Dementia is a major challenge to the nation’s health. With an ageing population, dementia prevalence is increasing, and with it, the number of unpaid carers. As young adults are increasingly living at home with their parents, the number of young adults caring for parents with dementia is expected to increase too.
There are also 40,000 people with young onset dementia, many of whom will have children living with or near them.
But what is known about children and young people under the age of 25 who provide regular and ongoing care and emotional support for a person living with dementia? Public Health England asked us to look into what is known about this group of young carers.
Worryingly, we don’t know exactly how many young people are caring for adults with dementia. There is also only limited evidence about how caring for someone with dementia impacts on children and young people, and how the needs of these young carers can best be met.
Young people caring for adults with dementia represent a small proportion of both dementia carer and young carer populations. Many do not access professional support despite being legally entitled to it. In common with many children and young people supporting individuals with other conditions, some do not identify as 'young carers' at all, so may not use young carers' services.
Dementia services also struggle to meet the needs of young people and their families. Given that the average age of unpaid family carers is 60-65, and that people with young onset dementia represent only 5-9% of all people with dementia in the UK – the focus is very much on helping older people. No practice guidance for professionals supporting these children and young people was identified in our research, nor were any tailored services or formalised networks for individuals aged under 18 supporting adults with dementia.
In addition to the challenges affecting young carers generally, young people caring for adults with dementia also have to deal with sudden mood and behaviour changes in the person they are caring for, loss of support and care from a parent with young onset dementia, and considerable strain on relationships with the person with dementia and other family members.
Young people respond to these situations in different ways. They may grieve for the person with dementia as they used to be, suppress their own needs for fear of burdening other family members, or engage in self-destructive behaviours. Whilst there can be positive aspects to young people caring for others, research shows that young carers often experience worse outcomes than their peers in terms of health, wellbeing, education and income.
Given the strain faced by young people caring for adults with dementia, statutory bodies and organisations should use and create opportunities to raise awareness about this group. Tailored information should be provided to children and young people providing care and support, and existing services should become more sensitive to the needs of families in which young people are supporting adults with dementia. Young people also need support to connect with others who share some of their experiences.
The hidden numbers of young people caring for adults with dementia deserve to get the support they need so their own lives and relationships aren’t undermined by the responsibilities they shoulder.