Telling the truth and turning the tide

This blog was written by our National Carer Involvement Lead for Wales Amy Kordiak.

For Dementia Action Week, I thought I would share my first three weeks as National Carer Involvement Lead for Wales because I am already completely blown away by the impact tide carer volunteers are making in Wales.

My second day in post was spent in Betsi Cadwaladr University Health Board Dementia Awareness training. I had been briefed that tide would have a presence and two of our volunteers would be presenting. My first test was finding the memory clinic in Llandudno which I failed, arriving a little late and flustered and sneaking in to the back, wanting the ground to swallow me up.

The training day started with an overview of what dementia is, the different kinds of dementia and some very sad examples of clinical measurement tools used to assess progression of symptoms. We covered the three D’s, the five A’s and some very scary statistics and numbers. There was a lot to take in and I quickly realised I had a lot of bedtime reading to do!

I had worried initially that in a room of health care professionals, the information may go over my head somewhat but was pleased that it was all explained at a level I could take in and that would be helpful in my work. The next section was the tide volunteers and I waited with bated breath as Sue began to speak.

I was trying to think of a word to summarise how I felt sitting there and listening to Sue share her life story and the best word I can come up with is ‘honoured’. I felt honoured that Sue had allowed a room full of strangers (myself included) into her life and shared her story of being a carer for her husband Baz. Sue spoke honestly and frankly about her life pre- and post-diagnosis and now her husband is in the late stages of dementia. Over a half hour or so, Sue had brought all of the information we had just heard about dementia to life. Sue had obviously lived through some very challenging experiences and it was clear that while the health care professionals are the experts in a medical sense, Sue was the expert when it came to her husband; knowing him inside and out and fighting to retain his dignity and independence. She talked about services not really being suited to Baz as he had young onset dementia and was still very physically fit; a keen cyclist, windsurfer and would partake in anything active. Doing something sedentary with people a lot older than him would not meet his needs and could have left him feeling more depressed. Sue talked about the invaluable support she had received from the Crossroads Care Service in North Wales delivered by the Carers Trust because the support workers would do things with Baz which really met his needs and interests – even taking him for a pint.

Following Sue, David, another tide volunteer, talked about his experience as a carer for his wife Caroline. David also talked candidly about his experience of the health and social care system and how he had never had training to undertake this role he had been dealt. We got to hear how David had met Caroline from his initial love story, to raising their family and finally to the grief and challenges they had overcome together as a team prior to her diagnosis. David also shared that he had experienced guilt and mixed emotion that came from supporting his wife and admitted that being a carer was not something that came naturally to him as that had always been his wife’s role. Again, I felt honoured to hear David’s story.

Following the life stories, tide’s vice chair Ruth stood up and talked briefly about tide and how Sue and David had both completed the ‘Presenting to influence’ module as part of tide’s development programme and that was the third time I felt honoured that day – honoured to be part of an organisation that is ensuring that carers are seen as equal partners and can truly influence dementia services and policy across the UK.

The evaluation forms for the training all cited the input from the tide volunteers as being incredibly powerful and the attendees agreed that it would influence their practice going forwards, paying much more attention to the views of the carer as the expert in how to support the person living with dementia.

I can take away with me from today that family members need as much time and consideration, and that we need to be more mindful of carers and family members. 

I also had the chance last week to attend a roundtable event chaired by the Alzheimer’s Society which brought together Mark Isherwood AM, professionals working in the field of dementia, people living with dementia and carers and former carers. The meeting was to discuss people’s experience of acute hospital care; what was working and what could be improved. Our tide volunteer Sue also attended this session and again shared her experiences openly and shared practical considerations health care professionals could take on board to make life easier for carers.

Alongside the growing team of tide carer volunteers, Sue and David are giving up their precious free time, having already given up so much of their lives to care for their partners, to ensure that other carers are listened to and valued as individuals in their own right and that health care professionals and decision makers are using their expertise to press for positive change.

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