Professor Pat Sikes
University of Sheffield
The Perceptions and Experiences of Children and Young People with a Parent with Dementia
The aim of the proposed study is to address a significant gap in the research and literature around living with dementia by investigating and re-presenting the perceptions and lived experiences of the growing group of children and young people (under 25) who have a parent with dementia, with especial reference to the impact on their educational/schooling experiences. The study would employ life history methodology to collect in-depth and substantial accounts from up to 20 young people, which would then be analysed using a grounded theory approach. This methodology is particularly suited to giving voice to silenced and hidden lives and can yield extremely rich data that other approaches are less successful at tapping. Expected outcomes are supportive and informative resources based in the data, available via a project website, a Facebook page and accessed through links on support group sites, for children and young people who have a parent with dementia and also for those who, in various ways, have professional contact with them. In addition articles for practitioner and general interest publications will be written to further awareness of the experiences and needs of these young people. An end of project conference/workshop will be held aimed at people working in the field of early onset dementia and also for school and university counselling and psychological services. The research will also yield traditional academic papers and conference presentations dealing with and contributing to the development of theoretical, methodological and ethical, as well as substantive, issues.