The power of collaboration

collaboration-1106196__340Change is almost always difficult for people, and the wave of change via the voices of people with dementia is quickly growing. In fact, getting dementia might mean we are lucky, as we are getting used to change now, as it is happening inside our brains and bodies every single day. On top of that, we have no choice.  So my advice to others,  is to prepare your psyche for change, because it is definitely on the way.

People with dementia want to work with you, but, only in equal collaboration; we have a basic human right to be included and heard, and for others to stop excluding us or discriminating against us. We do not wish to work against you, but if others don’t start fully including us, we will have not choice. In a follow up email to some people with dementia who are part of a Dementia Working Group whom I had met with online recently, I wrote:

The stronger the global voice gets, and the more all the Dementia Working Groups and DAI collaborate and communicate, the harder it will be for others to ignore us. Oh gosh, won’t that be fun… they can’t just ignore us!

Joining Dementia Alliance International does not weaken any national or local Dementia Working Groups, it strengthens them. Why, you may wonder? Well, it is because working at the global level gives us information and relationships that most Dementia Working Groups do not have, as well as access to a lot of strategies and global policies you may not know about, not only that we can share, but that can help them. DAI is also not a threat to any of the Alzheimer’s advocacy organisations; instead, in partnership through equal collaboration, together we can help many more people. In fact, the collaboration between DAI and ADI has proven how beneficial it is for everyone.

It might simply be better to embrace change than to fight it… it is a battle you almost never win.

It onward and upwards, alongside the increasing disAbilities, the occasional and increasing fog, and in spite of those who do not want us to succeed or to have a truly authentic and equal voice…

2 thoughts on “The power of collaboration

  1. Kate, I fully agree with you.

    And there is a conundrum.

    At some point, the nature of the disease results in the person living with dementia being unable to articulate her or his needs in a way that might be understandable to many people for a diversity of reasons including the continued prevalence of the biomedical model, and also, significantly, the physical limitations on the person living with dementia.

    What that means is that, at a certain point, the voice of the person with dementia must necessarily be interpreted and delivered by someone other than themselves. Or at least this is the way I see it at the moment.

    Example: my mother is unable to advocate for herself. I am trying to be her voice.

    With that in my mind, I’m also writing a series of posts based on the Nursing Home Behaviour Problem Scale to try to help people (clinicians in particular) see how ridiculous it is to blame many so-called problematic behaviours on the disease and thus to try to stop the behaviour with antipyschotics and antidepressants.

    At the moment, I don’t yet exhibit any “noticeable-to-others” symptoms of dementia. My vignettes are thus necessarily based on observations I’ve made in my capacity as a care partner to someone living with dementia. Still, I think they are close. Very close.

    I know “please remain seated” resonated with you. I’d be interested in hearing your impression of the others I’ve written so far.

    The most recent is here: http://myalzheimersstory.com/2016/05/10/walk-a-mile-in-my-alzheimers-shoes/

    • Hi Susan, I agree the nature of the disease means eventually someone will need to advocate for them (us), but, the challenge I find, is that others take over about 10 years too soon, and disempower and disable us… also, I’ve just not had time to read your blogs, or even write many of my own. One of these days… hugs always xx

The only thing missing in this global conversation is YOUR voice... Thank you.

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