Dementia and us

Sunday 18 July 2021

Two islanders have shared the personal experiences that led them to become Dementia Advisors and their work to diminish stigma and support as many people and families affected by the condition as possible.

Express has this year been shining a light on the work of Dementia Jersey, its chosen charity for 2021.

In their latest monthly feature, two of the charity’s advisors, Sian (top, left) and Rachel (right), spoke about their role and the charity’s hopes for the future…

Tell us about yourself and what you do for the charity?

Rachel - I became a Dementia Advisor in July 2020, following my own use of the charity’s services when my husband was diagnosed in 2013. Exhausted and reaching breaking point, it was a family member who encouraged me to seek help, and that is where I met Sian, our charity’s counsellor. The diagnosis had felt like a death sentence, and I was left with a feeling of impending doom and increasing shame for the way things were. I cannot therefore even begin to imagine how our lives might have been had I not got help. At that time, I had little knowledge of the disease, only really what I had seen in films such as images of the very stark sanitoriums, places far away from sight.

My background of 23 years was in education, specialist speech and language groups, planning and design but it was my personal experience and the passion, care, and positive approach of those I’d met caring for someone with the disease, that inspired me to become a Dementia Advisor. My husband had died three years earlier, and I had been made redundant from teaching, making it the right time to join. 

My core work involves supporting family carers, friends, and people with dementia, and providing a whole range of information to understand the conditions, what to expect, professional services and lots more. We aim to find practical solutions with day-to-day living and if we cannot help, we will signpost people to the appropriate organisations.

Sian - I joined the charity 11 years ago as a Counsellor and Dementia Advisor, though my interest in working with people with dementia and their supporters and carers begun when I was training to be a counsellor. At that time, I fully expected my career path to lead me to being a school counsellor, but the placement work I did at St. Saviour’s Hospital as part of my training changed this.

I found that I was so very comfortable being with people with dementia, that the health science aspect of the condition was fascinating and that as I begun to hear the lived experiences of family supporters and carers, I knew this was the work for me. It also became clear that working with people with dementia, and older people too, was a largely unrepresented field of specialism in counselling, which for me was an added incentive to engage in this area of work.  

Rachel, how much support does the charity give to those affected by dementia? 

We are the only charity in Jersey that exists solely to help, support, educate and inform anyone affected. Whilst we have core services, we continue to be shaped by the needs of the people who contact us, adapting our services and recruiting new staff as we evolve to meet demand.

Hopefully by informing and speaking openly about dementia, everyone will feel able to seek support if they need it, helping to diminish stigma. The more we remove the stigma and people come forward however, the higher the demand for our services. 

Sian, you have been with the charity for a long time, how has the charity changed in this time? 

During this time there have been some significant changes, both in our charity, with the public’s understanding and awareness of dementia, and the provision of services for people with dementia more generally.   

The biggest changes within our charity are reflected in the numbers! Initially there was just me and two other members of the team, all working part time, and a Music Therapist. Now we have a much larger team, and provide a whole range of activities including music, arts, walking, swimming and coffee groups, with plans to also start a gardening project. We provide support groups for people with dementia and for carers, both in person and via Zoom, and continue to provide an extended counselling and dementia advice service, an education program and host numerous other events throughout the year. 

More generally, we have seen significant positive changes in the public perception of dementia and how this may impact a person’s life, this change we believe being partly responsible for the increase in the numbers of people accessing our services. 

Sian, what are your thoughts for the future? 

Just recently, I heard dementia referred to as a ‘mysterious condition’. This really struck me at the time as a truly profound summary of this complex, complicated but also very common condition.

There is still so much that is not known about the wondrous depths of our brains, how they manage to work as well as they do most of the time for most of us, and then why they may begin to work less well. Risk reduction measures are now better understood, but sadly there are no cures on the horizon, and the medications available to help treat some of the symptoms remain limited.

What we do know for sure, however, is that the services Dementia Jersey offers have made a positive difference to hundreds of people over the years, and because of this we are committed to continue with our work. 

Rachel, how important is it that Dementia Jersey continues to exist? 

Dementia is a part of many people’s lives and without a cure or effective treatment, the number of people affected will continue to grow, which means our charity needs to remain and continue to grow too, so we can continue to provide much needed support. As we all live longer, we are all more and more likely to be, or know someone that is, living with dementia.