The emotional journey of the young people having a parent with younger onset dementia — The Association Specialists
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The emotional journey of the young people having a parent with younger onset dementia (340)

Karen Hutchinson 1 , Chris Roberts 1 , Susan Kurrle 2 3
  1. Northern Clinical School, University of Sydney, Hornsby, NSW, Australia
  2. Division of Rehabilitation and Aged Care, Hornsby Ku-ring-gai Hospital, Hornsby , NSW, Australia
  3. NHMRC Partnership Centre on Cognitive Decline, University of Sydney, Hornsby, NSW, Australia

Background:

A recent report "Dementia in Australia 2012"1 estimated 23 900 people living in Australia with younger onset dementia (YOD), under 65 years, which is 6-9 % of all dementia cases. From the little body of research that privileges the experiences of the young people with a parent with YOD varying degrees of emotional trauma has been highlighted.234

Aims:

To develop a greater understanding on the emotional impact on young people aged between 10-24 years, with a parent with YOD and society’s influence on the emotional trauma experienced.

Methods:

Through this qualitative research study, conducting semi- structured interviews with young people we develop a clearer picture. Using the theoretical lens of the social model of disability5 to interpret the data we acknowledge that these particular young people are also disabled by society.

Results:

We identified four main themes that impacted on the young people’s emotional journey: emotional toll of caring, family breakdown, grief and loss and mental health issues. The emotional trauma experienced by these young people often proved to be socially constructed due to societies failure to adequately support these young carers’ emotional wellbeing and reduce their burden of care.

Particular vulnerable times were noted where young carers move from youth to adulthood.  For some this resulted in medically diagnosed mental health issues.

Many witness the disintegration of their parent without adequate support of their own emotional needs often feeling isolated and lost in the chaos.

Conclusion:

This study confirms the findings of others but adds another dimension by using the social model of disability suggesting that society adds to their emotional trauma through exclusion and discrimination.

It is important that further research is undertaken to add to theory and the practise in developing adequate age appropriate and family support services.

  1. Australian Institute of Health and Welfare 2012. Dementia in Australia. Cat. no. AGE 70. Canberra: AIHW.
  2. Svanberg E, Spector A, Stott J. The impact of young onset dementia on the family : a literature review. International Psychogeriatrics. 2011;23(3):358 -71.
  3. Gelman C, Greer C. Young children in early onset alzheimer's disease familiies: research gaps and emerging services needs. American Journal of Alzheimers Disease and Other Dementias. 2011;26(1):29-35.
  4. Allen J, Oyebode J, Allen J. Having a father with young onset dementia - the impact on well being of young people. Dementia. 2009;8(4):455-80.
  5. Barnes C, Mercer G. Exploring Disability. second ed: Polity Press; 2011. 1-341