Looking to the future
At this point in the research project we have analysed the data from the perspective of emotional trauma. The more we listened, the more we realised that these young people had experienced significant difficulty due to the consistent lack of support and understanding by their communities. While we were not surprised by their deteriorating health (Cass et al 2011), the severity of that deterioration and the degree to which they were stigmatised by their own families and local communities was surprising.
Equally challenging was the way that fragmented service provision consistently let them down. These young people were living with their own grief and trauma as well as struggling to support their parent’s mental health, but society seemed to be making things worse for them.
In order to further understand the experiences of the young people we interviewed and to be able to formulate a framework within which to develop further research and recommendations for support and service delivery, we looked at our research participants from the perspective of the Social Model of Disability. This model helps us understand the experiences and truth of disability as a social problem rather than an individual or family issue. It draws our attention to the real problems of disability, the attitudes which disadvantage people and the social barriers that affect full participation in society (Barnes & Mercer 2011).
From this perspective, these young people were at a greater disadvantage because society failed to support their emotional well-being and engagement in the social, educational and economic opportunities relevant to their age. This caused them unnecessary isolation and exclusion from fully participating in society. The diagnosis of dementia created social stigma, discrimination and lack of understanding. Because that stigma is common in the community, this only added to their family’s difficulties. We began to ask whether young people living with a parent with younger onset dementia – in experiencing similar discrimination by society as their parent – are therefore, in effect, disabled themselves.
As a wider community we need to ask questions like this and have these conversations so we can understand what social factors impact on the lives of these families and young people. We can see this personal tragedy of social discrimination and exclusion happening not only to the person with dementia, but also to their families and dependants. We need to understand that changes must be made to prevent social isolation and to promote emotional and physical well-being by providing adequate and age-appropriate support, thus avoiding the ‘derailment’ of the entire family at times of crisis.
A common issue revealed in our research was that young people found that service providers were so overwhelmed by the young person’s situation that they inadvertently contributed to their despair and were unable to help them move forward. This indicates that professionals need more training to be able to support younger carers and children of people with dementia. Almost all services are focused on aged care and the common situations of counselling partners and adult children or relatives. Dealing with young people in the context of a family affected by dementia requires specialist knowledge and expertise to provide effective intervention and support that meets their needs: empathy, services and practical advice.
Supporting young people
With the new Australian Government funded key worker roles for people with younger onset dementia and their families (Alzheimer’s Australia 2013) there are opportunities to help prevent some of the consequences of long-term emotional trauma in these young people. Paying particular attention around the vulnerable time when young people move from youth to adulthood is important.
Service providers and health practitioners can develop positive action towards monitoring the situation to prevent a crisis. As soon as a formal diagnosis of dementia is made, programs and support need to be put in place to reduce the caring responsibilities of these young people, as well as to control the amount and intensity of their caring roles. The provision of immediate support is important as issues have often existed for a long time prior to diagnosis.
For some young people over 18 years of age, the Alzheimer’s Australia (NSW) young people support group has provided an opportunity for them to meet others in similar situations and share experiences. A feeling of belonging is important for these young people to give hope for the future. Alzheimer’s Australia (NSW) runs the young people’s support group every second month at the Sydney Dementia and Memory Community Centre in North Ryde.
We must support the development of more services like this and help to make the children and teenagers affected by the need to care for a parent with dementia more visible to service providers, health practitioners and the community. With this aim, we are planning a workshop this year with relevant organisations to look at the issues and highlight opportunities for working together.
By doing this we may identify better ways of meeting the needs of these young people. In the meantime, we are still planning to recruit a few more participants in the 10-18 year age group for our research and run a focus group with some of the young carers who participated, to learn more about their experiences. We are continuing with the data analysis and further analysis of the emergent themes from the data is ongoing.
Karen Hutchinson is a Research Fellow at the Sydney Medical School, University of Sydney. Professor Susan Kurrle is Director of the National Health and Medical Research Council Partnership Centre on Cognitive Decline. Chris Roberts is an Associate Professor in Primary Care and Medical Education at Sydney Medical School – Northern. For questions and more information on this project, contact Karen at: email@example.com
For more information on the young people’s support group, call
(02) 9805 0100 or go to:
* Names have been changed to protect privacy
Alzheimer’s Australia (2013) National Younger Onset Dementia Key Worker Program: Available at: http://www.fightdementia.org.au/services/younger-onset-dementia-key-worker-program.aspx.
Barnes C, Mercer G (2011) Exploring Disability (2nd ed). Malden, MA: Polity Press.
Cass B, Brennan D, Thomson C, Hill T, Purcal C, Hamilton M, Adamson E (2011) Young carers: social policy impacts of the caring responsibilities of children and young adults. Report by Social Policy Research Centre, University of NSW (LP07755940).
Svanberg E, Spector A, Stott J (2011) The impact of young onset dementia on the family: a literature review. International Psychogeriatrics 23(3) 358-71.