The Ageless Role of Unpaid Carers
I would never have described myself as a young carer or that I needed more support in my caring role when I was looking after and living with my Grandad. I thought of it more as giving back for the years as a child that my grandparents helped to look after me, collecting me from school or staying with them for periods of time. I now understand that the role that I did is one that so many young people take on and need more support with.
Unpaid Carers: A Thankless Task?
I would never have described myself as a carer as I know many of the family members supported at Sage House would not consider themselves carers either. Instead, we see ourselves as ‘just looking after’ our husbands/wife’s, parents/grandparents’ family or friends. At the time I was caring for my Grandad, I was single, in my early 20’s, working in a full-time role as a care home deputy manager. I worked my caring responsibilities around my 10-hour shifts, leaving flasks of hot drinks, sandwiches in the fridge and cooking a hot meal when I was at home with my Grandad. The care home’s policies where I worked were not flexible and because I was not caring for a direct relative (parent or child) the company policies meant that I was not allowed time off to help with my caring responsibilities, so if my Grandad needed to attend a medical appointment, I had to swap shifts or take annual leave, this was even the case for attending his funeral.
Twenty years on rights for carers have changed but being ‘a carer’ is still not a term that many would associate to themselves. In the UK 1 in 8 adults (6.5 million) are providing a caring role of which 1.3 million are delivering over 50 hours of care a week. These figures are estimated to have significantly increased during Covid-19 with approximately 13.6 million people caring for family members. (1) In addition, there are approximately 700,00 young carers in the UK (2) who may care for parents or grandparents. Like me when I was an unpaid carer, many are juggling their own family and employment alongside a caring role. Unpaid carers save the economy £132 billion every year.
Young Onset Dementia = Young Carer
The terms ‘young onset’ or ‘early onset’ dementia refers to people who have a diagnosis of dementia who are of working age and averages from 35-65 years old. There are over 42,000 people in the UK who are living with young-onset dementia (3). The reason for the younger diagnosis of dementia could be genetic or related to other health issues such as vitamin definitely, traumatic head injury or Alcohol (read our previous blog on this here) which is becoming more common as the cause of young onset.
For family, this means taking on a caring role at a much younger ages as partners and as children. The caring role in younger families has its own complications, where carers may be working, children are at school or college.
In the support that we offer at Sage House it can be a real conflict for the person who is diagnosed with dementia at a young age, they may still be working, trying to balance daily life and looking after their children. One lady supported at Sage House doesn’t want to make it known that she has a diagnosis of dementia, not through embarrassment, but more because she wants to continue with living her life for as long she can. In contrast her daughter very much wants to talk about her mum who has dementia, wants to find the right support for her and to get that in place as soon as possible. So, for their Wayfinder it is an incredible balance to ensure that both the lady with dementia’s wishes are adhered to but in addition that the daughter also feels fully supported as well.
One of our younger gentlemen diagnosed dementia has talked to us about his frustration, feelings of being inadequate, feeling that he is no longer the provider the caretaker the one that is there and is strong his family. He is extremely saddened by this and times finds his diagnosis very difficult to come to terms with. At the age of 57, he is father to three children and seven grandchildren, he is now supported by his wife and children as he is no longer able to drive, no longer able to work, and as his dementia is progressing, he’s finding at times daily living tasks extremely difficult. He finds that asking for help with personal care is extremely embarrassing and doesn’t want to burden his family with having to wash and dress him, and he fears in the future, having to feed him. In contrast his family are fully supportive they want to do whatever they can for the husband, for the dad and granddad who has done so much for them. They see it as their role, their duty to be there for him as he has been there for them in the past.
It is so important that the young carers are well supported with the caring roles, especially when they have a parent diagnosed with dementia. They not only have to keep up to date with school, which can be a task in itself, but also supporting with care, meal preparation and household chores. They need to be supported to take time out of these roles to spend time enjoying their own childhood. I volunteer for a ‘Young Carers’ group (4) driving teens to their weekly group. Even though I consider my role very small in that I might only spend an hour with a young person driving them to and from their group, this offers them an opportunity to get away from the role of carer and enables them to be a child or teen and do something for a few hours that they are at their group. As I wear this volunteer hat and leave my professional work hat at home, I am astounded at the levels of care that young people give to their families, without question they’re there for their family and provide all the support that they possibly can. Young carers can feel as lonely, frustrated and isolated as many of the adult carers looking after their spouse and need just as much, if not more, support to carry on with their own life.
“Wayfinders are Sticky People”
At Dementia Support we want to take as much of the caring responsibility from the carers to make their lives a little easier. Jacquie who is one of the Wayfinder’s at Sage House has been supporting a family of a gentleman diagnosed with dementia. Within the family group the wife is the main carer, the two daughters are secondary carers and the gentleman’s 2 grandchildren, while not direct carers are still providing support to the family. Jacquie has supported the family for 360 hours since October 2018. In a talk that the wife gave she described Wayfinders as ‘sticky people’ as they stick with you, and was thankful to have Jacquie helping her with information and emotional support for her and for the whole of the family.
Jacquie supported with general information around dementia, suggesting different activities for the gentleman to do that he found meaningful. She also supported them with more complex issues, including attending hospital discharge meetings and chasing issues within the care home that was offered respite and even supporting with the difficult conversation about end-of-life planning. In addition, Jacquie spent time with the gentleman’s 2 grandchildren to help them understand dementia and what was changing for their Grandad. The grandchildren were very accepting of the changes, but their concerns were focused on their mum and how they could best support her when she got upset when something was going wrong for her dad. More recently, one of the grandchildren wanted to be able to spend some time with his Grandad and sadly due to the lockdown’s has not been able to do that. Jacquie has supported the grandson by spending time sharing stories, which has enabled the grandson and the Wayfinder to find out more from each other about the gentleman.
One Person with Dementia Means More Than One Family Carer
Unpaid carers provide such a crucial role within the family and are saving millions of pounds in care, however, this crucial role that they are undertaking is not being recognised. Carers with loved ones in their 40’s-60’s may not only be providing that caring role but could also raising a family and working. For young carers who may be helping with looking after a parent diagnosed with dementia, the pressures can be immense. They are not only taking on an adult caring role but also growing up, going to school, and learning their own life lessons. Young carers need just as much support to take part in their caring role as the adult carers.
It is so important to remember that for every person diagnosed with dementia there is an average of 5 people in the family who are also providing informal care and support. The Wayfinders at Sage House, Dementia Support are here to help families and carers of all ages through all the challenges that they may be facing and hopefully some of the smile, laughs and fun times too.
*All photos are from Dementia Support Carers Week Celebrations in 2019 when we were able to pamper and treat our wonderful carers who look after their loved ones living with dementia.