of the options. and promptly rejected.


      1. actually my sister-in-law and brother-in-law found this place.

        but they also had visited at least two more places before choosing the one she currently is in.


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