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comments: a short survey on behaviour

1

If you have not already done the short survey on behaviour, you can do it here.

These are the “short survey on behaviour” comments as of May 25, 2017; the quantitative results are here. The comments from all quarters have been overwhelmingly positive, supportive and constructive. Most people “got” the idea behind the questions; a few didn’t.

“most interesting” comments

Of the hundreds of comments I’ve received so far on the survey itself as well as via social media, these are the ones I find “most interesting.”

  1. Am I human – like the rest of everybody? YES!
  2. I love this and believe it is a great training tool. It brings to the forefront that persons with Alzheimer’s or Dementia are not defined or exhibiting behaviors based on a diagnosis but based on being a human being! Thank you for sharing.
  3. We need to all understanding that people with dementia are firstly people. Their behaviours only appear bizarre because they can make no sense of the world around them. Patience is what is needed – that and an awareness that people with dementia are not a threat, they just need to be treated as vulnerable people. Some treat dogs with more compassion. I could go on …!
  4. I don’t understand the point of this survey. The questions are all very pointed questions that talk about specific behaviors common to both caregivers as well as dementia patients and seem to want to equate some sense of “normalcy” to them, as if the idea was for the person without dementia to have a sense of sharing the experience of the person with dementia. This is really not possible. Not really. Those of us without dementia still have our ability to reason and think logically, and cannot truly understand what it’s like to not have that ability.
  5. Good way to get through the message that expressions of feelings in persons living with dementia are normal reactions to what they perceive is happening in their reality. We just need to find out what they are trying to tell us
  6. Fascinating to consider that we pathologize behaviour in persons with dementia that we accept from ourselves, even if it did compromise our safety or dignity. I know from personal experience it is tough to be a caregiver, but it also strikes me that one of the biggest problems we have with people with dementia is their non-compliance with what we think is best. Interesting mirror held up with this survey.
  7. So why should people with dementia be expected to behave otherwise? Rhetorical question. Good survey.
  8. There are so many proven evidence-based studies which prove batch living denies the basic rights of the individual. Yet we continue to build Communities’ where people are placed together based on two insignificant factors age & undesired disability. Dementia villages are the new acceptable forms of batch institutionalised form of living.
  9. This is such a complicated issue that, like just about everything else on the planet, has to do with money. And the fact that people over 50 are seen as low-value in our society. Ideally, we would have caring homes for people with dementia, with proper trained supervision, and it would be free. Sadly, this is needed for many chronic mental and physical diseases — and for the aged themselves. But older people are not sexy and so politics – and money – stand in the way of us having a civilized society. It is not because we have heating that we are civilized. It is how we treat our families and each other.
  10. As humans we feel angered and threatened if someone attempts to force anything upon us and will react in any way to show this. Even something that may appear to be a simple task may easily be misinterpreted or not understood by a person living with dementia, we must remember this.
  11. We expect people with dementia and older adults in general to accept a lot of things that we ourselves would not find acceptable.

All survey respondent comments (the most recent appear at the top of the list)

  1. Congratulations for your blog. It is so inspiring … Thanks!
  2. Wonderful survey
  3. Difficult to help people who do not or can not understand what you are doing.
  4. I wish I could have physically continued to manage the care. I am very OFTEN dismayed at the care that is provided at the facility. I am not certain I could survive it!!! Secure unit aides for Dementia need to provide extra patience. Extra training. I can tell the ones who’ve “got it” and they are few and far between. I hope the purpose of this survey is to draw attention to the nursing home/assisted living deficiencies. It’s not unusual in the US to attempt multiple living arrangements before settling on best of the worst. Thank you for your continued care and attention on behalf of all who are still coping, Susan. ??
  5. I am the Primary RPN on a 21 bed secured unit in a long term care facility.
  6. this is a wonderful survey to have you think about another person’s behaviour as normal as your own. thanks for the opportunity to participate
  7. Returning to college in my 60’s degree in Gerontology, learning validation, reminiscence, and the immense value of listening/hearing to quickly assess a situation has been a leading goal of mine to respect an individual that is confused, trying to communicate where words are jumbled. Yes, I do become frustrated – yet never and I do mean never project any ‘unbecoming attitude or behavior’ while on the job. I always say to myself, this person could be my mother a family member or me! How would I want this situation to play out. I share any frustrations that I may have had with a partner…that listens and validations my frustrations, concerns . Each day is a new day that I start with a smile, a pat on the shoulder and positive words to begin my time with a small group or individual in the services that I perform. I feel that I may occassionaly overreact in my personal world to something that I may later wish I kept my cool. Yet this is life and things happen. Our life and world is filled with a mixed back of kioski. Being cognizant of this does put a spin on better behavior in the professional world., and that does work for me.
  8. Watapowpow. Fabulous. Would you allow Handicap-Vie-Dignité to have this sondage translated in French? Plus much…much more re training, etc. Johanne Ravenda
  9. this is amazing, i am sharing this with my nursing staff and colleagues.
  10. Having been trained in Gerontology and through the Alzheimer’s Association, all the training in the world never quite prepared you for the ongoing changes, because of the many different types of dementia, the meds the person is taking,the health issues the person has, as well as the personality of the person. After 7 years and no formal diagnosis, I feel like I am in a boat with no ores, and a major fog just blew in!!! Where oh where is the light
  11. currently taking care of mom, senile, and my husband, who has dementia. No help from family whatsoever
  12. My 85 yr old grandma has mid stage AZ and lives in a facility. I am her caregiver, taking her to appointments,consulting with staff, managing her finances, etc.
  13. Medications given are numerous I have found when refused by patients sometimes more beneficial
  14. I’d never have asked myself the above questions had I not read them here. Yes, certainly, they change my perspective, from that of a caregiver to how people with dementia might think or think of doing. With the best of our intentions and loving care, we never think of what happens when our own minds are blank, lost a sense of familiarity, of security.
  15. As I get older I some times forget and wonder if it is early stage Alzheimer’s.
  16. I volunteer in a nursing home (lifestyle)
  17. my husband has Lewie bodies and Parkensons. I deal with dementia all the time and I worked in Alzhemers ward in nursing home .. 13 years..
  18. Go Sue go! We need to change that situation and lessen the harm made to people with dementia. One thought is anyone might end up with it, and this should push us to make things better before we get to the other side of the fence
  19. I am far from a YES man but all my answers have been affirmative.
  20. I have seen first hand my Mom and other residents with various types of dementia exhibit several of these things. My Mom often says she get so confused. It must be so hard for her.
  21. I would like to see the article you are submitting
  22. excellent survey!
  23. Great questions – puts life in perspective as one of my dementia patients.
  24. We expect people with dementia and older adults in general to accept a lot of things that we ourselves would not find acceptable.
  25. And I wrote a book about dementia and what I learned while taking care of my mother called the Wonders In Dementialand.

  26. I remember clearly the era of re-orientation for dementia and how painful that was. people who cared for dolls and were comforted from them had the dolls taken away- reminders of the days of the week- that was the main conversation. always felt it was more important to connect where they were at if possible, recalled calming my grandfather who was “beside himself” by telling him I had already put the horses in the barn. He was panicked that it was getting dark and they were out and he couldn’t get to them. Took less than a minute.

  27. My Aunt lived in 4 different memory care facilities. The things that I witnessed were scary and it was extremely difficult to leave her. She did live in a private pay facility where she got excellent care for the last 7 months of her life. The regulations allow these facilities to run at bare bones minimum staff and the staff isn’t required much trained. “Personal Support Specialists” are the direct care workers here in Maine. They can be hired right off the street with no experience. My Aunt lived in a memory care facility for approximately 5 months, it was awful. The morning that I went there and she had missed breakfast, so I asked for some breakfast for her, it was about 10am. She was offered goldfish crackers for a meal. That was the tip of the iceberg for me and my family. This was after numerous incidents we tried to work through. We moved her out that week. These places are sadly able to run here in Maine as basically a boarding home. It’s infuriating.

  28. Thanks. You make very good points!

  29. Unfortunately some of these questions are leading.

  30. Very eye opening!

  31. Thought provoking…thank you Would be helpful if you could make the questionnaire something shareable for training sessions…

  32. Well done! Thought provoking! Happy new year 2017.

  33. The questions are frequently murky, e.g., #28, which makes no sense to me. Also, for example, context is not given in #24. If you cooperate when someone suggest you slit your wrists, there is a problem, whereas when the suggestion is, “Put on your seat belt”, it’s common sense that you cooperate.
    Interesting and thought provoking!

  34. Good Quiz.. I was thinking of my mom with dementia.. thanks

  35. Although I answered yes to most of the questions, you didn’t ask if I was doubly incontinent and if I would sit making awful noises for hours and for no apparent reason as my husband does

  36. This is a great reminder thank you

  37. It’s easier said than done.

  38. This is a lovely survey to promote conversation. It would go well with the virtual dementia program where you go through rooms trying to do activities with the “equipment” on that mimics dementia filters.

  39. Excellent survey – this is a survey that should be mandatory for ALL staff in ltc facilities to complete. It’s easy for care workers to view normal reactions as problem behaviours especially when overworked and uneducated. Well done.

  40. excellent survey!

  41. Great questions – puts life in perspective as one of my dementia patients.

  42. Excellent survey – emphasizing that people with dementia are like the rest of us (or we are like them).

  43. Very interesting.

  44. Curious set of questions

  45. My mother has early stage dementia

  46. Makes u think

  47. I see the similarities between my answers (someone without Dementia) and the common behaviors of someone who has Dementia. Very interesting!

  48. very interesting and hopefully make us more aware of how people living with dementia feel

  49. As a dementia specialist, I greatly appreciate this awareness survey…it emphasizes how universal our coping strategies really are; with or without dementia. Thank you so much, Susan!!!

  50. Great questions.

  51. Very enlightening. Made me more aware of the struggles of dementia sufferers.

  52. This is how people with dementia act so we’re not so different although dementia is treated differently

  53. As humans we feel angered and threatened if someone attempts to force anything upon us and will react in any way to show this. Even something that may appear to be a simple task may easily be misinterpreted or not understood by a person living with dementia, we must remember this.

  54. I can see how some of the patients I help look after now feel. Xx

  55. most assumptions about PLWD are born of ignorance & fear

  56. Lots of yesses.

  57. This is such a complicated issue that, like just about everything else on the planet, has to do with money. And the fact that people over 50 are seen as low-value in our society. Ideally, we would have caring homes for people with dementia, with proper trained supervision, and it would be free. Sadly, this is needed for many chronic mental and physical diseases — and for the aged themselves. But older people are not sexy and so politics – and money – stand in the way of us having a civilized society. It is not because we have heating that we are civilized. It is how we treat our families and each other.

  58. Thank you!

  59. Question 28 could have done with an example; otherwise a game changer of a survey! Very well done, in my view. Bill

  60. Thought provoking! A good exercise for carers and Nursing staff.

  61. Very good.

  62. Well worded questions! Mom did from Alzheimer’s so I get much of it.

  63. I have mild cognitive impairment.

  64. My family history suggest that this may happen to me.

  65. I took care of dementia patients for 38 years.

  66. Hope this helps your cause.

  67. I understand the point of this survey.

  68. Excellent point!

  69. Thank you! This survey highlights the human element of Alzheimers!!

  70. The questions gave me a new perspective on what it must be like to live with Alzheimer’s/dementia or any mental health condition for that matter.
  71. There are so many proven evidence-based studies which prove batch living denies the basic rights of the individual. Yet we continue to build Communities’ where people are placed together based on two insignificant factors age & undesired disability. Dementia villages are the new acceptable forms of batch institutionalised form of living.
  72. poor carers do things to people – good carers do things with or for people
  73. I argue but never swear or curse at people.
  74. Excellent questions which made me think, some questions were easier to respond to than others.
  75. Many of these questions require context, particularly in the realm of restraints and confinement. Lack of insight into the reason for restraint or confinement exists in dementia and other illnesses or deficits as well.
  76. Yes I am normal and if I had been labelled as having Dementia I would still want a life and be part of my own relationship in my care. For people to understand and care for me as a normal person, rather than leave me to die alone frightened and scared after being left alone in my dementia fog because they do not understand me and the reasons for my frustrations
  77. Clever survey!!
  78. Hmm, I’m a psw and see where this is going… Well played
  79. Very interesting survey, with very pertinent, thought provoking questions and hopefully insight for others into those who suffer (individuals and their families) with dementia
  80. Great Survey!
  81. Interesting survey…makes me think for sure about how Dementia is treated…thanks for doing this as I am in that age group…
  82. This survey really makes you think about how a person with dementia could be feeling and why they sometimes resist what you are trying to help them with. Getting confrontational with people doesn’t help. As a carer YOU have to change your mindset.
  83. Too many vague questions
  84. Great survey. I will share with my support group.
  85. Wow. Great way to reframe “problematic” behaviour.
  86. Some questions where ambiguous. I think I am dyslexic
  87. Fascinating to consider that we pathologize behaviour in persons with dementia that we accept from ourselves, even if it did compromise our safety or dignity. I know from personal experience it is tough to be a caregiver, but it also strikes me that one of the biggest problems we have with people with dementia is their non-compliance with what we think is best. Interesting mirror held up with this survey.
  88. So why should people with dementia be expected to behave otherwise? Rhetorical question. Good survey.
  89. My mother has it and my dad had it!
  90. Excellent!!!!!!!!!
  91. Normal responses…… we all experience…… Not BPSD!
  92. All of these questions could describe me now and I do not have Alzheimer’s or dementia or my mom who died of Alzheimer’s. I hope that people will learn from this to treat those with Alzheimer’s with respect and dignity.
  93. I think Q12 needs a “don’t know”.
  94. High fives for this survey. Sorry i didnt see it until just now. Sharing. Peter G. Big hugs
  95. I was a caregiver for husband who was confirm with Alzheimer at 48 yrs young. Took care for him for 18 yrs. He passed 2015.Am coping day by day.
  96. Very thought provoking. Good luck with the research
  97. WOW! Susan, I need to share this. Opened my eyes and made so much sense. T.K.
  98. Good questions. I realize that those questions approach behaviors perceived by someone with Alzheimer’s Disease, an how we would behave in front of them… and we woukld do exactly what they act. Congratulations.
  99. I find some of the question very general in nature, such as “do you ever complain”? Well everyone complains about something.
  100. Eye opening…
  101. What an interesting survey! Has me thinking.
  102. This is a very clever survey, as it’s making you think of your behaviour when in fact it’s actually relating it to individuals with dementia and how they feel when things are opposed on them without any form of explaining and being holistic towards them as a person rather than the disease it’s self. I work in dementia and have had many a time pulled someone aside for not recognising what the dementia sufferer is going through, rather than how quick they can get the job done
  103. I work in long term care as a R.N. I see dementia daily, and have infinite patience and caring for all of them. I’m not perfect at home, but try to be the best part of me at work.
  104. Great survey. I will share with y support group.
  105. As someone who works with people afflicted with alz and dementia, in answering these questions, and most of them were yes, I kept thinking of instances when the seniors I serve, exhibited these behaviors! Interesting. I’d love to see what is derived from this survey. Thank you
  106. What is the meaning of the surevey: to create more comprehension for a person with dementia? I think there are far more better ways to reach than a survey. What do you do with the results?
  107. I have answered yes to many questions based on how I was when I had my 2 strokes in Sep this year.
  108. Interesting questions
  109. All staff in healthcare should have to do this survey
  110. This would be a good to give to the care team as a group session .
  111. Good survey!!!
  112. Having cared for my mother with Alzheimers,and having 2 sisters with early onset Alzheimers I believe I see where you are going with this survey.
  113. Both my parents are living with dementia
  114. Not yet….but my mom does, and I worry that it is coming my way.
  115. Perhaps I do! Answered many yes’s!
  116. Took care of my husband at home til he passed…Had AZ diagnosis…Lost some friends due to their not understanding this disease.
  117. Look forward to the results. The questions were very insightful and made me reflect how residents in memory care feel.
  118. Father has Alzheimer’s
  119. Strange questions- so obvious that most people will answer yes- the point seems to be that dementia or Alzheimer’s is just part of normal behaviour.
  120. Best of luck with your projects and endeavors! And a Merry Christmas to you! Take care, Dani
  121. I don’t understand the point of this survey. The questions are all very pointed questions that talk about specific behaviors common to both caregivers as well as dementia patients and seem to want to equate some sense of “normalcy” to them, as if the idea was for the person without dementia to have a sense of sharing the experience of the person with dementia. This is really not possible. Not really. Those of us without dementia still have our ability to reason and think logically, and cannot truly understand what it’s like to not have that ability.
  122. Good way to get through the message that expressions of feelings in persons living with dementia are normal reactions to what they perceive is happening in their reality. We just need to find out what they are trying to tell us.
  123. Good way to get through the message that expressions of feelings in persons living with dementia are normal reactions to what they perceive is happening in their reality. We just need to find out what they are trying to tell us.
  124. I have a mother who has Alzheimer’s Disease and am interested in where this survey is leading.
  125. Scary how many behavioural traits I said yes to…
  126. We need to all understanding that people with dementia are firstly people. Their behaviours only appear bizarre because they can make no sense of the world around them. Patience is what is needed – that and an awareness that people with dementia are not a threat, they just need to be treated as vulnerable people. Some treat dogs with more compassion. I could go on …!
  127. Am I human – like the rest of everybody? YES!
  128. Great questions to shift our perspective on mental illness!
  129. The most important to be tolerant and sympathetic…. whatever age or ..
  130. That really made me think…..thank you.
  131. Very interesting.
  132. Most of these require a now and again or a how often as there are ‘normal’ levels of behaviour
  133. I know exactly where you are going with this as I ask the same question amazing Susan – we ALL exhibit behavioural expression and cognitively aware people more than people living with dementia – it is our attitudes and responses and mismanagement in not meeting the needs of others that trigger most behavioural expression. Good call. I bet you know who this is – lol.xx
  134. Very thought provoking. I kept thinking of my Nana when she was diagnosed with alzheimers. This puts a new perspective on things. Glad her careworkers were so supportive, and mostly our family was patient.
  135. Thanks for doing this.
  136. A very thought provoking and interesting survey.
  137. I see what you are getting at.

 

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