New report on Parkinson's-related dementia from Parkinson's UK: Nobody really knows us

A new report from Parkinson’s UK, Nobody really knows us - the state of health and social care for people with Parkinson’s-related dementia, reveals that the needs of people with Parkinson’s-related dementia, their family, and friends are being neglected.

Around three in 10 people with Parkinson's have Parkinson's-related dementia at any one time, with people with Parkinson’s up to six times more likely to develop dementia compared to the general population. Despite this, the health and social care system is failing to meet their needs or those of their family, friends, and carers. Getting the right care, treatment, and support at the right time can be life-changing for people with Parkinson’s-related dementia, but too often, this is not the case.

The report is based on extensive interviews with people with Parkinson’s-related dementia and their carers, as well as surveys of carers and healthcare professionals. It demonstrates the breadth of challenges that people with Parkinson’s-related dementia face right from the outset of their journey and puts forward solutions to bring about much-needed change.

People with Parkinson’s-related dementia regularly interact with many elements of health and social care, yet they feel “nobody really knows us.” More professionals require training in Parkinson’s-related dementia so that people’s needs are understood.

The report reveals that people with Parkinson’s have to wait an average of six months to receive a dementia diagnosis, and that only 14% of health professionals report that their training has equipped them to care for people with Parkinson’s-related dementia. Worryingly, around a quarter of carers surveyed reported that health professionals responsible for Parkinson’s care did not understand and take account of the person they cared for having dementia.

Unpaid carers of people with Parkinson’s-related dementia play a crucial role in supporting their loved ones with day to day living and helping meet their health and care needs. Yet we found they are not receiving enough support for their own needs from the health and care system. 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 has severely impacted carers’ mental health, with over 60% experiencing anxiety or depression.

The report’s recommendations aim to improve the care people affected by Parkinson’s-related dementia, including dedicated training for health and social care professionals, funding for carer education, respite for unpaid carers, and publication of the diagnosis rates of Parkinson’s-related dementia. Parkinson’s UK are calling on decision makers to take action now so the health and social care system can deliver high quality, person-centred care for people with Parkinson’s-related dementia and better support for carers.