Behaviour Management vs Staff Management

DPP Symposium, Perth 7 October 2014

DPP Symposium, Perth 7 October 2014

Managing ‘challenging behaviours or ‘behaviours of concern’ or managing the symptoms of dementia is a regular topic at conferences and forums for major discussion, often one that drives me to distraction!

After attending a forum for nurses and other health professionals in clinical practice recently, where at least half admitted to believing it appropriate to give people with dementia psychotropic drugs to ‘manage behaviours’, was extremely distressing and worrying.

Even though it is not considered best practice to do so, and even though a diagnosis of dementia is the one contra-indiction of prescribing psychotropic drugs – unless there is diagnosis of mental illness such as schizophrenia or bipolar disorder – many clinicians in the room of approximately 100 said it was appropriate to do so.

As a consumer, I find it wrong there is a whole educational organisation devoted to managing ‘Challenging Behaviours’, with lists full of disrespectful words and term, and whole chapters or sets of guidelines for how to manage them.

Before I was diagnosed with dementia, when I went walking, it was called walking, and even sometimes wandering, if I was simply walking to get some fresh air, or walking for exercise, or walking because I was bored, or walking to the shops, or walking to the sake of walking… now I would be labelled as a wander, and the ways to manage it would more likely be, according to many of the clinicians recently, with drugs.

People with dementia are not wanderers, absconders, screamers (yes, I heard that recently), poor feeders, feeders, aggressives, or not all there’… we are PEOPLE, and sadly many have completely forgotten the ME in deMEntia.

Personally, I think the people who need managing most often are the staff of those people with dementia in their care… perhaps this will be the topic of my PhD.

I presented at a symposium in Perth for Alzheimer’s Australia WA last month, and the day was perfectly titled ‘The ME in Dementia’… it is time others start to focus on that too, and stop seeing us as behaviours. The Alzheimer’s Australia full language guidelines also support this.

Dementia Alliance International produced t-shirts earlier this year, with the phrase, also in the background power point slide in the image above, saying:

DAI You Tube Banner

27 thoughts on “Behaviour Management vs Staff Management

  1. I agree wholeheartedly with this piece. As a dementia consultant I am constantly appalled that those who describe themselves as caregivers have such a lack of understanding, compassion and empathy for those they care for.

    It is totally unacceptable to drug people because you do not understand them and this is something I speak about very strongly in all my educational sessions. What disturbs me even more is the number of caregivers and some Doctors, who actually think this is an appropriate strategy. Not only does it devalue the person with dementia as a human being in their own right, but it destroys quality of life and I personally consider that type of chemical restraint elder abuse. Of course there may be situations as mentioned when there are other underlying issues that may require medication but it should never be misused.
    This is not caregiving in the true sense of the word.

    Many caregivers need to look at themselves because due to their inability to relate to those they care for, they are actually the triggers to stress related responses that they then label as ‘aggressive behavior’, when in reality the person is just communicating to us that we are NOT meeting their needs. Would not we all respond in that way if we were dissatisfied????

    As for ‘wandering behavior” , I always suggest we look at ourselves once again. I can go for a walk for hours and window shop aimlessly and no one says I am exhibiting a behavior of concern.

    The double standards and unfair judgmental attitudes must stop so people living with dementia can continue to live their lives without these types of labels.

    Furthermore dementia does not mean losing ones humanity – as people in your own right you have the right to stand up and stay stop this, and those caring for you should be your voice if you cannot.

    Cheers and smiles.
    Thank you for giving us the perspective that many people in the care giving industry often need reinforced as often as possible.

    Leah.x

    • Thanks Leah… I read this out to my husband, and he wondered if I had helped you write it! OMG he said, don’t put us together in the same room, it would be dangerous!!! Although I would quite like to join you as a co-presenter is the opportunity ever arose.. thanks so much for caring about the ME in dementia xox

      • Hi Kate,

        I am so glad to hear that – you have made my day. 🙂

        I had a laugh when I read what your husband said.. Lol. It is certainly one of my many “soap box” rants about valuing and respecting people – if anyone brings up the topic of chemical restraint I do become very vocal. Maybe that can be scary to those who disagree with me or argue!!!! Baha.

        I don’t think it would be dangerous at all if we were together in the same room – I think it would be totally inspiring and exciting – your husband may not get a word in though, so he would need to watch and absorb the passion!!!!!!

        I would be very honored to co present with you any time Kate, if there is ever an opportunity. I believe we would have an absolute blast together and throw it out there to everyone a ‘real’ philosophy of care, dispelling all the dreadfully stereotypical myths that hound people living with dementia.

        Presently I am completing my business website called “Uplifting Dementia” and as soon as I have finished it I shall send you the link. I have had my consulting business for years but it has taken me a while to get with the programme regarding the world of technology.

        And I will always care about the ‘you’ because you are the ones, who, every day, make me want to strive to
        do whatever I can to create change.

        Cheers and smiles.

        L.x

  2. What a great topic for a PhD. It is very much needed research.
    One of the issues with the use of chemical restraints is that the restraint is hidden. Only those administering or close family know what is going on, and perhaps close family don’t even know. To the casual observer it would appear that no restraint was in place and that everything was quiet and “under control”.

    • Thanks for bringing up that very imporant point Mandy… it is often hidden, and not even the family know it is happening… even though this probably means the doctor and staff are breaking the law by not getting permission in the first place!!! Happened to my father in law all the time…:-(

    • Mandy you are so right – families often are totally unaware and staff just take the first option, as well as being conditioned to react this way often, and this is why I believe it can be labelled as abusive. Not only are people quiet because they are drugged to the eyeballs, (which is not a life!!!), many family members think it is normal to medicate their family members due to their own ignorance, and their belief in the medical system. I always wonder would they allow teachers to drug their kids for instance if they were being naughty?????

      This again is the catalyst to why some families think people living with dementia just sit around in a chair, staring vacantly at nothing all day – its not the dementia that causes this, it is the sedative affects of all the drugs that are given to them. They are effectively seeing what could be the continuation of a joyful and active life being destroyed right in front of them.

      The research is so not a bad idea – I have already completed my Masters and my thesis was published in regards to the use of dolls as a therapeutic tool to meet attachment needs – the joy it brought to some individuals, (not only those living with dementia) was mind blowing, and totally rubbished all those disbelievers who again judge everything from their own rigid cognitive viewpoints. The lady I gave the doll to had advanced Alzheimer’s and hadn’t spoken for 2 years. She was a sad, tearful lady who was always in a state of panic and despair. When we gave her the doll she took it in her arms, looked up and spoke, – “This is what makes life beautiful”. It was a defining moment.

      When and if I do my PhD this would be something to consider definitely However, I do still conduct a lot of evidence based research for myself, and others, and have also just completed one for Alzheimer’s Australia, so this could be a topic I may consider. It doesn’t even have to be for a PhD.

      I do enjoy having an area that I can research, that dispels all the negativity surrounding living life with dementia.

      Something to think about……………………………………

      Thank you for the suggestion.

      • More fab conversations happening here… thank you ladies. Oh, and you have enlightened me re the doll therapy, as I have not seen or heard many good things about it… xox

      • Hey Kate,

        There has never been much positive press about dolls, hence why I chose it as a topic.

        I wanted to show people that no matter what we use, if it works in relation to a specific individual, in allaying internal suffering, then we should use it – even if it is a doll. If it positively improves a persons life, then not using it could be considered neglect.

        As we are all completely different from one another, who is to say what will not work for one person will potentially work for another, until we try?

        Just because I don’t really like gardening, doesn’t mean I should take that away from someone who is happiest in the garden. I really do not have that right.

        Plus when I did the research i also spoke to many older people who do not have dementia – loads of older ladies actually collect dolls, many love them still because they bring back memories of happy carefree times. Play is also something we all forget – we should never lose our inner child – how boring would we be??? Lol.

        I don’t really like dolls myself but can appreciate it for those that do.

        The funniest of all is when I take my doll to a conference when I speak, and I hand it round to all the professionals in the filed who think its ridiculous. Men and women all hold it like a baby, and actually rock it, and pat it, and smile, without even realizing. Its brilliant.

        Loving this conversation.
        xxxx

  3. ……..Hi Kate……yes, there is a strong perception out there that dementia means madness/insanity…so what would you know……sometimes I wonder how you maintain your sanity……you are a breathe of fresh air….

  4. Well said Kate, as always. I am saddened by the reality that you speak of. The workload on this score feels like bailing out the Tatanic with a thimble. So I concur – use it for your PhD – you’ll surely have plenty to fuel your fire and you’ll have much support from us all 🙂 x

  5. Take heart Kate, there are some of us out here working hard and trying to make a difference. Personally, I believe you can have all the conferences and seminars you like but, the people who are at the ground roots level of care are not usually the ones attending them and I wonder if it would be better to put the money spent on seminars etc. into spending time with care staff and really teaching them how to CARE for people no matter what the issues are!!

    • Hi Annette, and yes, I know there are a lot of you either doing, or wanting to do the right thing, but sometimes funding and low staff levels means you barely have time for even the basics… and I totally agree, I wish more money would be spent in ACTION, instead of whole day forums that seems to achieve such little change in the sector… just a day off the floor for many I suspect. Aged and dementia care staff are usually understaffed, definitely undepaid and undervalued, and I do value what you are doing

  6. Kate, My husband and I were invited to view the last presentation at a conference called The Me in Dementa/
    It was strictly scientific and when I posed the question of (who was the speaker with dementia( shock and surprise was the preamble to – this wasn’t for those with dementia……..what>>>>>>

    • Yes… definitely so often the norm still. As if we would be attending conferences about gay, disabled or Indigenbous people, without them presenting for themselves????? as you say, what the ***

  7. Hear, hear, Kate!! I loathe the dependence on “chemical restraints”, I loathe the attitude of some staff that “there’s nothing that can be done”, I loathe the labels that are carelessly assigned to people….
    But I applaud when I see people coming before their diagnosis, when I hear people spoken of with dignity and respect, and I silently cheer when I hear staff questioning their own behaviours and work practices, rather than placing blame for a reaction on the person living with dementia. xx

      • Hi Kate,
        I was talking to a group of carers about the power of language.
        I asked my students to google the Images of the words: Dementia Demented and Dementing.
        Then I asked how many people do we ever refer to as Cancered or Cancering? , Bronchitised or Bronchistering. So why are we using such perjorative terms about dementia?
        I suggested that as a start -in the workplace they can begin to question the terminology used by themselves and colleagues.

        Cheers
        Chris

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