Valuing people with dementia

WhatsApp message received a few weeks ago

Many people with dementia or their families and care partners do significant amounts of unpaid work for their own self advocacy, or for advocacy and many other organisations.

DAI as an organisation, and one I am truly proud to be a co-founder of, does this as well. DAI provides speakers for conferences, events and publication launches, runs focus groups, our members give professional lectures, connections for researchers, and is now a major platform for those without dementia to engage with people with dementia, in a large number of countries for research or other engagement.

People with dementia add positive value to organisations, and are also contributing significantly to global change through their own advocacy and activism. Yet no-one with dementia is financially rewarded for their time, their expertise, or compensated for the fact they are used for marketing and fund-raising purposes.

Often, many of us have  fully or partly paid for the ‘privilege’ of inclusion.

Article 19: Living Independently and bein included in the community, and Article 29: participation in political and public life, along with many other Articles of the Convention on the Rights of Persons with Disabilities confirm organisations should be making reasonable adjustments for this, and funding us fully to attend. Many other Articles of the CRPD apply to people with dementia, and to date, they are ignored.

Inclusion and participation, for people living with acquired cognitive disabilities caused by any type of dementia is imperative to reduce the isolation, stigma and discrimination, and it is a human right.

However, many of us have been discriminated against by employers and are no longer employed, and we are being discriminated against by advocacy and other organisations, who refuse to pay us for our time or expertise, especially when all other consultants and many speakers are paid for their time and expertise.

It really is time for a wake up call for those who don’t see value of engaging with us, including financially rewarding us for our contributions.

My dream is that sooner rather than later, people with dementia will never agree to give their time or expertise away for free.

That is part of the problem, as clearly, there is a new diagnosis of dementia every 3 seconds somewhere in the world, so organisations will always be able to find a ‘novice’ advocate, who has not learned they will be ultimately be undervalued.

The less you are paid, the less you are valued. If we didn’t bring value, organisations and researchers would stop asking us to engage with them, or to speak at their events.

Valuing people with dementia: the time is NOW.

22 thoughts on “Valuing people with dementia

  1. Hmmmmm. Yes, and well, no. Once again I don’t think this is an issue that is confined to people living with dementia. Take a look at the Huffington Post for example, whose business model is built on mostly unpaid bloggers contributing articles to grow their reputations and followings, while professional journalists become ever more scarce.

    Conference speakers, unless they are keynotes, rarely get paid. People clamour for free speaking slots to boost their books and businesses, landing a spot is considered “an honour” amidst hundreds of submissions.

    Everyone wants something for free, and many people are willing to oblige. So I would say “Don’t take it personal.”

    With respect to the issue of unpaid family/natural caregivers, I think it’s going to become increasingly problematic…


    • Agree, it is yes and no in some ways. However it’s not ok when keynote speakers with dementia are not paid, but others are! The reference in one of the other comments was interesting too! I bought the book referred to in the book mentioned in the article. Anyway, more important fish to fry!

      Namely, #BanBPSD !!!!!

      Liked by 1 person

    • I imagine it what would depend on the work… but I believe it should be the same rate as anyone else, whilst we are still capable of quality expert output. And as people with acquired disabilities, we also have a right to be supported to remain in paid employment.


  2. Pingback: Dementia, safeguarding, assessments and the way forward – Auntysocial

  3. I sense and understand the frustration – rightly so too because if the last twenty years of working in dementia care has taught me anything if that families, friends, neighbours and those with dementia outweigh anything and everything offered from most paid professionals.

    That’s not to say all professionals are a waste of space mind you – I’m one of them but still do the vast majority of work at home, from my laptop at the dining table in my own time and expense because I want to help.

    I also find the vast majority of professionals immensely frustrating to work with and alongside because unless you have considerable first hand experience it’s almost impossible to bring really in-depth levels of knowledge and brilliant ideas to the table.

    On a plus note I’m hoping one of my oldest and dearest friends in the world can help make some changes in this department. She is a clinical psychologist and specialist therapist, current based with a university in Canada where she is Assistant Professor and one of handful of people in the world qualified to teach what is new, dynamic form of therapy.

    When she comes home at the end of this year she and I are going to sit down and look through the current cognitive assessments and toolkit which as it stands aren’t up to much.

    I may even post on this subject and link to your blog as well if you don’t mind?


    • Thanks for joining the converstions here, and I see you’ve written about it now as well, and linked to my blogs. Will have a read of yours tomorrow (it is late here in Australia now). x


  4. Yes we value these and those people who take it upon themselves to show humanity. I do think outside the box away from profit making drugs and I am waiting for ideas that may be so far fetched as to be foolish. Can we have suggestions anything as we are going nowhere with any drug progress.


  5. DAI’s “track record” speaks for itself and without a doubt, so does that of our many members in 47 countries and, most especially yours Kate. I have known for a long time that we bring great value to the Dementia plight and to the people living with our disease. I have witnessed the countless hours invested by many of us in selflessly working towards positive change in spite of adversity. I am very proud to be a small part of what DAI does and will quit only when the good Lord stops me.
    “Together we ARE Stronger”. That is not a meaningless slogan but, a statement of fact.


    • Thanks Jerry, and your last statement is definitely a fact. We continually prove it to be so every single week… talk, laugh and maybe even cry occasionally together again very soon! x


  6. Just finished an interesting article in the May copy of the Monthly “Gross domestic hoax” which unfortunately clearly explains all care work is not valued by society. Worth reading. Got to keep fighting.


  7. Dear Kate,

    The person who said we “add little value”, clearly was not only ignorant but rude. Perhaps they cannot change the rudeness, but they should at least educate themselves.

    Inclusion and our right to participate is one, very important, aspect; but regardless of this,it would be impossible to put a dollar value on the volunteer hours put in by people with dementia to educate the community, including researchers and health professionals and to support others with dementia. Governments around the world recognise that without volunteers (in so many fields), thousands of services would fail and people would suffer. We volunteer because we care. Most of us do not expect great change in our lifetime, but our “work” as dementia advocates is to try and provide better understanding, better diagnosis, better support and one day a cure for dementia.


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