Who are 'young carers'?
Are you a young carer? These are children and young people under the age of 18 who provide care and emotional support to a family member who is physically or mentally ill or disabled (Clay et al, 2016). Young people who continue caring after the age of 18 are known as ‘young adult carers’. There are approximately 376,000 young adult carers in the UK (Carers Trust, 2020). The precise figure is not known because young people may not recognise themselves as carers if they view their caring activities as part of ordinary family life (Kelly et al, 2017). Alternatively, they may not want to make this role known because of the stigma that can be associated with caring for others (SCIE, 2005).
What do ‘young adult carers’ do?
The responsibilities of young adult carers include household tasks, facilitating communication, chaperoning and supervising the unwell person, liaising with healthcare staff and assisting with medication and personal care (Boyle, 2020). As young people may be supporting a parent with dementia, there can be particular concerns about his/her forgetfulness, speech changes, safety and perhaps behaviour. There are over 44,000 adults in the UK with young onset dementia (which develops before the age of 65) (Burns, 2017). As the parent may be unable to work the young person may also be worried about the financial impact on the family (Allen et al, 2009).
Supporting those you love
The support that young adult carers provide can help to maintain the relationship with a parent (or other relative) with dementia. In research I carried out with young adult carers, Chris* - whose father had dementia which affected his speech - had sustained their father-son conversations by talking about his school life and hobbies: ‘I’d talk about the plays that I was being in, or the work I had at school, sort of more normal stuff to make the situation feel as normal as possible really’ (Boyle, 2020: page 7). Having a sense of humour when things do not go as planned, sharing stories, and singing with the person with dementia are important aspects of bringing joy to the day. The love that young people show to a parent or other relative with dementia also helps to maintain these relationships. In my research, Findlay, who helped cared for her father with dementia, emphasised: ‘Like I love him’.
The challenges and rewards
Supporting a parent or relative with dementia can have a negative impact on family life, friendships, education and couple relationships. Findlay (mentioned above) said: ‘people don’t realise how much being a young carer can actually affect romantic relationships because I used to date someone who got really annoyed that I’d start putting my dad first before him and wouldn’t understand that…if something happens, even if he’s just worried…I need to be at home’. It is important to be aware that whilst the caring role can pose challenges, it may also be enriching and enhance young people’s emotional and moral development (Boyle, 2020). The Carers Action Plan (England) emphasised that young carers need to be able to enjoy their adolescence and have opportunities to thrive (DHSC, 2018). Note, the Care Act 2014 states that each young carer should have a transition assessment, which includes giving consideration to whether to continue caring after the age of 18.
The following are great ways of making friends and having fun - do not feel you have to cope alone:
- This short musical video - created by young adult carers - highlights the importance of health professionals being aware of young carers and when they might need support: https://www.youtube.com/watch?v=ZzK6OY9mvBo&feature=youtu.be
- Young carers groups offer peer support, social activities and advice. Find out more from the Carers Trust website: https://carers.org/about-caring/about-young-carers
- The annual Young Carers Festival is organised by the Children’s Society: https://www.childrenssociety.org.uk/information/young-people/young-carers/festival
*Footnote: pseudonyms are used instead of research participants’ real names.
Allen, J., Oyebode, J. and Allen, J. (2009) Having a father with young onset dementia. The impact on well-being of young people. Dementia 8(4), 455–480.
Boyle, G. (2020) The moral resilience of young people who care (2020), Ethics and Social Welfare, 14 (3), pp. 266-281.
Burns, A. (2017) Tacking the challenges of young onset dementia. NHS England Blog. 6 April. https://www.england.nhs.uk/blog/tackling-the-challenges-of-young-onset-dementia/
Carers Trust (2020) About young adult carers https://carers.org/about-caring/about-young-adult-carers
Clay D., Connors, C., Day, N., Gkiza, M. and Aldrige, J. (2016) The lives of young carers in England. Qualitative report to Dept. for Education. London: DOE.
Dept of Health and Social Care (2018) Carers Action Plan 2018 - 2020 Supporting carers today. London: HMSO.
Kelly G, Devine, P and McKnight, M. (2017) Lost in translation? The challenges of measuring informal care among children and young people, International Journal of Care and Caring, 1 (3), pp. 389-407.
Social Care Institute for Excellence [SCIE] (2005) Research briefing 11: The health and well-being of young carers. www.scie.org.uk/publications/briefings/briefing11/index.asp#users