A new report from PIF member Parkinson's UK says the health and social care system is failing to meet the needs of people with Parkinson's-related dementia.

Nobody really knows us draws on interviews with people with Parkinson's-related dementia and their carers, as well as surveys of health professionals and carers.

Around three in 10 people with Parkinson's have Parkinson's-related dementia at any one time.

People with Parkinson’s are up to six times more likely to develop dementia compared to the general population.

Experiences of people with Parkinson's-related dementia

Key findings from the report include:

  • People with Parkinson's-related dementia find it difficult to get a timely diagnosis.
  • Paid carers lack understanding of Parkinson's-related dementia, as do healthcare professionals without a specialism in the condition. 
  • When people with Parkinson's-related dementia are admitted to hospital for a reason other than their dementia or Parkinson's, they often receive poor quality care.
  • Carers are struggling to cope due to a lack of support, and little or no guidance on how to support their loved one when they experience distressing hallucinations or delusions.
  • People with Parkinson's-related dementia and their families, friends and carers are facing an uphill struggle trying to navigate the social care system.


Parkinson's UK has launched a campaign to improve care for people with Parkinson's-related dementia.

Recommendations include:

  • Ensuring funding for the social care workforce includes training on Parkinson's and Parkinson's-related dementia.
  • Health Education England developing basic training for non-specialist health professionals about caring for people with Parkinson's-related dementia.
  • All NHS acute hospital trusts in England adopting the principles set out in the revised Dementia Friendly Hospital Charter.
  • Integrated care systems ensuring training and education is available for unpaid carers on the neuropsychological and neuropsychiatric symptoms of Parkinson's-related dementia.
  • NHS Digital publishing diagnosis rates of dementia subtypes as part of the Recorded Dementia Diagnoses monthly data set.

Click on the link below to find out more about the campaign and download the report in full.

Parkinson's UK