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Parkinson’s Disease Society funds research into residential care

The Parkinson’s Disease Society (PDS) has invested almost £60,000 in the first-ever study looking at the experiences of people with Parkinson’s living in residential care in England.

The 18-month study, being conducted by researchers at the University of Bradford, was commissioned by the PDS to help improve the quality of care for people with Parkinson’s living in residential care. It is not known exactly how many people with Parkinson’s are in care homes in England, but American research suggests about five to 10 percent of care home residents have the condition.

As a fluctuating neurological condition with a range of motor and non-motor symptoms, the later stages of Parkinson’s can be particularly complex, making care planning difficult. The PDS is keen to investigate how care is designed and what people’s experiences of the residential care system are, in order to campaign for improvements in care home standards and to provide better support and information to make caring for people with Parkinson’s easier for care home managers and staff.

Gerry Armitage, currently seconded from the University of Bradford’s School of Health Studies as Senior Research Fellow to the Bradford Institute for Health at Bradford Hospitals NHS Trust, will be leading the study. The research will involve interviews with people with Parkinson’s and their relatives about how their residential and nursing care needs are being met. This information will then be compared to the formal care planning process in their residence, gleaned from an in-depth review of relevant documentation and interviews with care home staff.

Mr Armitage said: “People with Parkinson’s disease have changing needs that often demand considerable understanding. This research should provide an opportunity to have a close look at how these needs are being met, and how their care is organised.

“Interviewing the person with Parkinson’s where possible, as well as their closest relative – often their most experienced carer prior to being in residential care, and comparing their views with the care plan should provide us with some useful data.

“We hope the study in itself will promote further learning for all those engaged in residential care and convince those specifically involved in Parkinson’s care that the PDS and their research colleagues are beginning to shed more light on this sometimes neglected area.

“Research such as this may also provide a greater general insight into residential care – which accommodates almost 500,000 people in the UK, whatever the resident’s problems.”

Dr Kieran Breen, Director of Research and Development for the Parkinson’s Disease Society, said: “Parkinson’s is a complex condition, particularly in the later stages, and very little research has been done into the experiences of people with Parkinson’s living in residential care. However, we know from our members that the standard of residential care for people with Parkinson’s is an important issue – in a recent PDS survey more than seven out of 10 members identified improving understanding of Parkinson’s among care home staff as a priority.

“This research is a great opportunity for us to identify the key issues in care homes and to work with care home managers and staff to discover how to provide the best possible level of care for people with Parkinson’s in residential care throughout the UK.”

Grace Henderson | alfa
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