Dementia Action Week: Improving diagnosis and understanding of Parkinson’s-related dementia

To mark Dementia Action Week, we're calling on the UK government to provide vital support to people with Parkinson’s-related dementia, their families and carers.

Last November we published a report, "Nobody really knows us", exploring the state of health and social care for people with Parkinson’s-related dementia. The report's title reflects an unpaid carer's experience of the reality of navigating a health and social care system that is failing to meet the needs of people with the condition.

The theme of this year’s Dementia Action Week is diagnosis.

Troublingly, we found that even prior to the COVID-19 pandemic, people with Parkinson’s-related dementia had to wait an average of 6 months for a diagnosis. It is now highly likely that this wait is even longer. 

A lack of understanding

We know that at the heart of this issue is a widespread lack of understanding about Parkinson’s-related dementia among the health and social care workforce. 

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

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
  • only 29% of unpaid carers felt that paid carers in their home understood Parkinson's
  • only 25% of unpaid carers felt that paid carers in their home understood dementia.

Room for improvement around diagnosis

This lack of understanding is contributing to late or completely missed diagnoses. Our report found that people with Parkinson’s-related dementia also missed out on high-quality care and access to the vital financial, legal and emotional support that they're entitled to.

With overall dementia diagnosis rates falling to a 5-year low, it’s time for the UK government to address the long-standing challenges faced by people with Parkinson’s-related dementia. 

Urgent government action needed

We're calling on:

  • the UK government to allocate funding to train the social care workforce on Parkinson’s-related dementia
  • Health Education England to roll out basic training for health professionals on caring for people with Parkinson’s-related dementia. 

By investing in comprehensive training for the hard-working health and social care staff who provide this complex care, the UK government would ensure people with Parkinson’s-related dementia in England are supported by a well-equipped workforce and, critically, receive a timely diagnosis.