Inclusion or exclusion of people with dementia?

WebI was in Sydney last week for the HammondCare RiskyBusiness2 conference, and on Friday I co-presented with the vice chair of the Alzheimer’s Australia Dementia Advisory Committee (AADAC) about the set up and activities of that committee. My other presentation was on models of care and ways of keeping people with younger onset dementia employed. If I have the energy, I’ll definitely write a more fully reflective blog about the conference at the end in a few days, but as I’ve not even done that for ADI yet, the chance is a little slim! I do however, have a few thoughts and comments to share.

My initial issue with conference is that it was themed, “This time it’s personal”. I am not able to see how it can it be personal for everyone, if they don’t have anyone with dementia as an invited key-note speaker, if it doesn’t treat and include all the stakeholders in the same way. I discussed this point with the convenors at length some time ago, who said they completely agreed with me, and in fact agreed with me on this point over two years ago, and yet they still did not see it as important enough to include a person with dementia on the plenary program. The second issue I have was a  widely promoted “High tea” for carers, to kick off the conference, and nothing over the course of the conference for people with dementia; once again, it is personal for them, but not for people with dementia.

As Chair of AADAC, I feel a deep responsibility to represent the ever-increasing thousands of people living with dementia in Australia and around the world, to fight for equality and our basic human rights. This includes… equal inclusion at conferences that are about us, when they are conferences that are promoted to an audience that includes us.

During a committee meeting for another conference earlier this year that I was told not having people with dementia as plenary speakers was because they don’t have capacity. I replied with a ‘thank you for the insult’, and the suggestion many of us still do, even though we may have changing capacity and disAbilities that need supporting, in the same way as any other disabled person.

The ‘fight’ for our basic human rights goes on, and the conference this week was no different. I will speak up, again and again, until people without dementia actually bother to not only listen, but change their actions.

My question today, is does only including people with dementia in a concurrent session of a conference fully include us, or does this in some way go towards continuing and exacerbating the stigma, discrimination, isolation, loss of identity and self esteem, and exclusion of people with dementia?

Please give me your thoughts on this… I do know if I was writing a blog about conferences for Indigenous Australians, the gay community or the disability sector, I would not have to ask this question at all, as not only would they be included at every level of the event, they would be involved in the organisation of the conferences about them.

33 thoughts on “Inclusion or exclusion of people with dementia?

  1. Great blog Kate. In each of the last two years I’ve presented at conferences to talk about how a group for men experiencing younger-onset progressive neurological disease operates. At each 2-day conference, mine was the only presentation to actually include the voice of people experiencing dementing disease – once by having group members to take the Q&A after my talk, the other by including video of member comments and observations. Like you, I find it jaw-dropping that conferences don’t actively include those whose interests are ostensively being served. Your analogy to the LBGT fight for representation is apt. I fought that battle thirty years ago here in NZ, and I hope that it won’t take so long for those with neuro-disease to be equally included in determining their own futures.

    • Hello Howard, thanks for joning the converstion here.
      Wow… equally included in determining our own futures… now that is something novel and new!!
      I suspect it is going to take some time to get eveyone on board that we have rights and a voice; the hardest nuts to crack are in fact the ones who should know better.
      Maybe I’ll see you in Novembe at the conference in Rotarua??

  2. My comments are from a person who is new into care and support services sector coming from an IT business project management background. About 10 months ago I started to work for The Family Care Trust charity who provide care and support services. I have been using my time since then to learn as much as I can about the services that we provide of which dementia care and support is one. My personal and work experience of dementia is limited.

    My view is that if discussions and decisions are taking place about dementia it seems so obvious to me that people with dementia should be included at all levels of these discussions and be listened to at conferences, committee meetings etc. As Katie has already mentioned a person with dementia may have a changing capacity, so this should be acknowledged and if required support should be provided.

    Kate I fully support your fight for basic human rights and I want to let you know that at I am one of many people who are listening to what you are saying, even though I do not have any power or influence to make decisions. You are making progress in spreading the word and educating people about dementia. People with dementia should have the opportunity to live life to the full in whatever way that they want to.

  3. My comments are from a person who is new into care and support services sector coming from an IT business project management background. I started to work for a care and support service charity about 10 months ago, I have been using my time since then to learn as much as I can about the services that we provide of which dementia care and support is one.

    My personal and work experience of dementia is limited. If discussions and decisions are taking place about dementia it is obvious to me that people with dementia should be included at all levels of these discussions and be listened to at conferences, committee meetings etc. As Katie has already mentioned a person with dementia may have a changing capacity then this should be acknowledged and if required support should be provided.

    I fully support as you said your fight for basic human rights and I want to let you know that at I am one of many who is listening to what you are saying, even though I do not have any power or influence to make decisions. You are making progress in spreading the word and educating people about dementia. People with dementia should have the opportunity to live life to the full in whatever way that they want to.

  4. Completely agree, sometimes it appears we are making progress when we hear and read about inclusion and in my field of Pastoral Care in Aged Care the “buzz” words are “person centred care” but if we are not willing to talk and listen to those who we are caring for then the idea is futile. It is the same as not including people with dementia in the conversation about their well being and future. Last nights Australian Story on ABC may help the conversation to continue. thanks for your posts
    .

    • Thanks Paul… it is such an important conversation. To not have the very people with the disease in the centre of the conversations is offensive and wrong. Christine has been the trail blazer in Australia, very big footsteps to follow, but others with dementia must, or what will happen when we die?

  5. Reblogged this on apjnewman and commented:
    Hi Kate I was also at the ‘Risky Business’ conference and yes I absolutely agree. I listened to your inspiring and emotive presentation in the concurrent session and I again want to thank you for that. I have worked in adult mental health and criminal justice since I was 16 and still at school(!), never bothering much about a disease I considered to be an older persons issue that someone else could worry about. Considering that in the 90’s in Scotland student nurses’ introduction to dementia involved a stint in the ‘psycho-geriatric’ ward (hardly appealing to a naive 18 year old looking to set the heather alight! I’m now 42 and moved to Australia almost 3 years ago. In doing so I sought out a new challenge in aged care and I certainly found it! Never did I think it would be so difficult to give someone what they ask for. The concept of risk seems to have spiralled to the point where people are locked up in boxes, often referred to as ‘dementia specific’ units which, if it wasn’t so sad it would me laugh. Men and women are held ‘securely’ oftentimes with no or limited access to garden areas but hey, huge glass panelled sliding doors showing off that pristine bbq area and pretty pergola. As I mentioned to you before my big issue is the lack of touch and conversation between care staff and the people ‘receiving’ the care. It seems limited to the provision of care tasks. I often think if I was the recipient of any physical care that involved taking my underwear down to sit on a toilet I would at least want to know that I wasn’t being seen as a task. I would want to know my carers name maybe. I would want to feel comfortable and safe-I don’t think an unfamiliar person putting their hands on me to remove my undies is going to effect that! Basic training in how to respectfully and meaningfully interact with others is overdue and maybe Maslow’s Hierarchy of Need could be plastered up in a few areas to serve as a reminder that we ALL have the same basic needs. Anyhoo you got me fired up at the conference so I’ll be keeping you posted on how my renewed energy has paid off! Again, thank you. I really appreciated listening to you sharing your own experience.

    • Upon re-reading my previous post I should add that I have also witnessed many examples of good quality care since working here. I simply find it frustrating that care in general tends to follow the ‘task-focussed’ route unless you have strong leadership in place to encourage interpersonal relationships- Inclusion!

  6. You’re very right Kate – without you pointing out these obvious things …… hang on, you pointed it out 2 YEARS ago and still they didn’t learn because nothing had changed by the time the conference was held.

    And having people with dementia in another room, concurrently, would only be good if the findings were then presented to the main group by a representative. so they’d have had to had table discussions by the participants, then someone collating the results and presenting them. I bet that isn’t done very frequently!!

  7. Yes you are very right Kate, I have attended a few conferences around the UK to date and I am appalled at the lack of speakers who have dementia, the newest thing to include us is an invite to attend so they tick the right boxes. We need to be able to speak, be heard and more importantly, be listened to !

    • So sorry it is the same in the UK as in Australia… mostly tokenistic and patronising if we are really honest!!! ADI2015 is going to be different, which will be brilliant… even though it will also be ABOUT TIME.

  8. I come from the scientific, rather than social care, side of dementia research and have attended over a dozen major, international neuroscience conferences focused on the efforts to alleviate the symptoms or progression of different dementia subtypes (particularly Alzheimer’s disease). I cannot recall a single session where an individual with dementia was asked to share their thoughts with the audience. Other external guests were invited – I once heard the Dalai Lama discuss his thoughts on meditation – but never anyone living with dementia. This situation persists to the present day. Even at the AAIC 2014 primary care pre-conference the session remains clinician-dominated: http://bit.ly/UWDfii.

    That is not to say that people with dementia are excluded from such conferences. I often met patients and their families amongst the poster sessions – the burning focus of their personal interest putting my professional attention to shame. In fact one of my fondest memories is a lunch I once took with a charming man from Denver who seemed calmly accepting of his future. We spent half-an-hour or so chatting during which he recounted a complex story about how he once caught a bear-cub stealing from his refrigerator. In order to do so it had needed to tight-rope walk from the branches of a nearby tree along the railing of his (secured) balcony. He was never so surprised as when he turned the kitchen light on at 5am to find the bear standing there – paw on the fridge door handle. He said that experience had given him some very interesting thoughts on ‘capacity’. I am absolutely sure that conference attendees would much rather have listened to him extemporise than me!

    Now it would be facile to for me suggest that highly technical conferences are necessarily the best places to try to bring together basic research scientists and patient groups. What worried me though is that many colleagues within the scientific community (myself included) actually have very limited concepts of the patient experience – something that should surely play as much of a role at the initiation of research projects as it does at the clinical stage. For me, this is arguably an example of where inclusion of people living with dementia would be to the benefit of all.

    • Thank you for joining the conversation here, and for your very thoughtful response. I love the bear story… I also suspect if bears could present at conferences rather than just sneak into the refrigerator, they would be chosen over people with dementia. If clinicians and researchers had a more open mind like you, and the owners, CEO’s and finance managers of dementia care providers learned more about our real needs, rather than just assuming what is best for us, they may actually improve our lives.

      My reason for continuing to attend and present at conferences and other events is because I am tired of listening to people without dementia, tell me how it is for me, and what is best for me.

    • Excellent comment Adam. I must admit that when I was presenting my findings on cognition in frontotemporal dementia in Miami in 1999, I didn’t bat any eyelid that there was a complete absence of individuals for which this finding might be relevant. When I used to present inpatients with cognitive neurology presentations at the National Hospital for Neurology and Neurosurgery, I think they were invited to attend the discussion, but the clinicians were mindful in case the alternative differential diagnoses were potentially distressing (and thus avoided distress). From what I understand this was not such a conference involving technical neuroscience, but still a detailed description of ‘risk’. In fact, I have been to a conference where the risk posed by people like me, a solicitor in training, was discussed by my current regulator, the Solicitors Regulation Authority, and I think the organisers of that event found my experience as a regulated individual interesting. And why wouldn’t they be? My regulation is worth an autobiography in itself Adam!

      • And an excellent response Shibley, thank you. When I started nursing, prior to commencing my formal training I worked as a nurse aide (probably similar to what is carer today) and we focussed on the people we were assisting, including their emotional needs. When my formal training commenced, we spent most of our time focussed on the diseases or illnesses, more than the person… and I see that this is much more the case with university trained nurses.

      • Thank you Shibley – I agree with all your points. ‘Risk’ aversion on behalf of conference organisers is perhaps one of the main issues. No-one wants to be responsible, or worse liable, for causing upset either to the audience or the speaker. If it’s a scientific conference, much safer to stick to technical details. Hence the scenario you describe where ‘real’ warts-and-all neuroscience is generally communicated only to a specialist audience. The public (including patients) are left to rely on inherently biased company or university PR releases. I would argue that the value of such media communication is often LESS than a layperson would encounter at a technical conference. Worse, there is limited opportunity for dialogue to enhance understanding on either side of the divide.

        The lack of active inclusion of interest groups in scientific conferences is a problem for technical communication in general. A problem that extends way beyond the interests of patients. Would someone attending the G7 dementia legacy event have been left with a true picture of the current state, direction or prospects, for dementia research? I would argue not and, noting your own comment, I suspect you’d agree. This is concerning given the event’s international profile. Simplification is important to marketing ideas, but only so far as that simplification clarifies concepts. Where it distorts them to the point at which even specialists are unclear as to the output, there’s a problem. Much better to simply buy a book like your own. If readers don’t always understand every passage, so what? It remains infinitely preferable to perfectly understanding an incorrect concept.

        Why does this really matter? To illustrate that it’s probably good to use a real-world example. The FDA recently approved a form of inhalable insulin for diabetes known as Affreza, which has generated much discussion. Seems a great idea doesn’t it, getting rid of insulin injections? On the surface, yes, but Pfizer have already been there with a similar drug Exubera. This was a commercial disaster for numerous reasons: http://buswk.co/TtWI8N. These could all, however, be summed up by one phrase “No-one asked the patients what THEY wanted”. I don’t believe that inclusion is a necessity of political correctness. To my mind it’s a necessity full stop – for commercial as well as ethical and social reasons.

      • Another interesting comment, thank you Adam. The conferences I regularly refer to are not purely scientific ones, but in fact most often promoted to carers and consumers as well as researchers, dementia service providers and others… they want everyone’s money to attend…

  9. Thanks Kate for flagging up this concern.

    I went to the website you cite for the conference.

    In this context, the sentence “Risky Business 2: this time it’s personal! will consider the future that we are shaping for people with dementia” took on a different meaning. This sentence implies a clear division between people who have received a diagnosis of dementia, and those who haven’t.

    I have seen other visions in other contexts. The #G7dementia legacy event again mentioned the vision for a cure for dementia by a certain date, meaningless in itself in that there are many many causes of dementia. But it is still unclear what global marketers of this idea precisely mean? Dr Richard Taylor has mooted the idea of a ‘vaccine for dementia’. Are we now actively putting resources into research and development of Pharma rather than helpful ideas for people living well with dementia? The answer to Helga Rohra, described in Beth Britton’s blogpost for Huffington Post, where Helga asked specifically about living well with dementia was clearly not fit for purpose in my view.

    So there is a growing body of anecdotal evidence across many jurisdictions that people with dementia are being invited to events effectively to market them, although I do not accuse the organisers of this event of letting this happen here (I was not at this event.) The statement about capacity is simply weird – one can only assume it was given by somebody who didn’t know what he or she was talking about and therefore ultra vires (rendered meaningless by the lack of authority of the person making the statement). Capacity remains a delicate legal issue in my jurisdiction, England and Wales, but certainly our parliament did not intend capacity for be a weapon AGAINST people with dementia. Whilst capacity can invoke protection issues of those people at threat of being abused, and this is not unique to dementia, the position that everyone has capacity until proven otherwise (in my jurisdiction).

    And the point you raise finally about stigma, discrimination, isolation, loss of identity, loss of self esteem is spot on of course; totally consistent with your articulation of ‘prescribed disengagement’, which I strongly recommend.

    • My dear friend Shibley, Thank you for your considered and thoughtful reply to my blog and my question. The notion of capacity, as a weapon against us, is clear, and being used against us is extremely unhelpful and discriminatory. My frustration continues to be, how is it that they, as Richard Taylor said below, get “it” when talking to us, but then completely ignore it afterwards. I love you too and wish London was a little closer too! Kate

  10. How disappointing – have these people learnt nothing? I would have assumed that in 2014 an organisation like Hammondcare would have insisted that people with dementia be included at all levels -and not ‘lip service’ or token inclusion, but involvement commencing in the planning of the program and its speakers and most certainly as plenary speakers. If the person with dementia, as with all prospective presenters, do not want to participate for any reason, then it is up to them to accept or to decline. You have every right to have felt felt insulted at their comment that people with dementia would not have the capacity. Don’t give up Kate. I am aware you have a lot on your plate, but clear, passionate voices like yours are hard to find and are gold. Take care of yourself.

    • In fairness to HammondCare, they did not comment about capacity (or lack of), that was another person who is a world expert, and I corrected that person. It is comforting to know others see it as exclusion of people with dementia though, thank you for sharing your thoughts. Lots of hugs, Kate x

  11. Hello, when you find why people who should get “it,” are exposed to the what, why, how, and when of it and still don’t seem to get “it,” at least for no longer than the few minutes it takes them to tell you they finally got “it,” why you get this figured out, and most importantly when yo9u figure how how to keep it from happening over and over again, please let me know. I have been frustrated by this fact of life for more years than it takes for good port to mature. There is no use trying to speculate why this dynamic is so embedded in the closed minds of those who are supposed to have spent their professional lives trying to understand us and enable us. It is really their issue to engage, something we can’t obviously do for them. At best we can remind them of their deep and abiding blind spot to “it” – the fact that folks living with the symptoms of dementia are not fading away, or whole human beings, deserve the same respect and enabling support as we be offered to anyone elses in society living with a disability, not of their own making.. In fact even if they disabled themselves – shot their foot off, drank too much, became addicted to drugs, lost their hearing because of a misspent youth listening to music too loud for the human ear to absorb without damaging itself, and the list of disabilities goes on, as does the public/private effort to engage the disability and not judge the person.

    Discover, invent, stumble across the cure to this human weakness – drop me an email and we will go on Oprah here in the U.S. of A, I don’t know her counterpart in Australia, write a book, become rich, famous and beloved for saving professionals from themselves. Richard

    • Well said my dear friend! We don’t have an Oprah equivalent in Australia, so perhaps I’ll just have to come to the US of A with you!
      If I ever find how to stop those who are meant to be enabling and supporting us from stigmatisoing and discrimianting against us, and help them to get “it” for longer than when they tell us they get “it” I’ll definitely let you know. Onwards and upwards. I’d like to say about now, I love you very much, and wish we could get together for a real cuppa, not just an online chat! Kate

  12. Well said, Kate. The European Alzheimer’s Conference last year seemed very good in this very important respect. I am really disappointed that you can’t be with us for the 2014 conference in Glasgow. And yes, we must get round to writing blogs about ADI. I have one or two in ‘drafts’ 😉 xox

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