The psychological impact of having a parent with a progressive neurodegenerative condition

Electronic versions


  • Helen Aslett

    Research areas

  • DClinPsy, School of Psychology


This thesis examined the experiences of having a parent with a progressive neurodegenerative condition. An integrative literature review was conducted to assess the experiences of growing up in a family affected by Huntington’s Disease (HD), and a qualitative research study was undertaken to examine the experiences of young adults living with a parent with young-onset dementia (YOD), dementia diagnosed before the age of 65. Five young adults, between 25-36 years of age, participated in the study and semi-structured interviews were analysed using Interpretative Phenomenological Analysis (IPA). The integrative literature review found that young people growing up in families affected by HD experienced uncertainty, isolation, and unique challenges transitioning to adulthood as they balanced caregiving demands with their own potential risk of developing HD. Levels of family disruption and the age of the child at the time of the parental HD diagnosis were also related to later psychological outcomes. Findings from the research study indicated that young adults with a parent with YOD experienced feelings of loss and guilt as they managed relationship changes with their parent, role shifts, and caregiving responsibilities. Concern for their non-affected parent was also apparent. Participants reported experiencing isolation from others due to lack of shared experience. The need to feel understood by both peers and health care professionals, was clear. The integrative literature review and empirical study both suggest that individuals with parents with HD or YOD have significant needs and face considerable challenges. In both circumstances it is important that health care professionals are aware of these needs, offer appropriate support and develop timely interventions to manage feelings of distress and isolation. Clinical and research implications are discussed.


Original languageEnglish
Awarding Institution
Award date12 Jun 2014