Parkinson’s UK calls for improved training on Parkinson’s-related dementia for health professionals

In July, Parkinson’s UK together with Alzheimer’s Society, Neurology Academy and the British Geriatrics Society asked people to sign a joint open letter calling on the UK government to fund training in Parkinson’s-related dementia for health professionals.

Nearly 1,000 people signed the letter, and on Wednesday 8 November, we handed it into the Department of Health and Social Care with 3 passionate volunteers from the Parkinson’s community.

People with Parkinson’s-related dementia and their carers as well as health professionals told us that a lack of training was impacting the quality of care people were receiving. They shared that:

• the care received by people with Parkinson’s-related dementia is rarely joined up
• only 25% agreed that the health professionals responsible for Parkinson’s care took account of the dementia aspect of the person’s condition
• only 14% of health professionals said their training had prepared them to provide high-quality care for people with Parkinson’s‑related dementia
• more training and education is needed so that quality of care can be improved.

Katie and Jim's story

Katie Herdman, who cared for her husband Jim near the end of his life, felt forced to act due to the lack of qualified support that had been available to them.

She said:

"It was an honour and a privilege to attend today’s letter hand-in. I believe there is a distinct lack of training and education for health professionals and carers in Parkinson’s dementia.

"I know firsthand the impact that this has on those living with Parkinson’s dementia and their loved ones. I strongly believe Jim’s and my experience could have been a lot less traumatic and distressing if I had been given the right professional support.

"Nurses and health professionals seemed to stay away from him because of their lack of understanding of his condition. The staff simply did not know how to respond."

What is Parkinson's-related dementia?

3 in 10 people with Parkinson’s have Parkinson’s-related dementia at any one time. And people with Parkinson’s are 6 times more likely to develop dementia than the rest of the population. Typically Parkinson’s-related dementia can cause problems with:

• memory and thinking problems
• disruptions to daily life and mood
• seeing or believing things that are not true (hallucinations and delusions).

Gini Dellow, Policy Manager at Parkinson’s UK, said:

"People with Parkinson’s-related dementia need high-quality person-centred care to meet their needs. The lack of training compounds the problems for people living with this condition and their carers. It also frustrates health professionals who want to deliver the best care possible.

"We believe that everyone deserves better. This has been echoed by the charities and 1,000 people who signed the letter. We, therefore, urgently want the UK government to fund the training needed for health professionals."

What’s next?

We have requested a meeting with officials from the Department of Health and Social Care and hope to persuade them to allocate funding for this much needed training.

This will help everyone who has Parkinson’s-related dementia to receive the high-quality, person-centred care that they deserve.