I’m a Dementia Friend

cropped-Dementia_Friends_RGB_landI’d heard a lot about the dementia friends initiative by the Alzheimer’s Society last year and signed up to find out more… but being busy with setting up a new business and life generally I didn’t follow  it up. Then serendipity paid a visit and while taking time out to find creative inspiration at the Chirpy Store in Chapel Allerton I met a Dementia Friend – the store owner Harriet. I’d gone into the shop to look at the shop and their art classes… but I came out of the shop with so much more. Harriet told me about the short training course being run in Chapel Allerton and how they are aiming to make Chapel Allerton truly dementia friendly as a community of shop keepers and as a wider community. She didn’t wince at me saying I was a dementia carer and I felt accepted and understood.

For me this made my hidden underground role of being a family dementia caregiver/care manager transform in an instant… no longer something to avoid mentioning socially and became something that was accepted and ‘normal’.

Over five years in my family care giving role it has been difficult to connect with others in the same position. If I say I’ve found support in Scotland, London, USA and Canada more than in Leeds – what would you say? I’m really delighted to have the support of online friends around the UK and the world, but it must be time to find some more local pals. Being in my mid 40s , working full-time and being the only family carer for my father has meant connecting with day services and others in the same boat difficult. All those informal connections I’d make if I was older, in a closer community, not working, have just not been possible. So seeing the bright Dementia Friends Badge in the Chirpy Store switched on a light  for me.

I followed up my conversation with Harriet by going online to the Dementia Friends website  and found a session running locally in Chapel Allerton, Leeds the following week. The meeting was at Inkwell, easy to get to and I found a very warm welcome by the 20 or so other people that were there when I arrived. Our group had a memory consultant, OT, builders of carehomes, new and old carers, person with dementia, family and friends, other service professionals… it was an ideal group to get a broad view of what dementia was and how it effected us as a community. The course was run by Gemma from Royal Voluntary Service Leeds and she took us through a light touch informative view of what dementia is and how it effects people in different ways.

The initial aim of the Dementia Friends course is to raise awareness and as a result enable people to help each other better in the community… this group seemed to have an extra dimension – “We’ve just found out our relative has a diagnosis of dementia – What do we do? Who can help?” I ended up sharing my insights with people on Carers Leeds, Alzheimer’s Society and digital tools that have helped me in my role. The thing that the services often miss is… their services are not common knowledge and there is no ‘open’ community of help in the city to enable learning and support. I left the meeting thinking… I’d love to keep in touch with these people to help us all work together and make things better.

I keep considering the model of NCT (National Childbirth Trust) as a support system for people moving into a new and challenging role and how we could make something like that work for dementia – but it would take more than me to develop it. I used to say…”You can plan holidays, plan education, plan life in many dimensions, but the one thing I really need to plan is my Dad’s future care and it seems far too difficult/impossible.” Maybe Dementia Friends is the beginning of reintroducing community thinking and a way to start supporting people with dementia and their carers as they go through life… and stop it being hidden and over feared.

In July 2013 I went to the 7 Arts Bar IMG_1664and found the ‘Before I die…’ wall. IMG_1673I felt prompted to write this  “See Dementia open and not be scary…” this felt like an isolated cry at that point. So I’m delighted to see the Dementia Friends initiative starting to do this.

Dementia Friends training is open to all… so if you can make time, go along and help us make Leeds a dementia friendly city for all of us.


Digital Tools for Dementia

wecaredesign_world_shareI was recently invited to speak at the first #mHealthHabitat show and tell event in Leeds. Part of an innovative NHS programme being run in Leeds by Victoria Betton. Along with two other speakers we explored what was happening in health and care in the digital world or in my case how the digital world was helping me in my role as a family caregiver and care manager.

After a year of many informal conversations with people in the health and social care world in Leeds I had the chance to tell the full story of how my family use digital to make caring work and easier. With my story having both a professional and personal dynamic I was tempted to run away after the talk was completed… who am I with all these professionals listening? But something different happened. People really were engaged, had learned and understood my story and were interested to collaborate – the power of story telling vindicated once again.

Alicia Ridout awarded me the title of Honorary OT – a high complement indeed from one of the leading health innovators in the city. Over the past five years I have become an underground expert family caregiver and care manager and in combination with my professional digital communication and innovation interests it seems I do have a story to tell that people need to hear.

A few months later, I have now been able to use this talk as a starting point for a #mHealthHabitat innovation workshop with dementia service providers in the city. This is opening a wider conversation on both the opportunities for big changes and small changes that will help us move towards our city goal – to make Leeds a dementia friendly city and a great place to be supported as an individual with dementia and as a family caregiver.

Most recently I have also re-run this talk and presentation with Volition, Carers Leeds and Leeds Community Foundation to look at further opportunities. If you’d like me to come and share this talk and story with you and your organisation please let me know.