Abstract
ABSTRACT
Introduction
Young‐onset dementia (YOD) is a term used when people demonstrate symptoms or are diagnosed with dementia before 65 years of age. YOD can be challenging to diagnose because health practitioners often do not initially consider dementia as the cause of someone's change in health or function in their 40 s, 50 s or even early 60 s. This can be the start of a complex journey for both the person living with YOD and their care partner. The aim of this study was to explore the journey for two care partners whose spouses were diagnosed with YOD.
Methods
Co‐operative, narrative inquiry, which is a collaborative, participatory research approach was used. This enabled in‐depth reporting of the experiences of the two care partners, who were also research partners and authors on this project.
Results
The story is told through a timeline lens where both care partners' narratives described their journeys prior to diagnosis, diagnosis, life after diagnosis through to transitioning to a care home. Both care partners experienced long periods of uncertainty as initial changes became evident, followed by frustration with health professionals leading to delays in onward referral and diagnosis. Both found the change of role to be confronting and their care for their spouse with YOD to significantly impact on their finances, work, social lives and wellbeing. Both worked hard to maintain their spouses' dignity and quality of life. They became innovative problem‐solvers and strong advocates. Both continue in advocacy roles at the local, state and national levels.
Conclusion
Giving space to reflect on the stories of family care partners of people living with YOD is helpful in sensitising health professionals to the needs of their clients over time and highlighting the integral role of families in managing the condition.
Patient or Public Contribution
Two lived‐experience contributors, both care partners of people living (or having lived) with young onset dementia, were involved as research partners throughout the project. They reviewed and edited the ethics application (including project proposal) to ensure the proposed research and participant materials were acceptable and understandable to care partners. They each participated in an individual interview (after providing written consent as required by the local Human Research Ethics Committee), shared their lived experience to help interpret and contextualise the findings, and provided detailed feedback on drafts of the manuscript. They also contributed additional information to strengthen the implications for practice and have been included as named authors on the paper in recognition of their substantial contribution and partnership in the project.