Activists and Pioneers: The Women Behind Dementia
In recognition of International Women's Day today (8th March 2018), and a year celebrating the achievements and milestones of women, we would like to honour the many women whose relentless activism and drive for change has transformed research, care, support and representation for people living with dementias, their carers and loved ones.
Dementia is also a particular challenge for women, affecting twice as many women as men, and care responsibilities falling disproportionately onto them. Today, as on any other day, we need to keep striving to support and enrich the lives of people and women experiencing dementia in every way possible.
This is just a selection of the inspiring women pressing for progress and we recognise there are many, many more - we encourage you to share your stories on social media using #womenbehinddementia.
Click on the images below to read each woman's story.
Having been diagnosed with Alzheimer’s Disease in 2006, Agnes Houston was driven to push for better information and resources for people experiencing dementias and sensory challenges. She has occupied many high-level policy and advisory roles through which she has campaigned for improved dementia care and now sits on the Board of Dementia Alliance International. In 2015 she was awarded an MBE for her work in the field.
After working in a care home, Alise Kirtley’s eyes were opened to the many challenges facing care institutions and motivated to do something to help improve the quality of life for people living with dementia, both in care homes as well as at home in the community. So Alise founded the Dementia Home Consultancy Group, offering a completely bespoke support service.
Arti Prashar has worked creatively with older people for 20+ years and is Artistic Director and CEO of the Spare Tyre Theatre Company. Her arts practice is very much about engaging in the moment and finding different ways of communicating that are inclusive and uncensored for all people, including those living with dementias and their carers. Arti is also a Winston Churchill Fellow in Dementia, ageing and spirituality.
Inspired by personal experiences with dementia, Barbara Stephens has committed to supporting people living with dementias and their families throughout her life and career. She is Chief Executive of Dementia Pathfinders, a social enterprise committed to delivering education, learning, support and care for people living with, and supporting, dementia. Barbara is also a Caregiver-in-Chief at Unforgettable.
Through her practice, Beatrice Allegranti explores how movement can be a pathway to re-establishing connection and communication within dementia care. She is an independent choreographer and filmmaker, UKCP Reg. dance movement psychotherapist, clinical supervisor and feminist researcher and educator. Beatrice also holds the position of Reader in Dance Movement Psychotherapy at the University of Roehampton.
Bisakha Sarker MBE, is an independent artist and Artistic Director of Chaturangan. She has produced and delivered several pieces, experiences and workshops for people living with dementias and believes culturally diverse dance to be an integral part of the social and cultural fabric of 21st century British culture. Through her work, Bisakha continues the search for a style which embraces the demands of a body changing with time.
After seeing her father and several family members diagnosed with Alzheimer’s Disease, Carol Jennings was determined to delve deeper and this drive led to scientists making a ground-breaking discovery- a gene that could cause Alzheimer’s Disease. Carol is living with early-onset, familial Alzheimer’s and is now retired. She was previously employed as a ‘Younger Families with Dementia Support Worker’.
After her mother Myrtle Ellis was diagnosed with Posterior Cortical Atrophy (PCA), Diane Garfield and her family became actively involved in raising money for PCA. After raising more money than expected, Diane decided to do something more innovative with the money and was instrumental in setting up the charity Rare Dementia Support (RDS). She continues to support RDS fundraising and sits on the Strategic Advisory Board.
Professor Elizabeth Warrington is a true trailblazer in dementia research with her work leading to several new discoveries in the field including the identification of a new dementia - semantic dementia - in 1975. Now retired, Elizabeth continues to be an honorary member of the UCL Dementia Research Centre, sharing her knowledge with scientists and artists in the field.
Gill Windle is the Acting Director of Dementia Services Development Centre Wales, Bangor University, Associate Director of the Wales Centre for Ageing and Dementia research and Co-Director at Created Out of Mind. She previously led Dementia and Imagination, a programme which successfully demonstrated the unique contribution of the visual arts in dementia care.
Hannah Zeilig is a Senior Research Fellow at the London College of Fashion, University of the Arts, London and Visiting Research Fellow at University of East Anglia. She thinks of herself as an ageing scholar of ageing and has worked closely with people living with dementias for a number of years, to challenge stereotypes and find new, co-creative ways to ensure their voices are heard.
Hilary Evans is Chief Executive of Alzheimer’s Research UK (ARUK). Under her leadership, ARUK has been established as the UK’s leading dementia research charity and Hilary was involved in setting up one of their biggest research initiatives, the Drug Discovery Alliance. Prior to this, Hilary led the campaigning work at Age UK, improving the lives of people in later life both in the UK and internationally.
Jill Walton led in the development of the first rare dementia-specific support group at the UCL Dementia Research Centre. Over 22 years, this has grown into a support network of 5 rare dementia groups and over 3000 members in London and around the UK in the form of the charity Rare Dementia Support (RDS). Previously to her role at RDS, she was a specialist nurse advisor.
After many difficult years facing a dramatic personality change in her husband and with no idea what had brought about these changes, Jill Butcher’s husband Laurie was finally diagnosed with Frontotemporal Dementia (FTD). She discovered the UCL-led FTD support group and from there decided to share her experiences and help others living with this diagnosis.
Kate White is an activist, carer, researcher and psychotherapist. After her partner John was diagnosed with Alzheimer’s Disease nine years ago, Kate began to recognise how attachment theory might be applied to increase understanding between people with dementia and their caregivers and provide new ways for them to support, and connect with, each other.
Kathryn Gilfoy is Director of Resonate Arts, a pioneering arts programme for older people living with dementia and other mental health issues. Kathryn developed this programme from scratch and has since helped many arts organisations to develop work with people living with dementia. She was previously a Community Arts Facilitator and Director at Studio 3 Arts.
Linda Rose is the Founder and project consultant for Music for Life at Wigmore Hall, a programme bringing together professional musicians, care staff and people living with dementia through interactive music sessions. It was a truly pioneering organisation in fostering an equal and co-creative arts practice, enriching the lives of all involved in the sessions.
Lorraine Womack-Banning is a Pianist and Piano Teacher based in Bedfordshire. When her late husband Raymond Banning was diagnosed with Frontotemporal Dementia (FTD) Lorraine became aware of the lack of provision and care for people with dementia and their families. She has been very active in raising awareness and draws on her experience with music to enrich the care of people living with dementias.
Nicci Gerrard is a novelist, journalist, and the co-founder of John’s Campaign, which insists that the carers of people living with dementia have the same rights as parents of sick children to accompany them when in hospital. The campaign, inspired by her father John who lived with dementia for many years, has helped transform hospital culture.
Rachael Litherland is Co-Director with Innovations in Dementia CIC, a national community interest company, set up in 2007. Prior to that she set up and managed the Living with Dementia programme for Alzheimer’s Society and worked in advocacy for people with dementia in care homes. Dementia has always fascinated Rachael since her grandma was diagnosed when she was a teenager in 1988 and this experience has resonated throughout her work.
Since her husband Noel’s diagnosis with Posterior Cortical Atrophy (PCA), Roberta McKee-Jackson has been actively involved in several Rare Dementia Support groups, and now provides regional support for the charity. She was instrumental in setting up advice and support for people living with PCA in Hertfordshire and continues to raise awareness and share her experiences in a range of different ways.
Sally Magnusson is a writer, broadcaster, founder and chair of Playlist for Life, a UK music and dementia charity using the music of a person’s life to keep them connected to themselves and their loved ones throughout their dementia journey. This work originated from her experiences with her mother's dementia, where she realised the power of personal music.
Sally Knocker has been an integral part of a global culture change movement through her work with Dementia Care matters as well as an activist for the rights and recognition of the lesbian, gay, bisexual and trans (LGBT) community living with dementia. Her work is driven by both professional and personal experiences and a feeling that no one should feel lonely or afraid to be themselves.
Baroness Sally Greengross of Notting Hill OBE, is an ambassador for the Alzheimer’s Society and Co-Chair of the Dementia All Party Parliamentary Group. She has committed much of her life to the field of ageing and dementia, pioneering the development of dementia-inclusive environments, and driving policy that helps people with dementia to live more positively.
Selina Wray is an Alzheimer’s Research UK Senior Research Fellow at the UCL Institute of Neurology. She led one of the first teams to grow human brain cells in the lab, opening up new and valuable insights into dementia. Her work focuses on detecting changes in the brain as early as possible to inform the development of early interventions for dementia.
Susanna Howard is a writer, actor and theatre maker who founded and now runs arts and dementia charity Living Words. Susanna’s practice is enquiry driven and currently preoccupied with what it means to be an artist working in this field; what equality in communication looks like; and what the barriers to access are in supporting self-expression through the arts
After her mother Myrtle Ellis was diagnosed with Posterior Cortical Atrophy (PCA), Susie Shaw decided to raise some money for people living with PCA and subsequently co-founded the Myrtle Ellis Fund (now part of Rare Dementia Support). This pioneering charity is one of the few in the world supporting those with rarer dementias and Susie continues to fundraise and raise awareness.
Tracey Shorthouse is an author and speaker, determined to live positively with dementia. She decided not to shy away from expressing her experiences and writing became a powerful vehicle for her to share her voice. Tracey lives with an early-onset dementia called Posterior Cortical Atrophy (PCA).
Vivien Conacher is mezzo-soprano opera singer and founder of Songhaven, a professional concert series in central London that welcomes people living with dementia as well as their carers and companions. She has worked with people living with dementia since 2014, and hopes to bring the Songhaven experience to more communities in London.