With the number of young
people caring for an adult with dementia expected to rise, Emily Hamblin looks
at what we know about them, and their experiences and needs.
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.
Read NCB's report Young
people caring for adults with dementia in England.
Emily Hamblin is Senior Development Officer at the
National Children's Bureau.