Page 16 - TalkCare_Issue5_Online.qxp_OACP Talking Care Issue 4 July 2017
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REAL LIVES|LONG TERM CONDITIONS|MOYRA’S STORY|PARKINSON’S UK
Carers of people with advanced Parkinson’s at risk of ‘burning out’
Latest figures show that 145,000 people have Parkinson’s in the UK, but with a condition that can impact on every area of a person’s life, it is inevitable that many more will be affected by Parkinson’s, including family, friends and carers.
Parkinson’s UK is the UK’s leading Parkinson’s research and support charity, and is there for everyone who is affected by Parkinson’s.
Earlier this year, the charity released research findings looking at the impact of Parkinson’s on carers, and as Laura Cockram, Head of Policy and Campaigning at Parkinson’s UK explains, the findings demonstrated a clear need for support for carers to be in place.
“Parkinson’s is a complex condition with more than 40 symptoms. Everyone can be affected differently and it can change from day to day, or even hour to hour, which comes with its own unique set of challenges for the person but also for their carer.
“We know the vital role carers play for people with Parkinson’s, so we wanted to know more about how Parkinson’s affects carers and if they are getting the support they need.
“The research focused on 115 carers of people with advanced Parkinson’s. It found that on average, carers were 70
years old and spending two-thirds of the day caring (16 hours), which is approximately 10 hours more than previously estimated.
“Carers were also taking on a number of duties. More than a quarter (26.4 per cent) reported having to nearly always watch the person they care for constantly, including throughout the night.
“Other caring tasks included help with cleaning (87.7%), cooking (84.2%), bathing (41.2%) and dressing (63.2%), offering advice and support (88.6%) and support with medication (89.5%).
“This gave us a really accurate picture for the first time of just how much carers are stepping up to support their loved ones, but the most worrying finding to come out of the research was that almost a third of carers of people with advanced Parkinson’s could be at risk from burning out.
“When asked to document the stress they were under because of their caring role, 69.2 per cent of carers indicated a need to seek respite care. An additional 30 per cent indicated a risk of burning out.
“This is particularly concerning as 45 per cent of the participants also reported having their own health conditions which impacted on their ability to care.
“That’s why it’s vital that the Government makes sure social care is well funded for the long-term and that councils are supporting carers by regularly assessing their needs and making respite care easy to arrange, to stop them from burning out.”
 Case Study: Moyra’s Story
Moyra Booth, 72, from Morpeth, Northumberland, looked after her husband Jack who had Parkinson’s for over twenty years. At one point she was caring for both Jack and her mother who was also disabled. Towards the end of Jack’s life Moyra had a period where she felt depressed, exhausted and ‘burned out’.
Moyra told us: At first I was helping Jack with mobility issues and dressing, but as his condition deteriorated he needed more help and often fell. In the last few years he also became doubly incontinent and needed help
with meals.
It was when Jack was diagnosed with Lewy bodies dementia that I started to become depressed and exhausted.
At the time, I felt drained by it all and I would often go sit in my greenhouse by myself.
About two years before Jack passed away he requested to go into the care home full time. I felt much better when he was in the home as it was less exhausting for me and I no longer worried about him falling and not being able to get up while I was at work.
Caring for a loved one with a progressive condition is so much harder than I anticipated. It’s like looking after a baby, but then it’s only going to get worse rather than better.
 16|OACP|TALKING CARE|ISSUE 5|2018











































































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