Owning your life: Advocacy for dementia

own your life 2One of my newer and very dear friends Beth Britton from the UK who writes a blog called D4Dementia and recently wrote  Advocacy and dementia – A vital partnership. She is a campaigner and consultant, writer and blogger, and her dad had vascular dementia for approximately the last 19 years of his life. Her blog is definitely worth a read, and this one is written from the perspective of people with dementia needing to have advocates speak for them, when they can’t. Beth is a remarkable advocate for those living with the disease, as well as people like herself, who are or have been a family carer of people living with dementia. Beth wrote;

People with dementia and their carers are at huge risk of marginalisation, leading to information being withheld, dignity and respect being eroded, decisions being taken for them and without their knowledge or consent, discrimination, inequality, difficulty in accessing health and social care services, loss of independence and opportunities for personal growth, and a general withdrawal from participation in all aspects of their life.

For a long time it was believed that people with dementia were stupid or in need of having their lives controlled.

With the Mental Capacity Act and the Deprivation of Liberty Safeguards came a complete change of emphasis, with the prevailing view now being that everyone has capacity until it is proven otherwise.”

Please do go to Beth’s blog to read the full article.

Well, following on from that, we are not stupid. In light of Beth’s words, I believe my blog reinforces how important it is that many of us around the world living with a diagnosis of dementia have been speaking up about what is ‘right for us’ and hopefully ‘right for other people with dementia’ whilst we are still able to have a say. Having our family help create a one or two pager for the nursing home staff to advise them of our likes, dislikes and preferred activities does not seem that helpful to me, but in many cases, by the time someone gets to aged care, this is what is done as most assume people are unable to communicate their own wishes, unable to give this information themselves.

I was responding to something online for uni yesterday, where I recalled watching many new nursing home residents come into aged care; the resident was placed into their room to ‘settle in’ while the family or friends filled out the paperwork, including their likes and dislikes. It was rare to see the person being admitted involved in this paperwork, the implication being they were incapable. So the digital story or poem I posted yesterday by Mary Beth Wighton is important. People with dementia need to be empowered to speak up for themselves, while they can, not just to live well, but to ensure the plans for their futures are self determined and self directed.

I’ve blogged about advocacy and dementia a few times, and think Advocacy as an Intervention for Dementia, Advocacy in Action and this one Changing the World are blogs worth revisiting. I regularly review my own advocacy, the power of it, why I continue to do it, and occasionally speak about my experiences as an advocate. It is exciting, and also very often tiring and frustrating, but to anyone considering becoming an advocate, I’d say… go for it.

Start advocating now, start slowly, be thoughtful about it, and NEVER EVER GIVE UP advocating for what you believe in!! Own your own life.

8 thoughts on “Owning your life: Advocacy for dementia

  1. Many thanks for mentioning my blog Kate – very kind and much appreciated. The blog post you refer to was one I wrote to clarify my thoughts ahead of a presentation at a conference on advocacy and dementia, where I delivered many of the same ideas, with a little help from PowerPoint! It was enthusiastically received, and there is no doubt that advocacy is absolutely vital, both for people diagnosed with dementia and their carers/BUBS. My dad got to a stage where he had no verbal communication and very little ability to gesture or express himself, particularly when he was very poorly with infections etc. I worry hugely for the many people who don’t have a loving family to look out for them when they are in similar situations – for some people their next-of-kin is a social worker or a solicitor, and they are effectively only there to be notified of death.

    Keep up your inspiring advocacy. Hugs xx

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  2. Thank you, Kate.for sharing your thinking with your readers. This blog post helps me to understand what advocacy means to you. I have recently begun the process of coming out of the shadows and advocating for myself. Thank you for helping to light the way.

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