Margaret Butterworth was a pioneer in dementia care in the 1980s and 1990s. She had a hand in many key dementia initiatives in London at that time and was a passionate advocate for families affected by dementia. She was a family carer herself and she supported other family carers who were struggling to survive in the face of a paucity of services and little recognition of the challenges they faced every day. Margaret was also a campaigner and ambassador for frontline care workers who, in her view, were poorly paid and under recognised for their talents, skills and compassion. Arguably this is still the case, albeit that much has changed in the field of dementia care in recent years.

Amongst Margaret’s many achievements was the formation of a support and influencing organisation called CRAC Dementia (Council of Relatives to Assist in the Care of Dementia) which actively sought to improve dementia training for healthcare professionals. Through her links with University College London (UCL) Margaret, with other carers from CRAC Dementia, designed training sessions for medical students, trainee psychologists and student nurses. These programmes, delivered exclusively by family carers, were extended to other educational establishments and for 15 years (until her death) Margaret skilfully developed and led this work. In various forms, this kind of carer-led training continues today, as co-production and co-delivery by ‘experts by experience’ involving both family carers and people living with dementia.

Margaret was an early member of the Alzheimer’s Society and Chairman of the London Centre for Dementia Care from 1999 until 2002. She held a lead position at NAPA (National Association of Providers of Activities) and was also co-creator of the Admiral Nurse model and adviser to the pilot Admiral Nursing project in the early 1990s. As a result of this initiative, Margaret became a founder Trustee of the charity Dementia UK, known at the time of its incorporation (1995) as ‘The Dementia Relief Trust’.

I had the privilege of working with Margaret in my role as Chief Executive of Dementia UK. Sadly, I knew her for too brief a time, from 1999 until her death in 2002. Margaret was living with cancer for a significant proportion of this period, but this was not widely known. She stoically carried on with her mission to improve the lives of people with dementia and family carers and skilfully handed over all the aspects of her work to other people, professionals and family carers who were playing significant roles in the dementia care field in London at that time. She wanted to be sure that the campaign continued, and I, together with many of her former colleagues and friends, can vouch for the pivotal part that she played in motivating and inspiring our work.

As a legacy, a group of Margaret’s friends and colleagues established a memorial fund, which, in the years since her death, has been used to give annual awards to care-workers in recognition of compassionate care. The Margaret Butterworth Awards are specifically designed to reward the work of healthcare assistants, activities organisers and social care staff, people working on the frontline of care, responsible for meeting the complex mix of social, spiritual and physical needs that many people with dementia will require.

The Margaret Butterworth Awards 2018 are open for nominations until 31st May 2018. The eligibility criteria and details of the process can be found on the Dementia Pathfinders website.

Finalists will be invited to attend the Dementia Pathfinders Annual Presentation Event in central London on 11th July 2018, where the winners will be announced. There will be up to three successful candidates; each will be presented with a certificate and a cash prize of £300.

A regular educational meeting of health and social care professionals and academics is also named in Margaret’s memory. The Margaret Butterworth Care Home Forum was originally started at UCL as part of the London Centre for Dementia Care and is now co-hosted by Kings College London.

And the Butterworth Centre an NHS facility for people with continuing care needs in St John’s Wood was named in recognition of Margaret’s tireless work in the city of Westminster.


Please consider nominating a colleague or member of your care team for the Margaret Butterworth Awards 2018. It could make all the difference to their confidence and self-esteem and provide genuine recognition for their commitment, sensitivity and compassion.

If an inspirational person has made a difference to your life, perhaps by encouraging you to stretch yourself or supporting you to achieve more than you ever thought you could, please do get in touch and tell me your story. You can contact me at or by telephone at the Unforgettable office.

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