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.
I have had the lived experience of dementia for 20 years through my husband who had early onset frontotemporal dementia, diagnosed at 52. Our lives, and and those of everyone around us, have been profoundly affected by this devastating disease and whilst I am no longer responsible for trying to meet his day-to-day needs, I am still involved in the dementia world. I believe it is important to use my experience, and by proxy my husband’s, to work with organisations that are investing in improving the future experience of those living with dementia.
My sincere hope and aspiration is that the ambitious project that DCC is developing will become an important facility within the network linked to the growing awareness of the need to support and empower dementia carers facilitating their own well-being and enabling them to care well.
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 (90), who has lived with dementia for many years, I am returning with radio and theatre work, including The Things We Never Said, a play for BBC Radio 4 (May 2017; starring Sian Phillips and Lia Williams) that explores the emotional and psychological impact of dementia on a mother-daughter relationship.
With mum now in residential care, I campaign on dementia and carer issues, blog about our experiences at Dementia Just Ain’t Sexy, and write and speak on the subject for outlets including Guardian Socialcare, BBC Woman’s Hour, Victoria Derbyshire, and BBC Wales. I joined this panel to help others to access vital information and support that was not available to us, struggling alone behind closed doors for well over a decade.
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.