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aka Powys Dementia Network event Spring 2018 – Part 2 

Just in time for Dementia Action Week (21 – 27 May) – here is the concluding post covering activities at the recent Powys Dementia Network event in Newtown. The Network is facilitated by Powys Association of Voluntary Organisations and the day was attended by numerous agencies and groups from both the statutory and voluntary sectors in the county.

I wrote about the morning sessions in Part 1, which focused on updates from a number of statutory agencies (including Dyfed Powys Police, Mid and West Wales Fire and Rescue Service, Powys County Council, Powys Teaching Health Board, and Welsh Ambulance Services Trust). All the speakers emphasized the importance of working together to give people living with dementia the best possible life experience. We heard a few scary stories of what could happen in a worst case scenario, we saw some amazing technology, and we learnt that listening to people living with dementia and those close to them can be absolutely key in helping shape effective future services.

The afternoon session featured some truly inspiring and uplifting stories from those in the voluntary sector working closely to support people living with dementia, and also some of those people themselves.

Karen Rodenburg – Alzheimer’s Society, Dementia Friendly Communities Co-ordinator, North & Mid Powys

Karen and her two colleagues (working further south in Powys) have one shared goal: to support communities to become dementia friendly.

“A dementia friendly community is one in which people are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them.”

Karen added: “this is as descriptive as it gets as all communities are different.”

Communities across Powys are all at different stages in their dementia friendly journeys. Karen updated us on progress across the county. Smaller communities such as Guilsfield, Llandinam and Sarn are also now considering becoming dementia friendly. Whilst there may be some crossover with neighbouring towns (Welshpool and Newtown spring to mind), these communities will be completely different in feel and able to respond to the specific needs of the local people.

Karen then put out a call for more Dementia Champions. Is it something you might consider? Champions provide Dementia Friends’ training, and there is a big demand for these sessions particularly during daytime hours when many current Champions are unavailable due to work commitments. Two training sessions coming up soon: Tuesday 5 June at Oriel Davies Gallery in Newtown, and Thursday 14 June in Machynlleth.

Freedom Leisure group has spearheaded a new initiative for Dementia Action Week after discovering that a person living with dementia in Llandrindod Wells wished to play tennis! Two hour taster sessions will be available at sports centres throughout the county, including dementia friendly swimming and walking football.

And if you’re wondering why it’s now Dementia Action rather than Awareness Week, here is the explanation:

“People are already aware. It’s action we now need. It’s help. It’s support. Turning into Action Week is absolutely the best thing I’ve heard.” Chris, a person living with dementia.

Sam Bolam – Chief Officer, Dementia Matters in Powys

Sam began by saying that whilst she’d heard of many valuable services during the morning session, the picture that had been painted of the person living with dementia was – someone who is watched a lot, who might set a fire, murder their wife, and spend time talking to the emergency services about things that had not actually taken place!

“From wanting to help we make them seem very different to us.”

The vision of Dementia Matters in Powys is simply: Powys Communities where people with dementia matter. The organisation’s five priority areas are key to driving change:

  • Giving a voice. 
  • Tackling myths and stigmas. 
  • Promoting independence, choice and control. 
  • Being supportive and inclusive. 
  • Partnership working. 

Sam pointed out that we can get risk averse when developing services. We might say: “It’s really innovative. But it’s never been done before…” She admitted that creativity takes courage. But it needs to be injected into services where things have become “a bit static.”

We learnt about the first Dementia Meeting Centre for Wales in Brecon, and plans for a further four in Rhayader, Llandrindod Wells, Builth Wells and Ystradgynlais. Sam concluded with some challenging questions, including:

  • Can we truly describe a community as being Dementia Friendly when some aspects of basic dementia support are so lacking? 
  • How do we move right away from the seemingly inbuilt tendency to exclude experts by experience in decision making?
Jill and Frances

Gill and Frances – Living with dementia

For the final session we were treated to two truly spirited, funny and extremely articulate presentations from Frances, a person living with dementia, and Gill, who supports a person living with dementia.

Frances described her 20 year high-powered consultancy career. It was only when she retired that her husband noticed she was no longer able to decipher tax law when it had previously been the bread and butter of her work. She forgot dinner invitations. “It was a collection of things.” He encouraged her to go to the doctor’s where she was asked ridiculous questions such as “Who’s the Prime Minister?” “I was already feeling like a fool. I wanted to suggest – isn’t it Mr Gladstone? But I knew I shouldn’t!” Then to Frances’s surprise the doctor asked her things she really couldn’t do, such as name the days of the week and count… but both backwards…

Others that were more intensive followed these initial tests. “The truth eventually settles. When the doctor gives you a hug you know you’re in trouble!” Frances described experiencing cognitive impairment – “I frequently don’t know where I am. Well before I was 70 driving was not a possibility. When I have an episode of cognitive impairment I don’t know who people are. You don’t know what’s hit you. It makes you feel foggy. In shops I have no idea and just come back with tinned tomatoes (we have quite a stock now) or cat litter (we don’t have a cat!) We have laughed about these endless things…. Or else you’ll cry.”

Frances started attending sessions at Bronllys Hospital where she learnt useful coping strategies. “I know there are things I can’t do, but there are things I can do – like talk to you.”

“I also volunteer at Brecon Hospital. We offer patients the opportunity to come out of their rooms and talk. I go to Brecon Meeting Centre. They really understand that people with dementia aren’t mad – we’ve had little bits chipped away. It’s random things… how does that zip work…? How do I make salad dressing…? How do I tie shoe laces…? At the Centre we are helped to find our former selves through games that evoke memories, talking to each other, and doing activities we used to do. I go home tired but uplifted! You can have a whole life. It’s different. But wonderful. I feel I’m at a perpetual party and the cake’s good!”

Gill cared for her father until a few weeks ago – he is now in a care home. She described her experience. “I worked as a Facilities Manager. I am practical. Logical. Think on my feet and react to emergencies. I thought I was well-equipped to be a full-time carer for Dad. Was I wrong! It was such a shock.”

“Dementia does not sit in isolation – people are already being tugged in every direction. You have to make room and it adds to the stresses that you are already feeling. I have good, funny and black days.”

Gill’s lifeline, and that of her Dad’s, is the Brecon Meeting Centre. She told us why:

L is for learning plate. I is for integration. F is for friendship. E is for emotional support. L is for laughter. I is for inspiration. N is for nurture. E is for empowerment. And S! S is for smiles. “A smile is sunshine spreading across a face. The carers played walking football at the meeting centre and were smiling ear to ear afterwards!

And, finally, to Frances for the last word: “I love my coffees at the Brecon Meeting Centre. I go in there and order my coffee in a double D cup!”