Photographer documents mother's dementia in 'world first project'

Caring son records his mother’s descent into dementia by taking 20,000 poignant photos of her lockdown battle against rare form of the disease

  • Paul Bayfield’s mother Janice Middleton was diagnosed with Pick’s Disease at 70
  • Pick’s Disease, or Frontotemporal Dementia, impacts the front and sides of brain
  • Photographer Mr Bayfield documented her condition from diagnosis to death 

A caring son has documented his mother’s tragic descent into a rare form of dementia by taking 20,000 poignant photographs during her battle with the degenerative condition.

Photographer Paul Bayfield spent the last three years documenting his mum’s life from her diagnosis of the rare ‘Pick’s Disease’ to her death.

But like many things, his project, which he hopes will improve research and treatment into the condition, was impacted by the Covid-19 pandemic.

Despite lockdown restrictions and his mother’s deteriorating health, Paul found ways to continue to document her illness right up until her death last month.

His project, named ‘Keeping Mum’, is believed to be the first in the world to document Frontotemporal Dementia from diagnosis to death.

And Mr Bayfield says it has led to new forms of treatments for the condition being explored and implemented by the NHS and in the United States.

Photographer Paul Bayfield spent the last three years documenting his mum’s life from her diagnosis of the rare ‘Pick’s Disease’ to her death

His project, named ‘Keeping Mum’, is believed to be the first in the world to document Frontotemporal Dementia from diagnosis to death

Mr Bayfield says it has led to new forms of treatments for the condition being explored and implemented by the NHS and in the United States

What is Pick’s Disease and who does it impact?

Pick’s Disease, also known as Frontotemporal Dementia, is an uncommon type of dementia that causes problems with behaviour and language.

As the name suggests, it affects the front and sides of the brain (the frontal and temporal lobes).

Like Alzheimer’s, one of the most common forms of dementia, frontotemporal dementia is caused by clumps of abnormal protein forming inside brain cells.

These are thought to damage the cells and stop them working properly.

It’s not fully understood why this happens – and the NHS say lots of research is being done into the condition – but there’s often thought to be a genetic link.

Around one in eight people who get frontotemporal dementia will have relatives who were also affected by the condition. 

Other forms of dementia mostly affects people over 65, but frontotemporal dementia tends to start at a younger age.

Most cases are diagnosed in people aged 45-65, although it can also affect younger or older people.

Like other types of dementia, frontotemporal dementia tends to develop slowly and get gradually worse over several years.

There’s currently no cure for frontotemporal dementia or any treatment that will slow it down. 

Source: NHS.co.uk 

Mr Bayfield, a photojournalist who previously lived in London, first knew something was wrong with his mum Janice Middleton when speaking to her while on an assignment in Sri Lanka.

The pair later sat down to discuss his idea for the creative journey.

That day, at the age of 70, Miss Middleton, from Dereham, Norfolk, was diagnosed with Pick’s Disease, a rare and aggressive form of dementia. 

The pair began the project and Mr Bayfield moved into his mother’s home to be her full-time carer.

Mr Bayfield said: ‘We just had a frank chat. I brought my camera and took a few pictures. We tried to turn it into something good.

‘There is very little research about this particular form of dementia.

‘We decided to create a story and answer questions for those going through the same thing.

‘It’s very different creating a personal story.

‘As a documentary photographer I’m used to separating myself from it and it was a bit of a good defence mechanism, a camera can be a way of separating yourself and a bit of a shield.’ 

The photos follow Miss Middleton from the good hours and moments to the isolation of lockdown.

He said: ‘It’s how it starts, good days and bad days and it becomes good hours and bad hours.

‘It’s like a computer being taken apart bit by bit.’

This year Mr Bayfield received funding from the Bob and Diane fund, which was set up by Gina Martin, of National Geographical Imaging, who lost both her parents to dementia.

The fund gives grants to storytellers documenting the first hand account of the disease.

He said the grant received from the Bob and Diane fund allowed him to be a carer long term.

But during the project Miss Middleton’s condition deteriorated quickly.

She lost her ability to speak early-on and to combat this started learning British Sign Language. 

Miss Middleton, from Dereham, Norfolk, was diagnosed with Pick’s Disease, a rare and aggressive form of dementia, at the age of 70

Miss Middleton was taken into a care home during the project and Mr Bayfield had to improvise after the country went into lockdown

During the project Miss Middleton’s condition deteriorated quickly. She lost her ability to speak early-on and to combat this started learning British Sign Language

With meetings happening through the window Mr Bayfield began using memory triggers such as eating beside the patio door window to help her remember how to eat

For the family, the pandemic hit when Ms Middleton was staying in a care home for rehabilitation after contracting aspirated pneumonia.

She fell ill earlier this year and was taken to hospital. 

In the run-up to lockdown, Mr Bayfield continued to care for his mum at the home.

But he was later told a four-month mandatory lockdown was to be implemented at the care home, a week before national lockdown came into force.

‘Nobody coming in, nobody coming out,’ said Mr Bayfield.

‘We started improving what we could do from the outside.’

The difficulty he faced was the change in continuity and increase in his mother’s confusion.

With meetings happening through the window Mr Bayfield began using memory triggers such as eating beside the patio door window to help her remember how to eat.

In the run-up to lockdown, Mr Bayfield continued to care for his mum at the home, but was later stopped from doing so due to the lockdown

Miss Middleton was staying in a care home for rehabilitation after contracting aspirated pneumonia. She fell ill earlier this year and was taken to hospital.

As the months went on Miss Middleton’s condition deteriorated, losing body mass and being taken to hospital for pneumonia and a heart attack, illnesses associated with dementia

He said: ‘With Pick’s, when they have lost their ability to speak they can often still sing as it’s a memory trigger.

‘I would set up a table outside the patio window and I would take a meal time for myself and that would trigger a memory in her.

‘She would start to eat with me.’

As the months went on Miss Middleton’s condition deteriorated, losing body mass and being taken to hospital for pneumonia and a heart attack, illnesses associated with dementia.

Miss Middleton died on October 12 at York House, in Dereham, with her son by her side.

The 40-year-old said the project is not over and aims to produce educational materials and a book in future.

A funeral service was held at Horsham St Faiths crematorium on Saturday.

In her memory, Mr Bayfield asked is anyone could donate to the Bob and Diane fund by visiting bobanddianefund.org

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