It is with mixed emotions that we announce the retirement of Jean Tottie at the end of March. Jean has made the tough decision as she approaches her 70th birthday. She feels now is the right time to take a step back from the role as Chair of tide – Together in dementia everyday and Life Story Network.
However – we are delighted that Jean will now become our first Patron of tide. This role will allow her to continue to champion the work of tide and continue to give a voice to carers of people with dementia across the UK.
Working in health and social care, initially as an Occupational Therapist and senior manager at local and regional levels Jean has also been a dedicated volunteer for most of her adult life. She has been committed to the ethos of giving back, and connecting with her community. After her father was diagnosed with dementia in the early 2000’s, she witnessed first-hand the need for recognition of carers of those who had been diagnosed with dementia. Jean was determined to use her professional skills, network of contacts, and personal experience to make a difference to those who were caring for someone with dementia.
Jean first became aware of the power of Life Stories as a judge on an awards evening. She created with her father, his own Life Story. She saw the power of compiling a Life Story to help people with dementia share who they are, convey important information about themselves, and help enhance their sense of identity. From there on, Jean was committed to Life Story work for the prime benefit of the person with dementia, the carers, and for professionals.
It was clear there was a demand for a national network to promote Life Story work and share practice. Funding was found, leading to the launch of the Life Story Network at the Royal Armories in Leeds in February of 2010. Life Story Network began…
Jean continued in her volunteer work, including being a Trustee of Dementia UK, and participated in many national strategic groups representing the voice of carers whilst also supporting other carers to tell their stories of caring for someone living with dementia.
Jean was passionate about ensuring that the National Dementia Strategy in England included the voice of carers and used her influence in the development of the strategy. She recognized the importance of raising awareness and influencing at a national level and helped to organise a reception at the House of Lords in November 2013, hosted by Baroness Sally Greengross and addressed by the Care Minister, Paul Burstow, to highlight these issues.
Her work at this level allowed Jean to gain the support of the National Dementia Action Alliance to run a Carers Call 2 Action. This achieved its goal of recognising the unique needs of carers of people with dementia and confirmed the need for a national involvement network to connect carers together and provide a strong collective voice. It also introduced a new role of Carers Engagement Lead, which transferred to the Life Story Network when the Call to Action ended so that the first standalone network (tide) that focuses on the needs of carers of people with dementia could be developed
Securing Big Lottery and Life Changes Trust funding, tide has continued to grow, achieving charity status in December 2019. It now invests in carers across the UK.
Jean’s role as Chair has enabled tide to flourish as demonstrated by her LifeTime Achievement Award in Dementia Care in November 2018. One judge commented:
“Jean is a natural networker, driven by helping and empowering people to have a voice. She has demonstrated that where individuals have brought to her their experiences, she has been able to develop resources to share with and benefit many. A passionate advocate for improving the life of people living with dementia and their carers”
Jean’s positive belief in people is something to behold. As said by a member of tide:
“‘As a carer for my mother, who has a diagnosis of dementia, I have attended various post diagnosis and carer events, including Alzheimer’s Scotland, Dementia UK, Age UK and Carers Centre. I left these events feeling guilty and that I wasn’t doing enough to support my mother. However, it was not until I watched Jean explain the challenges that a carer can face when dealing with someone with dementia that I felt someone actually understood and truly empathised. Jean talked about how a carer doesn’t always choose to be a carer, and can feel resentful of the impact it has on their life and family, forcing them to make difficult choices. I was going through a very difficult time and hearing Jean talk about these feelings made me feel more confident about asking for the help I needed.”
Jean is a passionate gardener and plans to spend time enjoying her garden and visiting garden shows. She also plans to enjoy a few holidays and is looking forward to spending time with her family.
We would like to thank Jean for her tenacity and hard work in her role as chair. We look forward to continuing our relationship with her and benefitting from her wise advice in her new role as patron.