Young Adult Carers in the UK - The Princess Royal Trust for Carers

overcome this difficulty. In some instances the person receiving support was reluctant to accept
help from an external agency, preferring their own son or daughter to do this. For example
Jodie, aged 24, said of her mother who has severe epilepsy:
“I’m trying to get someone like a more professional carer that can be with her even more
than I can, because obviously soon I’m not going to be able, I’m expecting another baby
so I’m not going to be with her as much, and it is harder getting down there [every day]
as much as I do because I’m living the other side of town from her, but she’s funny about
having someone else do it, having a professional carer, she wouldn’t want that, a stranger
in the house”.
What was clear from many participants in this study was that they were unaware of what
help may be available to support their relatives, how to access it and who supplies it. It was
often difficult for our participants to advocate on behalf of the person they care for or suggest
to them that they seek extra support which in turn might reduce their caring responsibilities.
�e type and frequency of caring tasks
Chapter 4 Managing caring tasks and responsibilities
Each participant was presented with a list of 35 potential caring tasks that had been derived
from previous research literature on young carers and adult carers. They were asked to
identify whether they performed any of these tasks ‘sometimes’, ‘a lot of the time’ or ‘never’.
Two thirds of our participants said they performed household tasks ‘a lot of the time’
(cooking, cleaning and shopping). Whilst undertaking such tasks is probably not unusual
for young adults as it is more expected that they will contribute to the running of a home
what was more unusual was that just under two thirds were providing emotional care ‘a lot
of the time’. This consisted of keeping the person being supported company and supervising
them (‘keeping an eye on them’) – this was the task that many participants found particularly
arduous and which restricted their participation in other life events and activities. About a third
of our participants were providing practical support, for example paying bills, filling in forms
and writing letters or emails. Just under a third of our sample were providing personal and
intimate care ‘a lot of the time’ which included helping the person they supported to wash
or take a bath.
In addition to the roles and responsibilities that they frequently undertook, many of our
sample also had to perform a range of these and other caring tasks ‘some of the time’,
for example administering or reminding the person they supported to take medication,
preparing family meals, collecting library books or special foods, caring for siblings including
taking them to and from school, taking the person they supported out, giving medication etc.
For example, Kyle, aged 18, who cares for both his mother and disabled brother summarised
what he did for his mother:
“The biggest thing would be keeping my mother company, somebody there for her, making
sure she’s safe, make sure she’s happy, she’s got what she wants basically and around that
it would be washing her, dressing her, make sure she’s got a meal if she wants a meal or a
snack, she’s happy to feed herself, she’s got no problems with that, moving her from one
room to another, if she wants to sit up or lay down, from the living room to the dining room
for food…I do all the cooking, I do the cleaning for her, for the simple fact the others can’t
cook anyway”.
There was evidence that some young adult carers have substantial demands placed upon
them, in that they perform a number of caring tasks ‘a lot of the time’ and many other tasks
‘some of the time’; whilst other young adult carers are having to perform a lot of caring tasks
‘some of the time’ and others ‘a lot of the time’. This means that many young adult carers
in our sample are finding themselves performing a range of caring responsibilities that take
up a considerable amount of their waking (and sometimes, sleeping) hours and, therefore,
it is unsurprising that they often identify that one of the worst aspects of caring is having
so little time for themselves and the necessity of juggling competing demands, or having
to plan their lives carefully which inevitably inhibits spontaneity. Crisis points can also prove
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