‘Nobody really knows us’

A new report from Parkinson’s UK – Nobody really knows us – has found that the health and social care system is failing to meet the needs of people with Parkinson’s-related dementia.

  • 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.
  • Paid carers in the home and in care homes lack understanding of Parkinson’s-related dementia – as do healthcare professionals who don’t specialise or have a special interest in the condition. There is a clear need for improved training of care staff in Parkinson’s and Parkinson’s-related dementia, the report says.

 More details and recommendations at: www.parkinsons.org.uk/get-involved/failing-care-people-parkinsons-related-dementia