Paying for the expertise of people with dementia

UnknownAs it is Dementia Awareness Month, Day 10, and I am publishing two blogs per day, one here and one for Dementia Alliance International, which is hard work, and coming up with anything to blog on a daily basis is challenging! So feel free to send me images or quotes or ideas, or even by joining the conversation on my blog, kind or otherwise. The confronting ones usually give me ideas and topics to think and ultimately, to write about. It never hurts me to think about things differently, and there have been many times, I have changed my thinking, my actions or my words, because someone has disagreed with me or suggested I see it another way. No one is ever always right or wrong, we mostly act in the world, based on our own personal experiences.

A dear friend of mine, Shibley Rahman sent me this quote I have featured here a few days ago, and it has inspired a few words for this blog today. People with dementia are finding this out in droves, as the whole dementia sector wants to ‘engage’ with us, to steal our thoughts and expertise, but not employ us or pay for this expertise.

“Engaging” with us, helps their professional profile, and their business image and bottom lines, and it helps their funding applications, as most of their applications would not be accepted without including us in some way.Generally speaking, it is not yet a win-win situation.

Most of us don’t even want to be paid, we speak out to help improve the lives of others living with dementia, although every other consultant ‘engaged’ does actually get paid. It would be supportive and respectful, if you ‘engage’ with us, to support your own work, including asking us to share our knowledge and lived experiences, to at least donate to our chosen charities. Mine is of course, Dementia Alliance International. In fact, if you find this blog helpful, I would love for you to donate there.

And finally for today, as the late Dr Wayne Dyer said many times;

This is my way. What is your way? There is no right way.

25 thoughts on “Paying for the expertise of people with dementia

  1. Kate you suggested some blogging thoughts re- Dementia awareness? I am an obsessive researcher re-Dementia’s. I held a “Dementia” education in our Casino village with the Dementia social worker here.
    NO person in the 100 attendee’s understood the types of dementia’s. After the event a friend of mine from the village came to discuss his concerns about a lady in her late 50t’s that he was now understanding that her personality and behaviour changes and personality changes were a concern , re her placing herself at risk being a woman living on her own, and her over friendly gestures with the males within the village. He had been her friend for a few years and had been noticing changes that shocked him, questioning Why? After the meeting he came to discuss with me what he should do, as she was not aware that she had changed at all. I advised him to take her to our dementia specialist in Casino, which he did. she was diagnosed with Frontotemporal dementia and soon after admitted into a care facility. For her own safety and well being. she died the following year of that illness…Due to so many people most I have ever known, do not understand the different type of dementia’s, their causes, the known ones especially, Alzheimer’s- amyloid plaque/tau wreathing with in the brain disconnection neurons etc cell death. Vascular/ Lewie bodies/Creutsfeldt-jacobs/Bensons . They appear to be the most presented at the conventions. BUT the presentations do not give the clarification/education about how each type impact within the brain, and the impact it causes in its symptoms. People do not understand the brain lobes that control our brain and physical function when cell death progressively moves through our brains we cease to function as we did, or have the control we once had over ourselves. This education is what is needed.. Then people with education will have insight of recognising a freind/family early to get help.. Just as my friend did after he received enlightment. bout this disease…. This type of education is” dementia awareness “. And due to your groups that you have exposure to would be a great education for them all. Receiving this type of education, from someone who has begun a journey down into a dementia , can change the ignorance within our communities and even our families. So in your blogs perhaps you could educate about one type of dementia each day, My friend you know? 🙂 , has never been given a TYPE of dementia none of the above . Horrendous Migraines she endures of late have been noted as a brain curser towards dementia.., she has lobe shrinkages. BUT no identified Dementia. Hence perhaps her longer journey. Well I hope in your busy world you can think about this style of awareness to all “out there” who continue in such ignorance, due to lack of education. No more from me , just pray you will consider my thoughts. thanks Carol-the obsessive one 🙂

    • Love to consider your idea… in fact, I am often ‘bare’ of ideas for what to blog. Perhaps for the last week of Dementia Awareness month, I can re-blog information about all the different dementia… I’ll give it a go, if I remember to! xx

  2. You have made me think here Kate even at this time in the morning. Firstly I volunteered to work with our Memory Service alongside Dementia Engagement. They asked me if I would help in the recruitment of staff. So leave my wife for half a day and so possibly have to pay a carer to be with my wife to work alongside paid staff. Do they think I am naive or very stupid?

    Then I have meetings arranged to meet paid oficers of the local CCG and Social Services to share my experiences of the shortcomings of their provision. I have already submitted documents to them based on our experiences Will they pay me as a Consultant or see me as a nuisance? Perhaps they could at least consider making a donation to a charity of my choice!!!!

  3. Totally agreed Kate. I also think that organizations that want to consult with PLD should be asked to AT LEAST cover people’s individual expenses AND donate to an organization or specific project that directly advances “community” support by and for PLD.

    I hope to see the day when PLD are paid real consultancy rates, ie $2000+ to run a day’s consultation.
    That means too that PLD have to believe that their expertise has true value in the world of work, from which they/you were excluded post-diagnosis. It really is the ultimate re-ablement. It’s what employment services organizations aim to achieve for people with cognitive & physical disabilitìes.
    People living with the changing cognitive & physical disabilities of dementia have the same rights to work, health, housing and well-being as anyone else.

    Yesterday was World Mental Health day. Veda & I did some suicide prevention with a friend last night- she truly “suffers” from extreme bipolar & has done all her life. Her experience of stigma has overwhelmed her to the point that this brilliant woman has NO self-belief.
    But to be surrounded by friends who “get” her, to be able to sob out everything she feels is “fucked” about her life, and to finally describe to me exactly how she intends to end her life when the right time comes….surely that’s a start to social de-isolation and “community” of shared experience?

    Back to dementia: we at #KiamaDFC are now planning a Web 2.0 platform website (Dennis’ baby) for our “greater Illawarra” region, with chatrooms, Zoom or Skype, linking to a FB group that I’ll set up and another regional database the Lyn uses a lot.
    Everything will link to/from the Dementia Illawarra website set up by UOW.
    So we’ll need to sustain all this.😉

    • It is wonderful some of the aged care providers are starting to pay for the consulting many of us do, and most often, my travel and other costs of presenting are covered. We now need everyone to, as well as employing people with dementia in some of the projects. x

  4. So difficult if only BECAUSE there is no “one right or wrong way” to anything. Often the difficulty lies with the parties involved not wanting to or being able to “listen” to other points of view. Buddhism deals with this “right or wrong” issue successfully.

    As humans, we assign names and values to an experience to help us understand and categorize our lives. But they are not true representations. Things just are, and if we can see that, we can be more open to working with the names and values assigned. A bird does not fly around thinking: “I am a bird. I can fly. I love my pretty red feather.” They just do and just are!

    Also, regarding payment for services, I think the rule should be that if an entity pays for their speakers to make a presentation, they all should be paid at least an honorarium. If engaged by a professional, services should be paid for! Do I understand from your comments that presenters without Dementia/ Alzheimer’s are paid and those living with Dementia / Alzheimer’s are not?

    As I previously said, feel free to use any of my poetry or http://mhorvch cares.blogspot posts as ammunition for your posts. Also, the photographs on my Facebook page are downloadable, so feel free to use any of those.

    • Yes, very often other speakers are paid, and accommodated in 5-6 star digs, and people with dementia are most often, not afforded the same respect. And thanks for your permission to use your images and poems.. wonderful xox

  5. I say I’m in the “wisdom business”. I own my life experience and may do as I please with it. It’s mine. The problem with getting paid is that it gives someone else a right to control my asset. And rightfully so. They’re buying something. I can no longer do that. It feels like a violation to me. It’s not realistic for me to have to promise to give them their money’s worth or do what they want me to do.

    • In many ways I agree with you on this, and when I was contracted by Alzheimer’s Australia for six months, always feared I was not ‘up to the job’. Being owned by others, simply because they pay you, is for the birds… I speak out primarily to hopefully, occasionally, make small change, indent for money, but I still think people with dementia, who are being ‘engaged’ by the sector to help them, should be paid, or at least a contribution to their chosen charity.

  6. Dear Kate, Here are two quotes that you can use, if you feel they are appropriate to your blog. These were designed by my sister to use for family members with loved ones diagnosed with dementia. Vicki Kaufmann

  7. Dearest Kate,

    Many of us volunteer to have our voices heard about what little is being done for us and what the great needs are. Even then the speech is not free and we are limited to what we can say in public. A clear example of that is what happened to our friend Michael Ellenbogan. A travesty! Our expertise is worthy of compensation or donations to our chosen organization. I’ve met some brilliant persons with dementia but unfortunately some do not see themselves as worthy of financial compensation which makes me very sad. I will be sitting on an advisory panel this year. i debated back and forth with myself about whether to do this or not. I’ve already been told that the focus is on early diagnosis of young onset. To encourage persons to pursue testing and early diagnosis. I think that’s wonderful! However, if the medical professionals are not educated about dementia and recognizing symptoms when persons present with cognitive symptoms these persons will still be treated like their blowing losing the car keys out of proportion. Not unlike many others they will be told they have depression and anxiety and sent to psychiatrists’.

    So many are alone in silence with this disease. There are persons like us out there with no one and nothing. All they may have is a few phone calls and a newsletter from the organizations that are set up to serve them. Yet there seems to be a public mis-perception that such organizations are really providing services for us when in fact they do little if anything at all. The big money sucking research pig being their main focus of expenditure designations.

    I say let’s get our game on!I Update those resumes and curriculum vitae and start applying for paid consulting positions in some of the organizations that make money in the name of our disease. Raise a ruckus! Other ideas?

  8. About 7 years ago – on my Tours ( speaking – lecturing )
    there were 10-20–30 listeners .All seemed they offer the poor Person with Dementia a Chance to Talk : they Sais thank you by buying me a Cup of Coffee.
    In the following years I was promoted to get a meal .
    Then I Started to ASK for a Fee : it is my Expertise ( having worked / as translater in the Dementia Field and being myself diagnosed. I explained WHY I am qualified to get Paid.
    I attended many Conferences – volunteered – Took Part in wirkshops : I am more then qualified / I am valuable as a speaker ! In Case Big companies hire me : they have to Pay ! My Name is like a VIP in the Dementia Field . The Alz in Germany tells me my Person is by no means the Person with Dementia / I confuse people . I know they fear pwd like me / us who Stand up .
    On EU Level – we work / we NEVER get anything . This Practice has to be changed !
    They get millions – we want them to donate ! This should be a Point in our DAI Policy for the Future !!

    • You know I am on the very same page as you Helga… having to head over to student quarters, to be able to attend the whole conference this year, WAS TOTALLY UNACCEPTABLE for a key note speaker. WE HAVE A LONG WAY TO GO, BUT TOGETHER, WE WILL GET THERE!

  9. Sadly it is the same with writers. I have been paid for my work fully four times: The most recent was this year’s £80 for a short story in New Writing Scotland 33. In 2004 I was paid £75 for a short story in My Weekly. While any payment is brilliant, inflation doesn’t seem to keep up with writers’ fees!

    • Agree with this Alison… the difference between writers and people with dementia, 1) you can still work for money if you choose to, 2) you are probably not being used and patronised to help organisations raise money, and 3) if you are published, then you get paid something for it.

  10. Hi Kate – Most participants of focus groups get paid – so why should people with dementia be any different. We generally cost in ‘thank you’ payments for individuals or DEEP groups that take part in a consultation, something which comes as a surprise to many commissioners – this is especially true if the consultation results in any kind of product that raises revenue or other forms of capital for the commissioner. Set against that though is the idea that if we also focus on making the mainstream channels through which people get their voices heard accessible – then more people with dementia will be able to participate in mainstream ‘conversations’ without needing to be part of any kind of ‘special’ provision at all.

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