The members of our Carers Advisory Panel (CAP) advises and guides us on our strategy and operational development. As current or former carers, they offer us real-life experience and perspective so that we can fine tune our services to ensure we offer the best possible services to carers of people with dementia.
We are honoured that our carers offer us their expertise, knowledge and wisdom.
Jayne Goodrick and Chris Roberts
Chris Roberts and Jayne Goodrick are married and live in Rhuddlan, North Wales. Their business is property management. They spend most of their time speaking to others about their lived experience of dementia, both nationally and internationally. Jayne’s mother has a diagnosis of dementia, small vessel disease, and Chris has a diagnosis of mixed dementia, vascular damage and Alzheimer’s. They both contribute to various social media platforms and online peer support networks. They are Dementia Friends Champions, Ambassadors for the Alzheimer’s Society, Champions for joint dementia research, and Ambassadors for the National Association of Care Caterers, NACC.
Jayne is on the advisory group for ‘tide’ (together in dementia everyday), a dementia carer’s involvement network; the North Wales Dementia Resource Network, BCUHB SBRI committee and Clinical Advisory group, the largest health board in Europe. She speaks on behalf of many carer groups and charities, and supports other PWD to become involved and have their voice heard.
Chris is also Vice Chair on the European Working Group of People With Dementia, an Honorary Lecturer for Bangor University, a member of the Dementia Policy Think Tank Group for DEEP.
They are both on many working and advisory groups for dementia related networks. They have both made several appearances on national TV and radio including a documentary entitled ‘Living with dementia, Chris’s story’ for BBC Panorama, and they continually strive to change things for the better.
A writer by profession, I’ve worked in TV drama production and as scriptwriter on popular series such as EASTENDERS, CASUALTY, and HEARTBEAT. After an unintended career break to care for my mum, Glenys, who died in January 2020 after living with dementia for over twenty years, I have returned to the industry with original work for radio, stage, and screen, including THE THINGS WE NEVER SAID – an award-winning play for BBC Radio 4 (starring Siân Phillips and Lia Williams) that explored the emotional and psychological impact of dementia on a mother/daughter relationship.
Since mum went into residential care in 2011, I have been active in the field of dementia and carer issues, contributing to campaigns, consultations, and research studies, writing and speaking widely on the subject, including a blog about my experiences. I’m on the Advisory Board of Raising Films, an organisation campaigning for parents and carers in the screen industries, and joined DCC’s Carers Advisory Panel to help others access vital information and support that was not available to me and my mum, struggling alone behind closed doors.
My caring role included looking after Mum, who had terminal cancer, and Dad who had vascular dementia and Alzheimer’s.
We underwent many trials and tribulations including trying to access appropriate services, coping with the cultural expectations and biases of being part of an Asian community.
As a working carer I had to juggle constantly between my parents and my job. Daycare became very important to me because I was working full time and I was worried about Dad’s safety.
It was as a direct result of my experiences that I began working for charities focusing on Asian families living with dementia. I was incredibly fortunate to have access to appropriate daycare; the carers I work with now are struggling due to cuts in services.
My experiences have given me courage to speak out not only about my experiences but of the families I work with on a regular basis.
At age 59, after several years of mounting symptoms, my wife was diagnosed with vascular dementia in 2006. I’d given up full-time work to look after her some years previously. I continued caring for her at home for three years until I was unable to cope any more and she moved into a nursing home. My experiences highlighted the paucity of help and support available for carers of people with dementia and the lack of awareness amongst decision makers as to the needs they have.
I joined Uniting Carers to campaign for better services and support and am now on the Advisory Group for tide (together in dementia everyday). I helped on the working group that recommended the future direction of RSAS. I see the development of the NRCC as an exciting and ground breaking project – without dedicated, supported and educated family carers the whole dementia support infrastructure would come tumbling down.
After a career in international marketing, I stepped away from corporate life in 2013 and finally took early retirement in 2017 because my wife’s Alzheimer’s had advanced to the stage where she could not cope without my full-time assistance.
I am passionate about helping other carers and since 2018 have spoken publicly at events and in the media about the very many practical aspects of supporting someone living with dementia. In particular, I learnt the importance of compartmentalizing emotion such that I could think clearly about decisions – made as a carer – that needed to be taken in the best interests not only of my wife but also for me and my family. I am a firm believer in early disclosure of dementia to family and friends, employers, banks and other powers that be because this generates not only an understanding but usually the creation of a help infrastructure which is without doubt needed as the disease progresses.
My wife went into care in May 2019 when I could no longer recharge my batteries to look after her, a traumatic decision which nearly all carers will almost certainly have to face but which has to be tackled and investigated months before the need will inevitably arise.
In 2017, my father was diagnosed with Young-Onset Posterior Cortical Atrophy (PCA), an atypical form of Alzheimer’s disease, aged just 61. As an only child to a single parent, overnight I – then aged 27 – became primary carer to Dad, whilst simultaneously managing full time employment.
Although we are still on our journey, I’m passionate about taking the experiences I’ve gained to date as a new carer, to help educate and support those silently going through similar situations behind closed doors.
My husband Paul and I have two adult sons. Until 2017, I was a freelance museum conservator and he was a fine art and antiques valuer for a London auction house. We were both passionate about our work and leisure interests. After a couple of disturbing years of increasing behavioural issues and seemingly medical indifference, Paul was finally diagnosed with behavioural variant frontotemporal dementia, the most common of the rare dementias that primarily affects younger people.
By chance a friend put me in touch with Dementia Carers Count, we attended a pilot training course; ‘me you dementia too’. The expert resilience training from specialist therapists taught me vital coping strategies. I gleaned a better understanding of dementia in all its forms and felt stronger than I had in over a year. I would have the courage to cope. I accepted that I had no choice and was so inspired, I decided to become an Ambassador for the charity.
I have joined the Carers Advisory Panel, hopefully to offer my practical and pragmatic approach to problem solving, a few ideas and a bit of ‘thinking outside of the box’. Bringing my thirty years’ experience of preserving extremely fragile and often unstable archaeological artefacts!
I specifically want to raise awareness of DCC’s support in helping carers cope with particularly challenging circumstances.