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An invitation for young adults who have cared, or are currently caring, for a parent with dementia

This project aims to gather the experiences of young adults who are caring for a parent with dementia. It is our hope that a resource can be developed for other young people using the responses, wisdom and knowledge gathered. This resource would be aimed at sharing the experiences of young people who have cared for a parent, but would also be a valuable resource to practitioners, service providers as well as family, friends and support people.

This project was initiated after a young adult who was arranging the administrative, financial and legal aspects of caring for their mum with early-onset dementia was talking with a friend (and narrative practitioner) about their experience navigating the processes required of a ‘carer’. They remarked about how they found it challenging to understand what was expected or needed of them, as they didn’t understand the system (whether medical, legal, or aged care) and as they’re in their early twenties, was finding it difficult to find age-appropriate services to provide information and support. As being a young person caring for a parent with dementia is somewhat uncommon, the support services for young carers available to them didn’t quite know what to offer them.

After some research, it was realised that ‘young carers’, which is generally carers who are over 18 but younger than 25 (although many are older than this), are very rarely the focus of carer support within aged care or dementia-related services. Very little information is available to represent the experiences of young people who are the sole or primary carers of a parent with dementia, and what is available often presumes the type of relationship the person has with the person their caring for, other family members, or their choice to care for their parent. We want to give the opportunity to other young people who are caring for a parent with dementia, to share their experiences, in the hopes of being able to illuminate this often-overlooked area.

Within this project, we would also like to acknowledge the complexity of relationships, power and family dynamics, cultural and societal expectations, race, class, gender and sexuality, and how these all impact the lives of young people who are in caring roles for parents with dementia. The identity of being a ‘carer’ is incredibly complex and personal, and this project aims to illuminate the varied experiences of people who are, or have been in this position.

We have compiled the below questions to gather the responses of young people who have cared, or are currently caring for a parent with dementia. We invite you to respond to any or all of the questions, and share your responses with us if you feel comfortable doing so. These questions can be responded to alone, or in partnership with family, friends or a support person/practitioner.

You do not need to call yourself a ‘carer’ to share your response. We welcome and encourage responses from young people who were tasked with caring for a parent with dementia and did not want to or were not able to continue in this role.