Failing to care for people with Parkinson's-related dementia

Our new report, 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.

What is Parkinson's-related dementia?

There are two main types of dementia that affect some people with Parkinson's Parkinson's dementia and dementia with Lewy bodies.

  • Dementia with Lewy bodies is diagnosed when someone has the symptoms of dementia either before or at the same time as they develop Parkinson's.
  • Parkinson's dementia is diagnosed when someone already has the motor symptoms of Parkinson's and dementia symptoms appear a year or more after.

Parkinson's-related dementia typically slows down a person's speed of thinking and can create problems with understanding, planning, judgement, language and memory loss.

At any one time, between 24% and 31% of people with Parkinson's are likely to have dementia.

People with Parkinson's have an increased risk of developing dementia. Research suggests that at least 75% of those living more than 10 years with Parkinson's will develop dementia.

What issues do people with Parkinson's-related dementia face with the health and social care system?

From interviews with people with Parkinson's-related dementia and their carers, as well as surveys of health professionals and carers, our report found:

  • People with Parkinson's-related dementia find it difficult to get a timely diagnosis, which they need to access the services they can use to live well.
  • 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.
  • 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 to get the care and support they desperately need.

What is Parkinson's UK doing to improve health and social care for people with Parkinson's-related dementia?

We have used the findings from our interviews and surveys with professionals and carers to produce a policy report with recommendations for government and health and social care decision-makers to improve care for people with Parkinson's-related dementia.

We will be campaigning and influencing for these recommendations to be taken forward. You can help by tweeting your MP and asking them to read the report and take action in Parliament.

The report focuses mainly on the health and social care system in England (though we do discuss dementia care in Northern Ireland, Scotland and Wales).

Our recommendations include:

  • The UK government must ensure that the recently announced £500 million of funding for training the social care workforce includes training on Parkinson's and Parkinson's-related dementia for social care staff involved in directly providing care.
  • Health Education England should develop basic training for non-specialist health professionals about caring for people with Parkinson's-related dementia.
  • Integrated care systems (all the organisations that meet health and care needs in an area) must work with NHS trusts to ensure people with Parkinson's-related dementia have access to a Parkinson's multidisciplinary team, with a clear referral pathway into neuropsychiatry and/or old age psychiatry.
  • All NHS acute hospital trusts in England must adopt the principles set out in the revised Dementia Friendly Hospital Charter and implement the changes needed.
  • Integrated care systems should fund and ensure training/education is available for unpaid carers on the neuropsychological and neuropsychiatric symptoms of Parkinson's-related dementia. This should include how to support the person with Parkinson's-related dementia if they are experiencing distressing delusions or hallucinations.
  • The UK government must work with local authorities to ensure there is adequate funding to provide unpaid carers of people with Parkinson's-related dementia with the breaks they need.
  • NHS Digital must publish diagnosis rates of dementia subtypes (including Parkinson's dementia and dementia with Lewy bodies) as part of the 'Recorded Dementia Diagnoses' monthly data set.

"By the time I got back, he'd had another fall in A&E. So they'd wedged him in a chair with a table in front of him, to stop him from standing up, but the lady in the bed next to him said to me, 'They've been shouting at him. Every time he tries to stand up, they're shouting at him to 'Sit still, we told you to sit still.' She said, 'It's not very kind.'"
Clare, carer of a person with Parkinson's dementia


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.

What can you do?

Tweet or email your MP to ask them to support the report's recommendations and take action in Parliament.