Improving care for people with Parkinson's-related dementia

Our 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.

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

What is Parkinson's-related dementia?

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.

Unlike other types of dementia, people with Parkinson’s-related dementia may have to manage both movement symptoms, such as tremor, alongside cognitive symptoms.

There are 2 main types of dementia that can affect people with Parkinson's: – Parkinson's dementia and dementia with Lewy bodies.

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

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

Despite it being the third most common type of dementia, only 14% of health professionals surveyed told us that their training had prepared them to care for people with Parkinson's-related dementia.

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-related dementia

Unpaid carers of people with Parkinson’s-related dementia play a crucial role in supporting their loved ones.

But despite the intense pressure they face, they are 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 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

This has severely impacted unpaid carers’ mental health, with over 60% experiencing anxiety or depression. This is compounded by the fact that only 25% surveyed felt that social care staff in their home understood the needs of their loved one with dementia.

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.

The report’s recommendations aim to improve the care people affected by Parkinson’s-related dementia, including calling for:

  • Dedicated training for health and social care professionals
  • Respite for unpaid carers, and 
  • Publication of the diagnosis rates of Parkinson’s-related dementia 

We will be campaigning for these recommendations to be taken forward.

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.

Share your experience of care

Tell us your experiences, good and bad, of dementia care, which we will use to influence decision-makers.