Improving health and care services for people affected by Parkinson's-related dementia

We've launched a new report, Nobody really knows us  the state of health and social care for people with Parkinson’s-related dementia.

The report demonstrates the scale of the challenges that people with Parkinson's-related dementia face right from the outset of their diagnosis and makes recommendations to improve health and care services.

It's based on extensive interviews with people with Parkinson's-related dementia and their carers, and a survey of carers and healthcare professionals, including Parkinson's nurses, geriatricians, physiotherapists and neurologists. 

We were delighted to welcome experts from across the health and social care sector to the report's launch on 23 November, including representatives from dementia charities. The meeting heard from:

  • Rachael Maskell MP, Shadow Minister for Civil Society, about the opportunities for change the report presents and the challenges she has seen as a constituency MP.
  • Caroline Rassell, Parkinson’s UK's CEO, who shared the key findings of the report and urged decision-makers to take action on them.
  • Admiral Nurse Rachel Thompson, who spoke about how reform can support better Parkinson's dementia care.
  • Barbara Deering, who gave a powerful account of her experience of caring for her husband Barney, who lived with Parkinson's-related dementia.

Nobody really knows us

Around 3 in 10 people with Parkinson's have Parkinson's-related dementia, with people with Parkinson’s up to 6 times more likely to develop dementia compared to the general population.

Despite this, the health and social care system is failing to meet their needs and the needs of their family, friends and carers. 

"I got taken into hospital last year by ambulance because they thought I was having a heart attack…'What are your mum’s problems?' 'She has got Parkinson's, she has got Lewy body dementia.' 'Never heard of that. Is that a thing?' he went...'we’ll put down she has got Alzheimer's.' ...I just thought that was quite bad really."
Georgina, who has Parkinson's dementia

People with Parkinson's-related dementia need support from a wide range of health and care professionals. Unfortunately this care is rarely joined-up and often doesn't account for their specific needs. 

Our report reveals that they have to wait an average of 6 months to receive a dementia diagnosis, and that only 14% of the health professionals surveyed reported that their training has equipped them well to care for people with Parkinson's-related dementia.  

This leaves people affected by Parkinson's-related dementia feeling as though 'nobody really knows us'. More professionals require training in Parkinson's-related dementia so peoples' needs are understood.

Impact on unpaid carers

Unpaid carers of people with Parkinson's-related dementia play a crucial role in supporting their loved ones on a daily basis and helping meet their health and care needs. 

But despite the intense pressure they face, they're not receiving enough support for their own needs.

Over half of the carers we surveyed are providing more than 70 hours of direct care each week, yet only 15% had accessed respite care. This has severely impacted carers' mental health, with over 60% experiencing anxiety or depression.

"This additional 3 hours, when the carer came, was supposed to be respite for me and the day centre, yes, but it wasn't, because I was so exhausted getting him there. I'd go home and I'd have a cup of tea, and then I was waiting for the phone to ring, because I knew that she was going to ring me, and she did, saying please come and get him, we can't cope with him, so it didn't work out."
Janine, carer of a person with Parkinson's-related dementia

Minister welcomes our report

Gillian Keegan MP, the Minister of State for Care and Mental Health, has responded to the report: "I welcome the report and its findings and commend the work of Parkinson’s UK in supporting people with Parkinson’s. I am grateful for your continued work with the Department of Health and Social Care and the NHS in this space and look forward to further collaborative work to support people with Parkinson’s-related dementia.

"We want a society where every person living with dementia, and their families and carers, receives high quality, compassionate care, from diagnosis through to end of life. We will be setting out our plans on dementia for England for future years in due course.

"We will design our dementia strategy to be suitable for people living with all subsets of dementia. Our objective is to join up health and care around people to meet the needs of individuals, giving them personalised care to help them live life to the full."

Get involved to improve health and social care 

The report's recommendations aim to improve care for people affected by Parkinson's-related dementia. They call for:

  • dedicated training for health and social care professionals
  • funding for carers' education
  • respite for unpaid carers
  • publication of the diagnosis rates of Parkinson's-related dementia.

We're calling on decision-makers to act now so the health and social care system can deliver high quality, person-centred care for people with Parkinson's-related dementia and better support for carers. 

Help us ensure that improving care for people affected by Parkinson's-related dementia is high on decision-makers' agendas. Ask your local MP to support the report's recommendations.

Read the full report

Download the report to read more about the problems people with Parkinson's-related dementia face and our recommendations on how to improve health and social care.