This Thursday, 30th January, is Young Carers Awareness Day. Led by the charity Carers Trust, Young Carers Awareness Day is an annual event that aims to highlight the challenges faced by young carers and to campaign for young carers to receive greater recognition and more support. 

Recent research shows that as many as one in five secondary school children may be a young carer. Carers of all ages experience ill-health, stress and exhaustion: how much more difficult it is for a young person or child, trying combine family caring responsibilities with the demands of their education and their life transition into adulthood. Being closely involved in caring for a family member, shouldering a share of the emotional and physical load, can be isolating and bewildering for a young person, and have a negative impact on their educational outcomes, aspirations and life chances.

Dementia is a condition associated with older age, therefore most younger people who experience dementia in their families will do so because a grandparent or great aunt or uncle develops the condition. Often younger family members in this situation will witness stress and tension in the family, but feel unable to make any helpful contribution. The young person might be in earshot of discussions between adults; they may hear about the difficulties associated with the person’s dementia, his/her memory loss, behaviour problems, progressive inability to cope with everyday life; they may hear that it isn’t safe for the person to live in their own home anymore. The young person may become acutely aware of the impact that caring is having on the main family carer, their mother or father, or both. They may be aware of family disputes and disagreements about what’s to be done for the best. They are involved, but not included, and this can feel very isolating and disempowering. 

For people diagnosed with young onset dementia – defined as people under the 65 – the effect on their children can be very significant indeed. Currently there are around 42,000 people under the age of 65 living with dementia in the UK. This includes people in the 40s and 50s, as well as (very rarely) people who are even younger. 

The life-changing consequences of dementia diagnosis at a young age are immense. The years lost to dementia are far greater, both for the person with the condition and for their spouse/partner (if they have one) who usually becomes the primary carer. The financial implications of retiring from work early, changes to relationships with friends and family members, feelings of embarrassment, withdrawal from social groups - these are big adjustments people are faced with in the months and years after diagnosis. The knock-on effect on family life cannot be over-stated. 

The impact for a child, teenager or young adult who has a parent living with dementia cuts deep. Caring for a parent entails dealing with unfamiliar and uncomfortable aspects of life. There is a progressive sense of loss and anticipatory grief, shared anger and sadness. Everyone copes differently and no person with dementia is the same: but incontrovertibly, receiving a diagnosis at a young age turns everyone’s life upside down. Nothing, anymore, is certain or predictable. Relationships change, and then change again, and again. 

An Australian study researching the impact of living with a parent with young onset dementia for child carers (Hutchinson, Roberts & Kurrle 2014) reported that society and the services failed to support the emotional needs of young people in this situation and their ability to access the social, educational and economic opportunities relevant to their age was adversely affected. This caused feelings of isolation and created barriers to full participation in society. The diagnosis of dementia created social stigma, discrimination and lack of understanding. This exacerbated the challenges faced by the young people interviewed in the study, and compounded the difficulties experienced by their families.

So, Young Carers Awareness Day is an extremely important initiative and one that organisations in the dementia field should fully embrace. Carers Trust, through their Count Me In! campaign, is calling for all education providers to do more to proactively identify young carers and ensure that they receive the recognition and support they deserve.

Live Better With is supporting Young Carers Awareness Day. We are keen to enlist your engagement with the Count Me In campaign. We believe that young carers involved in providing support for family members with dementia – especially those with a parent with dementia – deserve support, understanding and recognition for their valuable contribution to informal care. 

Please contact me if you have a story to share: barbara@livebetterwith.com