New law to increase support for unpaid carers in Scotland must deliver real changes
Unpaid carers are working gruelling 16 hour days at the age of 70.
That’s the claim of Parkinsons UK which says a new law to increase support for unpaid carers in Scotland must deliver real changes.
New research supported by the charity found that unpaid carers of people with Parkinsons – with an average age of 70 - were typically providing care for the majority of their waking hours.
The study details the scale of the support that unpaid carers routinely provide for partners and family members with Parkinson’s. It found that around four in every five unpaid carers do not receive any formal social care support.
Marysia Williamson of the Parkinson’s UK West Lothian Support Group cares for her partner John, and also organises support courses for fellow unpaid carers.
She sais: “The stories told by many people are heartbreaking. Because people live with Parkinson’s for a long time, the strain on carers can be intense and almost unbearable. Isolation and depression amongst carers is common and for some people it can reach the point where they are struggling mentally and physically to carry on caring.
“Although John and I are comparatively young in Parkinson’s terms there are still moments, especially if there are a few sleepless nights in a row, when you are crying out for a break and a bit of respite from the responsibility. Most of the time you just get on with it but there are times when it is very difficult. And I know from seeing and talking to other couples that as we get older it will not get easier.”
Parkinson’s UK in Scotland believes the Carers (Scotland) Act - which from April sets out mandatory support that local authorities must provide - has the potential to transform the lives of unpaid carers supporting people with Parkinson’s.
However, the charity warns that the local authorities and integrated joint boards responsible for delivering carers support must deliver meaningful changes to local support.
Annie Macleod, director of Parkinson’s UK in Scotland, says: “There are more than 12,000 people with Parkinson’s, and numbers are increasing. This research shows that unpaid carers are taking on an extraordinary workload to provide the support and care needed – and they are at risk of burning out without more support.
“People often don’t see themselves as carers, so it is essential that local authorities and health and social care partnerships seek out and identify Parkinson’s carers at an early stage, and continue to work with them so that they can access the support they need as their support needs change.
“Local authorities now have a statutory duty towards carers and have had time to prepare for the implementation of the new legislation in April. Parkinson’s UK believes that the new support structures with increased focus on respite breaks and increased contact with carers are vitally needed for those caring for people with Parkinson’s. It is essential that local authorities deliver.”
Parkinson’s symptoms become more complex over time, and typically come to affect every aspect of a person’s life.
Mobility and balance issues, bladder and bowel problems and communication issues can combine with mental health symptoms and dementia to cause major challenges and put enormous strain on carers.
Most unpaid carers of people with advanced Parkinson’s are their partner and these carers are typically older and therefore more likely to be experiencing their own health problems.
