Blogging to change dementia by Gill Phillips

In May 2012, I had a small idea. To build on my Whose Shoes?® concept, I would ask a wide range of people to write a blog and I would post them, one a day, during the UK’s Dementia Awareness Week.

And I did. These were the blogs I posted that week. But it is no good just raising awareness for one week and then doing nothing more.

And so, my small idea became a big idea. The “in my shoes” series now has over 100 guest blogs.

The blog series is like a jigsaw puzzle where we do not know the number of pieces but each piece adds a little more to the finished picture, an important insight. Many are about dementia; nearly all of them are about different aspects of health and social care.

The blog posts showcase good practice, particularly around holistic approaches to well-being, and shine the spotlight on poor practice. I have been thrilled by the quality of the contributions and sincerely thank all the great people who have each taken time and trouble to share wonderful projects, passionate pleas, and personal experiences.

Gill Phillips (right) with Kate Swaffer (left)

Gill Phillips (right) with Kate Swaffer (left)

Through the blog series and associated work, I have met inspirational people and made deep friendships. The one that stands out, and particularly in the context of my forthcoming tour of Australia, is discovering and becoming friends with inspirational Kate Swaffer from Adelaide. I discovered Kate through her own daily blog (it takes a lot of willpower and determination to write a daily blog!), sharing her experiences and feelings about living with a diagnosis of younger onset dementia. It is compelling reading – informative, illuminating, poignant, interesting, funny… but always honest and real.

Blogs written by experts by experience such as Kate should, in my view, be compulsory reading for students and professionals, alongside their more formal learning.

Kate was also dabbling with Twitter and I introduced her to our #dementiachallengers – a powerful “unofficial;” hashtag we have established in the UK. The “Dementia Challenge” is the official government initiative and our #dementiachallengers are now influential in “supportively challenging” what this means in practice, particularly in terms of the daily lived experience of people affected by dementia, including their caregivers and families. We applaud and promote imaginative approaches that value and embrace the whole person; we tackle and expose complacency or rhetoric that has no substance.

It is great to see the progress that is being made in increasing awareness and reducing stigma associated with dementia. In the UK, over 50 cities, towns and villages are taking local action to become “dementia-friendly”. The government’s Dementia Challenge has added some much needed oomph; I like to feel that our spontaneous #dementiachallengers movement has added groundswell and a refreshing element of ‘Making It Real.’

We are a very passionate group and want to bring about positive change – quickly. The popular dementiachallengers.com website is something to be proud of – developed by carers for carers. We have even adopted a theme song!

Writing and hosting my “in my shoes” blog has been a fascinating experience. It has led to some very interesting invitations.

I wrote a two-part guest blog for the London School of Economics. I ran a Whose Shoes? workshop at the 23rd European Alzheimer conference in Malta in October, strongly supported by the European working Group of people living with dementia.

This week, I am taking part in a Question and Answer panel at the prestigious King’s Fund Annual Conference in London. But most importantly, it has led to me finding wonderful people like Kate Swaffer and bringing Whose Shoes?® to Australia in December 2013.

Gill Phillips is a First Class Honours graduate, and with 35 years’ experience in the sector, she is a perceptive thinker, skilled at highlighting barriers and inconsistencies in policy and practice and devising innovative ways to engage people and help them move forward. An international speaker, she gives lively, challenging talks and workshops and is a champion of the full involvement of experts by experience.

Download issue 2 in free PDF format here.

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