Improving care for people with Parkinson's-related dementia
We know the health and social care system is failing to meet the needs of people with Parkinson's-related dementia. That's why we're campaigning to ensure people with the condition get the care they need.
There are 2 main types of dementia that can affect people with Parkinson's:
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Parkinson's dementia
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dementia with Lewy bodies.
We refer to these as 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.
Around 3 in 10 people with Parkinson's have Parkinson's-related dementia. And people with Parkinson’s are up to 6 times more likely to develop dementia compared to the general population.
What is the problem?
Despite being the third most common type of dementia, research we conducted shows health professionals don’t feel their training prepares them to care for people with Parkinson's-related dementia.
This impacts those who care for people with Parkinson’s related-dementia, who have to pick up the pieces.
What are we doing?
We're campaigning to make sure the government and health and social care decision-makers improve care for people with Parkinson's-related dementia.
In particular, we want to ensure there is dedicated training for health and social care professionals so that people with Parkinson’s-related dementia get the care they need.
Lindy's story
Lindy cared for her husband who had Parkinson’s and Parkinson’s-related dementia. She said:
"The challenge for someone living with life-changing Parkinson’s and Parkinson’s-related dementia cannot be underestimated.
"Their carer faces the daunting task of managing both at various stages of their progression, often ill-equipped and without the knowledge or training to do so, often without respite.
"That was my experience, and was that of many other carers I knew.
"Greater support and training for me would have benefited both of us. Today's carers should be highly regarded as a precious resource and given every assistance to carry out the selfless but often arduous task of their caring role."
How you can help
Help us to improve the care that people with Parkinson’s-related dementia receive by sharing your experience with us.
Join our movement of over 8,000 people. Support in various ways each month and make a difference to people living with Parkinson's.
Become a campaigner and join our team of volunteers creating change in their local area.
Charlie's story
"As my Dad’s condition progressed, caring for him became increasingly difficult and stressful and my family simply couldn’t manage by ourselves.
"We were lucky to get some care support and it was a lifeline. But the paid carers couldn’t provide the very complex care needed.
"We needed them because we didn’t know how to support Dad but often they knew much less than we did. The result was upsetting, frustrating and probably even dangerous at times.
"Other families must currently be having the same experience. It is vital that professionals supporting people affected by Parkinson’s dementia, are appropriately and adequately trained and have the knowledge and skills they need."
Pictured: Campaigners Charlie, Garth, Clare and John hand in our letter to the Department of Health in November 2022.
Read our report 'Nobody really knows us' (PDF, 2.3MB)
Our report found that the health and social care system is failing to meet the needs of people with Parkinson's-related dementia.
Get advice and support
Call our helpline and our trained advisers who can provide you with information and support on Parkinson’s-related dementia.
Visit our information to find out more about Parkinson’s-related dementia and memory problems.
Get in touch
We're here to answer any questions and give you any support around campaigning. Email the Campaigns team at [email protected].