Parkinson’s is the fastest-growing neurological condition in the world. There are currently 153,000 people in the UK living with Parkinson’s and with population growth and ageing, this is likely to increase to around 172,000 people by 2030.
People with Parkinson’s are up to six times more likely to develop dementia compared to the general population, and three in 10 people with Parkinson’s have Parkinson’s-related dementia at any one time. It’s not talked about enough, and most people are afraid to start the conversation and are fearful of the outcome, including many healthcare professionals who feel ill-equipped. This results in limited access to treatment and support, creating a ripple effect with the absence of high-quality care to meet the needs of people with Parkinson’s dementia, impacting not only their wellbeing but that of their loved ones.
The care needs of people with Parkinson’s-related dementia can often be even more complex than other dementias because of the combination of movement issues and changes in cognition. Parkinson’s-related dementia typically causes problems with mood disruptions, memory, and thinking, including hallucinations and delusions. Add to these the general Parkinson’s symptoms, such as freezing, difficulty walking, and a higher risk of falling, and it’s easy to understand the complexities of caring for someone with the condition.
A lack of sufficient training means many health and social care professionals are unaware of Parkinson’s-related dementia and how to care for people with the condition. Just 14% of health professionals who have had training say it has prepared them well enough to provide high-quality care for people with Parkinson’s-related dementia (Parkinson’s UK report, 2021). The failure in training often forces carers of loved ones with Parkinson’s-related dementia to step up or step in to ensure they receive the quality of care they deserve.
Only 33% of people with Parkinson’s-related dementia received their Parkinson’s medication on time, every time while in hospital (Parkinson’s UK report, 2021). Plus, 59% of carers have had to provide care (such as feeding or explaining procedures) during their loved one’s stay in hospital (Parkinson’s UK report, 2021). This is unacceptable and a recipe for an epidemic of unpaid carer burnout.
And, that is why, in July 2023, Parkinson’s UK launched a joint open letter to the UK Government in partnership with Alzheimer’s Society, Neurology Academy, and the British Geriatrics Society, and nearly 1,000 people in the community calling for funding for training in Parkinson’s-related dementia for health professionals. Since the delivery of that letter in November 2023 and the subsequent Autumn statement, we’re yet to see any funding commitment by the UK Government.
It is an indisputable fact that this issue is only going to escalate. A collaborative effort is recommended via integrated care systems, NHS Trusts, Health Education England, and NHS Digital to inform, adapt, and advise on Parkinson’s dementia along with access to qualified Parkinson’s multi-disciplinary care teams and sufficient care models. Without this, people with Parkinson’s-related dementia and their loved ones will have to continue to contend with these challenges alone or with limited support.
Last year, The Parkinson’s Excellence Network, which is supported, funded, and facilitated by Parkinson’s UK and brings together health and social care professionals to transform care for people with Parkinson’s, collaborated with the University College London (UCL) on dementia toolkits for healthcare professionals. The project, Patterns of Perception in Parkinson’s (PoP-PD), was co-developed with people living with Parkinson’s and Parkinson’s UK.
Dr Rimona Weil, Consultant Neurologist at the National Hospital for Neurology and Neurosurgery and Neuroscientist at University College London (UCL), led the project. The project’s purpose was to assist in detecting and managing Parkinson’s dementia. It also aimed to further the understanding of the risk factors, symptoms, and assessments and educate healthcare professionals about treatment strategies, support, and what to discuss with patients.
The Parkinson’s Excellence Network and UCL’s efforts are a great start, but we also need to see action from the Government. It must invest in the training of health professionals in Parkinson’s-related dementia. It must happen urgently to future-proof care for people with Parkinson’s and their carers. High-quality training of professionals is the cornerstone to improving outcomes for people with Parkinson’s-related dementia. We have identified the need. It is now time to take action.
To read the full Nobody Really Knows Us report, visit the Parkinson’s UK website. For more information on the Parkinson’s Excellence Network and UCL’s toolkits for detecting and managing Parkinson’s dementia, visit our website.
Gini Dellow is Policy Manager (Mental Health and Dementia) at Parkinson’s UK. Email: [email protected] X: ParkinsonsUK