Inclusion: it’s that simple!

I received this article via an untraceable Avatar on the contact form of my blog, and am sharing it, as I feel it is worthy  of public expression. To enhance the blog, I have added the Dementia Alliance International mantra, which we use as an image. Whoever, you are, thank you for having some light bulb moments!!!

See the person not the dementia

By ‘the listener’

I, along with 1100 other delegates from around the world attended the Alzheimer’s Disease International conference in Perth, Australia. I was really pleased to see the conference being led by delegates who have a connection to dementia, in fact we were told there were approximately 80 people in attendance who had a diagnosis of dementia.

As I was listening to the many keynote speakers, I was most inspired by the powerful presentations by Edie Mayhew (and Anne Tudor, her partner), Helga Rohra and Kate Swaffer – all people who have been living well with dementia for many years now.

While this certainly isn’t new news to me, lo and behold a diagnosis of dementia does not have to mean your life ends, and nor should it.

It doesn’t mean you have to stop working or stop doing your favourite things, whether that be sport, singing, dancing or volunteering with your local advocacy groups.

Then the lightbulb went off – it is simply about inclusion.

We are putting all this effort into dementia friendly communities – which is great but what does this mean for the actual person with dementia?

It makes us (i.e. the general public) more aware of dementia and the needs of a person living with it, but does it include them?

As Kate Swaffer said, if we still want to work, let us work, if we still want to sing, let us sing, if we still want to volunteer, let us volunteer.

Don’t all of a sudden think a person with dementia can no longer do anything, or don’t start talking about the person like they are no longer there – talk to them, talk with them – treat them with respect and INCLUDE THEM!

I think, we as a society still very much stereotype dementia as ‘you can no longer fend for yourself, you have no memory of anything and are bed ridden’. Sure, this may be the case for some people with dementia but let’s remember there are an estimated 47 million around the world who have been diagnosed with a form of dementia and they certainly do not all fit under this stereotype.

I can hear some people say – yeah but what about those people with dementia, who ARE bed ridden and living in residential aged care, how do we include them? Well we heard a great presentation at the conference by Danielle Greenwood who spoke about an aged care facility she works at known as Arcare Aged Care; she was telling us how this facility focuses on relationship centred care over person centred care – meaning it is about forming a relationship with a resident rather than just understanding their needs.

Danielle told us a beautiful story of an elderly man who wasn’t able to talk or move around due to the severity of his dementia. However a staff member at the facility spent time each day with this man just holding his hand and giving him comfort (through human touch) and while this man couldn’t show his appreciation in words, he would move his fingers over the staff members, showing (in his way) he really appreciated just someone being with him.

This is INCLUSION! The staff member sees a person who wants to be included and this staff member in my eyes should be up for Australian of the Year, these are the type of people we should look up to.

As another presenter said at the conference, if you have met one person with dementia, you have met one person with dementia. So, why do we have to define a person by their diagnosis?

When I see Kate Swaffer, I don’t see a person diagnosed with dementia, I see a person with a Masters of Science in Dementia Care, a mother, a nurse, a writer and a ‘gosh dang’ inspirational person. When I see Helga Rohra, I see an advocate for human rights, a person passionate about helping others and a person who will stop at nothing to fight a disease she happens to be diagnosed with. When I see Edie Mayhew, I see a person who loves her partner, loves her puppy and loves life.

The words that Helga said really relayed back to me, “just include us” – I think this is a message for all of society to think outside the box and if someone wants to be involved – LET THEM! Don’t let stereotypes hold you back from including someone. It may mean you might have to make changes to what you do, you might have to be more patient with a person, god forbid you might even have to do some training to further understand what a person is going through but please don’t let this hold you back from inclusion! 

The mantra of “see the person, not the dementia” has never rang more true and can I say WELL DONE to everyone who has not let a diagnosis hold them back, it is inspirational and keeps people like myself proud to be living in a society where we have role models and inspirational people we can look up to.

17 thoughts on “Inclusion: it’s that simple!

  1. Pingback: Living better with dementia: what does this mean for carers | arcarcarcarc

  2. Reblogged this on pandowblog and commented:
    Sorry if this is a repeat – I am not sure if my original blog was successful as was not logged in – Paul

    Kate, The conference must have been a wonderful experience. I agree with the anonymous writer’s comment that Danielle Greenwood’s staff member was using INCLUSION to relate to a man with advanced dementia.
    This is one of the 5 pillars of Thomas Kitwood’s treatise on Person Centred Care, Dementia Reconsidered, the person comes first (1997) page 82. The other 4 are Attachment, Comfort, Identity, and Occupation culminating in a feeling of Love.
    However, I am curious about the writer’s comment that Danielle mentioned “this facility focuses on relationship centred care over person centred care”. My understanding is that Person Centred Care is all about forming a relationship between residential staff and the people they care for; is relationship centred care a different technique?
    Thank you for your blogs – they bring a new perspective to the personal struggles of people with dementia. Paul

  3. Kate, The conference must have been a wonderful experience. I agree with the anonymous writer’s comment that Danielle Greenwood’s staff member was using INCLUSION to relate to a man with advanced dementia.
    This is one of the 5 pillars of Thomas Kitwood’s treatise on Person Centred Care, Dementia Reconsidered, the person comes first (1997) page 82. The other 4 are Attachment, Comfort, Identity, and Occupation culminating in a feeling of Love.
    However, I am curious about the writer’s comment that Danielle mentioned “this facility focuses on relationship centred care over person centred care”. My understanding is that Person Centred Care is all about forming a relationship between residential staff and the people they care for; is relationship centred care a different technique?
    Thank you for your blogs – they bring a new perspective to the personal struggles of people with dementia.

      • Thank you Kate. My interest in Person Centred Care (PCC) is because my wife, who is with dementia, has been for over year in a facility that trains their staff to use PCC as per Kitwood’s principles and Dawn Brooker’s implementation in her book Person Centred Dementia Care – making services better (2007).
        I can vouch that PCC is effective even though staff limitations can work against its intent. Of course, implementing PCC is only effective if its principles are adopted by senior management, which applies at my wife’s facility. Paul

      • Sadly, I have seen too much of the ‘staff limitations’ you talk about, and have rarely seen real PCC being delivered, anywhere in the world (at least where I have seen/been physically, or have heard from by people with dementia and their families)… Glad your wife is getting better care, or at least I hope so xox

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