Paul John Bayfield: Keeping Mum, documenting the journey from diagnosis to death

Posted on the 20th May 2021

Paul Bayfield first contacted Race Against Dementia a short time after his Mother, Janice had passed from dementia. Old family friends of the Stewarts, Paul was keen to extend his support to the family having supported and cared for his own Mother through her diagnosis and death from FTD.

A prolific photographer, Paul and Janice decided to document every stage of her decline in the most real terms they new how, through daily photographs of the good and the bad. Paul shares this collection freely. Although challenging to relive, this is the first of it’s kind documenting in such thorough and gritty detail and has already been used by the NHS to further understand dementia and how best to care for those living with the disease.

For those living with or caring for someone with dementia, the reality of observing the future, or past in this medium can be challenging. In sharing Janice’s journey through Paul’s eyes we feel privileged to share a selection of images with Paul’s commentary.

For those who may want to see more of the Keeping Mum portfolio, please get in touch with Race Against Dementia.

Paul writes below:

A First
Keeping Mum is the worlds first photo story to document a rare and aggressive form of dementia from diagnosis to death. Over a three year period, Janice Elizabeth Middleton took part in a visual essay that compiled in excess of 20,000 images to better understand this little documented disease. From these 20,000, 3000 photographs have been identified for full edit.

With help from the Bob & Diane Fund, I photographed my mothers decline while caring for her at home, through various periods in hospital and in the residential care system in Great Britain. So far the methods of care and data they compiled together are already being implemented by palliative care personnel both in Britain and the United States. The project is being overseen and mentored by Sara Leen and has so far been published in part with National Geographic and in print and digital forms with various international publications. Keeping Mum has also appeared on television and radio and in 2021 will feature in ‘RANKIN’s 2020’, a globally published hard back that showcases some of the most compelling photographs from around the world in 2020.

Dementia is a thief. Picks disease, one of the rarest forms of dementia diagnosed at the present time, robs those it effects of everything including their ability to speak, move, control their bowels and eventually stops them from being able to swallow and breath.
New forms of the illness are being subcategorised as the science and medical community come to understand more about the disease that is blanket titled ‘dementia’. First hand information from carers in the field help further the understanding of dementia patients experiences and ailments. New methods of physical care also help gain insight for those who suffer idiomotor response during neurological decline. This aids not only with essential care such as feeding but in communication, morale and physical and mental

It is the intention that ‘Keeping Mum’ will contribute to a wider understanding
of the complex nuances and challenges of dementia and the pathophysiological links it has to other diseases. The project itself will be able to be utilised by families and carers and medical professionals alike to help advise and assist those who care for those who’s lives are touched by dementia. It may also help answer some questions for those who have recently been diagnosed with the disease and what they can expect on their own journeys.
One in three people will be diagnosed with dementia this year and it is set to become the worlds biggest killer.

With support from the Bob & Diane Fund more projects like this will be able to provide support and shed light on this currently incurable illness.

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