Young Carers, their rights and their voices

On Young Carer Awareness Day Beau Nieuwenhuijs, Carers Engagement Lead at tide, explores the experience of young carers from a rights based approach.


Today is Young Carer Awareness Day. For us at tideit is a day to think about two specific topics: why we should focus our efforts on young carers of people with dementia; and how we are going to do this. We’ve got the ‘why’ figured out, but for the ‘how’ we will need your help.

A Rights Based Approach


At TIDE human rights are at the foundation of what we do. Carers have the same human rights as people who don’t provide care for a loved one. However, sometimes these rights are being infringed upon by the social care system, or there’s a simple complacency of human rights. We are not there yet, and this becomes especially clear when looking at young carers, their rights under the UN convention on the rights of the child and how much these baselines are, or are not, being met

Article 5: the right to be given guidance by your parents and family

According to the children and young people’s commission in Scotland this article says that parents and guardians of children and young people should act in the best interest of the child. It recognises the importance of the family to provide guidance and advice and that it’s integral to a young person’s wellbeing. Sometimes this is compromised when a parent gets dementia, through no fault of anyone involved. From interviews with young carers in this situation we know that oftentimes the relationship changes when a parent gets a dementia diagnosis. One young person describes:


“it feels like I’m a grown up, and my dad’s my kid but, he’s not”


Because of the nature of the illness young people will have to cope not only with the practical aspects of caring, but also with the difficult “ambiguous loss” that is commonly associated with dementia. You’re grieving for the person you knew whilst they are still there, and have to accept the changes in your identity in relation to them. Dr Feylyn Lewis describes that this can be particularly challenging for young people since they are still developing their identity in the first place.

On top of that, the young person might also want to protect their other parent, who doesn’t have dementia, from the problems they’re going through themselves. Or the other parent doesn’t have enough time on their hands. This means the young person does not always get the support and guidance from their family that they might need. Some young person said this about their experience:


“there was lots of different things that I didn’t, didn’t want to burden mum with, that I’d bottle up”


“we just felt thrust out of our childhood”


Article 28 and 29: the right to education, and to achieve the goals of education

These articles state that children have the right to an education, and that this education should strive to develop the child’s personality, talents and abilities. Sometimes, when a young person looks after someone with dementia, they feel they have to make sacrifices. They will have increased absences from school; they can’t concentrate as well and have lower educational attainment. A study amongst young carers in Glasgow showed that once young carers are considering higher education, they will often choose what to study based on the location of the college or university and the flexibility of the degree rather than on how that fits with their goals and aspirations. They feel they have to fit their education around their caring responsibilities. What not everyone knows however, is that many colleges and universities have a policy in place to support carers in their studies.

Article 15 and 31: freedom of association and the right to leisure, play and culture

Both these articles refer to the right young people have to make friends, be around other people their age, relax and enjoy leisurely activities. Having caring responsibilities can sometimes prevent young people from doing this. This could be either because they don’t have time or because they don’t want to upset others. One young carer of a parent with dementia said:


“We never used to let anyone come here because we didn’t want to upset anyone else, so we thought it would just be best if we were to cope.”


This illustrates how difficult it can be for a young carer to combine their caring responsibilities with being like their peers and having time to just be a young person. Although luckily, this study also described that these young people often relied on their friends for emotional support.

Many families still struggle to get enough and good quality support in place for the person with dementia. When this is not available, the other family members including the young person have to step in and provide this care.

What next?

These statements in relation to the rights of young people don’t always paint a pretty picture. Yet many young carers could see advantages in their caring roles as well. They’ve picked up important and relevant skills and feel it has made them a better person. However we don’t hear the stories and experiences of young carers enough. At tide we want to have young people looking after someone with a diagnosis of dementia at the heart of what we do. We want to invest in them, help them to develop to their full potential and empower them to share their stories. To do that we need to take a co-production approach and work in partnership with other organisations supporting young carers. But even more so we need to work in the partnership with young people themselves. For this we need your help, do you know someone between the ages of 11 and 30 who has caring responsibilities for someone with dementia? Do they want to raise awareness about what it’s like to be young and affected by dementia? If so, please get in touch. We are together in dementia everyday and we can work with you to help every young person develops to their full potential.

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