What is it like to be a young adult in a family affected by a neurological illness?
What is it like to be a young adult in a family affected by a neurological illness?
Patricia Masterson Algar (School of Health Sciences Bangor University, UK) p.m.algar@bangor.ac.uk @PMasterson_80
Source: Masterson-Algar P & Williams S. 2020. ‘Thrown in to the deep end’: mapping the experiences of young people living in a family affected by a neurological condition. Qualitative Health Research: doi.org/10.1177/1049732319900498.
Patricia Masterson-Algar, a health researcher from the School of Health Sciences in Bangor University has spent time with a group of young adults who have a parent with Multiple Sclerosis, Stroke or Dementia.
They talked about their parents’ illness, the impact it has had on their lives and where they have found support.
This is what young adults had to say…
“These
illnesses
impact ALL aspects of our lives…”
Sharon, 23 (dad with Dementia)
The illness has shaped me
“I knew the second he had it, ‘I’m not going to university in September’ Family does come first in these situations, I had to stay at home”
Rhys, 20 (dad with stroke)
“It made me who I am today, and I wouldn’t be as motivated or as … able to take everything that goes completely [wrong] and go… I’m fine with this”
Stuart, 22 (dad with MS)
Unless you’ve been through it, you can’t understand it
“’What does your dad do?’ I just say, ‘He’s disabled, he doesn’t work.’ It’s crazy, I think some people feel quite uncomfortable. They don’t know what to say”
Liam, 24 (dad with stroke)
“The amount of times I’ve gone down the street with mum and someone has said to her, ‘You’ve got MS? Nah!’ They are simply thinking of it, like,
‘Oh, she hasn’t got crutches. She hasn’t got a wheelchair or a mobility scooter so she can’t have it’”
Josh, 21 (mum with MS)
I have been ‘thrown into the deep end’
“We never received anything, any leaflets, any phone calls, anything. It was all related to groups for my dad, for my dad to meet new people, my dad to socialise, but never, never for the family” Liam, 24 (dad with stroke)
“We got given a bunch of leaflets and phone numbers, which were no use to us at the time or even today. You get a name of what is wrong but no instructions on how to cope”
Ceri, 22 (dad with Dementia)
I need to talk about this
“Some people feel like it’s a sign of defeat or weakness if you’re asking for help, but it makes you feel a lot better if people reach out to you”
Jess, 17 (mum with MS)
“By the time I was less ashamed to tell people about it, I felt that it was too late to get any real help for it. It had already moulded my character and was ingrained into my mental health”
James, 22 (mum with MS)
Where do these young adults go for support?
Young people explained it using ‘Lego’!
They often find support in their ‘healthy parent’, as one young man explained…
Source: Masterson-Algar & Williams 2020
“So, when my dad was diagnosed (with MS), she (mum) really took it upon herself to shelter me from it as much as possible. My mum is there at the front. I’m the king, there, at the back on the elephant. The elephant is a distraction.
‘The elephant in the room’. You don’t talk about it.’”
Ian, 18 (dad with MS)
A young woman explained how she feels supported by:
Her Knowledge
“I prefer to know what’s going on physically and that helps me understand what’s going on psychologically, emotionally”
Facebook
“There’s this page for people going through the same thing. It reinforces the fact that you’re not alone”
Source: Masterson-Algar & Williams 2020
Friends and family
“They are the last resort, you don’t want to tell your friends everything because you want a separate life to the dementia life”
What needs to change?
Young people with caring responsibilities should not be expected to ask for help, help should ‘come to them’
Schools, colleges and universities should:
• Play a key role in identifying young carers
• Provide opportunities for students to speak openly about the impact of these illnesses on everyday life
Charities and service providers should:
• Organize peer support that is tailored to these young adults
• All support initiatives need to look at the ‘family as a whole’
