Rethinking Dementia: 30 Normal Human Responses #6

/ September 10, 2018

World Awareness Month 2018 is well underway and #DAI continues to run their daily series of #Hello my name is blogs to raise awareness of dementia and to share our members stories

However, this month, I am maintaining focus on my #BanBPSD blog series. Hence, I have put together the following list! Whatever we do, whoever we are, we must think about the complete medicalisation of normal human responses, which for the most part, has done far more harm than good. It has led to misleading us into thinking normal human responses are all due to the pathology of dementia, and need to be treated with medication or other forms of restraint.

30 Reasons People with Dementia may get Angry or Upset:

These are things anyone has a right to get upset about, not just people with dementia!

Please feel free to add this conversation, and list any normal human responses, that should not be classed as BPSD, and which with appropriate attention and support, the person should not need to be segregated, physically restrained or medicated.

My list above was inspired by this one of the Top 10 Reasons Kids get angry, which applies perfectly to why a person with dementia may get angry or upset, or may exhibit ‘behaviours’. Hence why I have modified and updated it to 30 reasons why people with dementia can quite reasonably become upset or angry.

It makes it reasonably clear most of the ‘symptoms’ as outlined in the BPSD guidelines, are normal human responses to the persons  situation.

This is apart from a few very that are specific to the pathology of dementia such as hallucinations or delusions, or something like aberrant motor changes or sensory changes. I

For now, all I hope for is that we all think more deeply about it…

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34 thoughts on “Rethinking Dementia: 30 Normal Human Responses #6”

  1. Adding to the Missing things should be Missing their home. I saw this vividly displayed in my great aunt who never had dementia. She was hospitalised after a fall at 99.5 years old. Her immediate family and doctors conspired to release her to a nursing home, rather than her home of 60+ years which she never saw again. She lived to her 100th birthday, but died within 3 months after. Missing her home, and the associated controls and with no prospect of things getting better, she just gave up and died.

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  4. Dear Kate,
    I am speaking at a caregiver conference next month in New Orleans, LA., USA. My topic is about being a detective caregiver. I am writing to ask your permission to print and hand out your 30 Reasons People May Get Upset to help drive home the message and also to mention your efforts (#BanBPSD) in my presentation. I will not try to make it my own material in any way. I am a follower of your blog and a fan of your work and like to let others know what you are doing. Thanks for all you do and for however you may respond.
    Beth Reinert

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    • Hi Beth,
      Thanks for asking. I am happy for you to use it, but would like to know how. For example, are you printing copies of it to distribute? If so, please print it straight from my blog, rather than copy and paste it onto a new document.
      I’d love to receive feedback as well, if you have time.
      Apologies also for taking so long to respond here; I’ve been travellign a lot and have not been on my blog for a while.
      Kind regards,
      Kate

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      • Turns out that I am providing your blog as a resource so I will forgo printing the list. I’ll let you know if I get any feedback. Your leadership has kept me informed since my early caregiving days and I appreciate your work so much. Thanks for getting back with me.

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  5. Pingback: Rethinking Dementia: Normal Human Responses #9 |

  7. Hello Kate

    Thanks for initiating this series of thoughts. I have a few to possibly add – although mine are merely observations rather than something I’m living with personally.

    # Having my walking around described as ‘wandering’ as if its something not normal.
    # Fitting in with what others decide I should be doing right now.
    #Being told this place is ‘home’ when clearly it is not at all like my home.
    #Being re-directed when I am upset or worried when I just need someone to spend a minute or two being with me.
    #Fast-moving and fast-talking people that come and go.
    #I can’t hear, see, explain or even concentrate and it constantly frustrates me.
    #Not being allowed to have a ‘sad’ time – or any other type of time when I have a particular feeling. It’s as if I should be perfect/pleasant at all times.

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  9. Kate,
    I have continued to refine my thoughts, as precipitated your posts on BPSD including: 1) Caregiving Teams, 2) Use of labels, 3) SYMPTOMS due to Dementia/Alzheimer’s vs CHANGES due to the disease, 3) Use of drugs for symptoms and changes, and 4) Attending to and respecting the human rights of people diagnosed with Dementia/Alzheimer’s. Believe me, I have spent HOURS!!! I will be anxious to hear what you and your readers think!

    http://mhorvich.blogspot.com/2018/09/behavioral-and-psychological-symptoms.html

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    • Michael,

      I respect your right to your opinion and appreciate the time you have taken to reflect and share your thoughts, however, I disagree with much of the substance of your post and categorically reject your proposal with respect to adding yet another set of labels rather than completely doing away with the damaging one we already have. Unfortunately, I don’t have time to comment in detail on your post, but here are a few specific thoughts:

      1 ) Re: “but that does not condemn all such facilities!”

      You are right “not all.” Nothing is all or nothing. However, I believe the number of bad ones by far outnumbers the good.

      2) Re: “I believe that labeling must remain flexible, open, nonjudgemental, and subject to careful, continuing scrutiny and the willingness to change.”

      It that’s true, then what’s the problem with doing away with “wandering/exit seeking,” or “combative? for example?” They are judgements.

      3) Re: “…messing ones pants is a DEMENTIA SYMPTOM.”

      I don’t think incontinence is necessarily a symptom of dementia, and if it is, then certainly not until the very final “stages.” I believe many institutionalized people living with dementia are actually forced into incontinence. Certainly, that was the case with my mother. Also, see here: http://myalzheimersstory.com/2017/12/02/understaffed-nursing-homes-force-residents-into-incontinence/

      4) Re: “Perhaps there needs to be two sets of labels to differentiate? BPSD (Behavioral and Psychological Symptoms) and BPCD (Behavioral and Psychological Changes?)”

      NO! Never. Bad enough we have one set of labels, let alone two ☹

      5) Re: The “use of drugs… is NOT ALWAYS BAD.”

      It may not ALWAYS be “bad,” but in the vast majority of cases, drugs are used to sedate/constrain people living with dementia for having normal human responses to certain sets of conditions which may be summarised as inadequate care.

      These are a few of my “off-the-top” observations. I have responded here on Kate’s blog because I commented on your last post on this issue, and my comment did not appear. Also, I notice the post itself seems to be gone, or perhaps I just can’t find it.

      Best regards,
      Susan

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  10. I believe what gives this “common sense” list so much weight, is that it is written by an EXPERT!
    All of these posts (and their feedback) are brilliant, because it is perceived to be from a “new” perspective. Or at least a new perspective from the point-of-view of many professionals.
    I am so thankful for the DAI for amplifying the voices of PLWD everyday, and through this series. So deeply grateful for the tireless work you do Kate, it really matters!
    I long for the day when not listening to those PLWD, is NOT an option!!!

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

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