A race against time: couples’ lived diagnostic journeys to young-onset dementia

Abstract

Purpose

Young onset dementias (YOD) – typically defined by symptom onset before age 65 – are frequently overlooked in medical and community settings. Persons with YOD and their spouses face logistical and emotional challenges on their journey to a diagnosis (e.g. uncertainty about symptoms, lack of medical knowledge, emotional distress). An in-depth understanding of couples’ experiences before and immediately following a YOD diagnosis is warranted to inform early psychosocial services for couples.

Methods

We utilized dyadic qualitative semi-structured interviews (N = 23) to better understand the nuances of couples’ pre-diagnostic and diagnostic experiences with YOD. We used a hybrid of deductive and inductive analytic strategies to identify couple-level themes.

Results

Fifteen couple-level themes were extracted within four domains: (1) early indicators of symptoms, (2) obtaining a diagnosis, (3) experiences with health care providers, and (4) emotional reactions to the diagnosis. Couples expressed difficulties communicating about early symptoms, receiving accurate and timely diagnostic information, and managing multiple emotions. They described the value of working together to manage care, gain information, establish positive relationships with providers, and promote adjustment.

Conclusion

Findings highlight the shared experiences of couples during the early stages of YOD, including the importance of strong communication with each other and providers. Early and accessible psychosocial services that help couples cope with and communicate about individual and shared stressors are warranted.

Keywords:

• Young onset dementia (YOD)
• couples
• dyadic interviews
• persons with dementia
• spouses

Acknowledgements

We also want to extend our sincere gratitude to the multidisciplinary team at the Massachusetts General Hospital Frontotemporal Disorders Unit, including Bonnie Wong, PhD, Katie Brandt, Megan Quimby, MS, CCC-SLP, and Erin Krahn, for their valuable feedback on the interview script and recruitment of couples living with YOD.

Disclosure statement

We declare no conflicts of interest.

Additional information

Funding

This work was supported by National Institute of Nursing Research (NNIR) under 5R21 grant (NR017979); National Institute on Aging (NIA) under 3R21 supplement grant (NR01797902-S1).