This Voice, Inclusion and Participation research group seminar is led by Professor Pat Sikes from the University of Sheffield.
‘I thought I was the only person to have cancer envy’: researching and re-presenting the perceptions and experiences of children and young people who have a parent with dementia.
It’s hard to avoid the knowledge that increasing life expectancy throughout much of the world means that dementia poses major global public health and social care challenges. But are you also aware that advances in medical knowledge and improved diagnostic procedures have led to more people under 65 being diagnosed with variants of the disease?
A rough estimation is that, in 2017, around 43,000 people in the UK are known to be living with young onset dementias. Many of these people will be the parents of children, adolescents and young adults. Whilst the vast majority of research on dementia has focused on those over 65 and their relatives and carers, the limited evidence available suggests that parental dementia in families with children and young people causes greater ongoing social and psychological upset, ill health, damage, tension, hardship and family break up than it does where children are adults.
Using narrative, auto/biographical approaches and with a view to developing supportive services and resources, an Alzheimer’s Society funded project has uniquely sought to explore what it’s like to be a child or young person whose parent has a young onset dementia. Over two years, 22, 6–30 year olds told stories of living with dementia which are largely missing from the research literature.
In this presentation, Professor Pat Sikes will tell stories from the project that, as well as reporting perceptions and experiences, will also deal with, inter alia, the origins and design of the study and how participants came to be involved; the ethical implications and consequences of undertaking sensitive and personal research which challenges socially dominant discourses and narratives of dementia; and the aftermath of media coverage.
Please be aware that, as dementia is a terminal and inevitably progressively debilitating disease, some of the stories are distressing. Also, as the aim of the project was to re-present what the young people had to say, some of their accounts are couched in frank language.
This free seminar is open to all - please register your place via the above link.