John joins campaign calling for better social care for people with Parkinson’s-related dementia

John Bewley has joined the ‘Nobody Really Knows Us’ campaign. Both his parents were diagnosed with Parkinson’s-related dementia.

More than 1,200 postcards, signed by carers of people with Parkinson’s-related dementia, have been delivered to Whitehall as the campaign wants the Government to allocate some of the £500million it has pledged to upskill the social care workforce to equip workers with the right skills to help people with the condition.

John said both he and the carers of his parents lacked any training in dementia, which he called “extremely challenging”.

However, he says despite that, they worked as a team and he considers himself to have been one of the “lucky ones” to have received good healthcare for his mum and dad.

They were both initially diagnosed with Parkinson’s, which later developed into Parkinson’s-related dementia.

His dad, Bill, died in 2008 aged 80 and his mum, Margaret, died in 2016 aged 79.

John said: “None of my parents’ paid carers had received formal training on how to deal with Parkinson’s dementia. I was so lucky they helped us despite this and how challenging it was.

“My mum ultimately lost the ability to do even any kind of basic tasks and had problems with hallucinations. Her behaviour could be unpredictable and, at times, quite aggressive, which was so unlike her.

“It was really hard to take. Looking back, I wish the carers had had help too.

“Certainly with my mum, I had quite a leading role in delivering her care for her. I was her main carer in the later years of her life and helped mum to care for dad.

“I’ve seen first hand the effects of it on the person and myself as a carer – and on the other carers too.”

He added: “We ultimately worked as a team together, but none of us had any training on how to look after someone with dementia and the challenges that we faced, and how to mitigate them and deal with them, given how stressful it can be.

“Also how emotionally draining it can be and helpless you can feel, to be honest, for most of the time. So I hope this campaign is successful and can help to deliver the training to the people that need it.

“Ultimately, I was very fortunate with the care package for both mum and dad. We had wonderful carers, and were also able to rely on the support and insight of an excellent Parkinson’s nurse and her team, but I appreciate not everyone is as lucky.”

A 2021 study by Parkinson’s UK showed that just 14 per cent of health professionals felt that their training had prepared them well to provide high-quality care for people with Parkinson's-related dementia.

A further 58 per cent said their training was adequate, but they needed more.

The same study showed the impact of that lack of training – with just a quarter of carers of people with Parkinson’s-related dementia feeling that social care staff understood their needs, while some were given no help at all.

For more information about the campaign, go to www.parkinsons.org.uk/get-involved/improving-care-people-parkinsons-related-dementia