NATIONAL charity Parkinson’s UK has this week launched a survey to better understand how unpaid carers experience the health and social care system. The findings will help the charity identify and formulate recommendations for the Government and NHS to urgently improve the quality of care for people affected.
The survey is urgently needed as the charity has found too many instances of poor quality and limited support available for unpaid carers. People with Parkinson’s related dementia feel the effects of a broken social care system and find it difficult to access care that meets their needs. This is also being exacerbated by a lack of understanding of the condition among care professionals.
Parkinson’s is the fastest-growing neurological condition in the world, and approximately 145,000 people live with it in the UK. There is currently no cure, and it is unknown why some people will develop Parkinson’s dementia as a symptom of living with the condition. It is estimated that up to 30% of people with Parkinson’s have dementia at any one time.
Someone with Parkinson’s dementia may experience and present with very different and unique symptoms, and they can also fluctuate from hour to hour. They might experience memory difficulties, sleep disturbances, appetite changes, and changes in their mental health, such as increased frequency of hallucinations and delusions or experience anxiety and depression. Often, especially in the early stages, these symptoms can be difficult to detect. Therefore, it is critical that carers are well equipped and supported to provide the best possible care.
Over lockdown and during the coronavirus pandemic, the charity expects the number of people who have taken on unpaid caring roles to have greatly increased as people have sought care from those in their households and support bubbles.
Sam Freeman Carney, Senior Policy Adviser at Parkinson’s UK, said:
“Parkinson’s is an incredibly complex condition with over 40 symptoms and affects everyone differently. We hope that this survey will help us paint a better picture of the realities and experiences of both unpaid carers and people with Parkinson’s dementia who receive care from loved ones. We know that there is an existing gap in support available across health and social care systems, and increasingly the burden of care falls on the shoulders of individuals and their families and all too often, they are not supported enough.
“It is our aim that the responses and data we collect now will feed into a report produced later in the year which will identify the changes needed to improve care and offer recommendations to the Government, NHS and social care to improve the experiences of unpaid carers and ultimately the people they care for.”
If you are a carer of someone with Parkinson’s Dementia, please complete the survey.