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Constraints and ethical tensions in the area of young-onset dementia

28 November 2019
Professional
02 November 2019
Volume 28 · Issue 21

Abstract

Background:

young-onset dementia (under age 65) varies in many respects to typical aged dementia. Health professionals are centrally involved in supporting individuals and families to cope with the unique challenges that young-onset dementia (YOD) brings.

Aims:

this study aimed to explore professionals' perceptions of the key challenges faced by people living with YOD and their families, and how they provide support to this group.

Methods:

qualitative interviews were conducted with nine health professionals from a range of health and social care contexts. Data were analysed using interpretative phenomenological analysis.

Findings:

interviewees reported significant challenges in trying to enact support for people with YOD, and families. Particular challenges relate to delays in accessing timely diagnosis, and difficulty in accessing relevant, age-appropriate supports. Interviewees experienced ethical tensions working in this area; interviewees were keen to enact support for the person following diagnosis, but felt constrained by service options that were not relevant or readily accessible to the person, and in some instances, traditional dementia services added to, rather than lessened the stress experienced by those involved.

Conclusion:

dementia and health services should be cognisant of the unique challenges of YOD, and models of service provision should aim to respond accordingly. Nurses and other health professionals should be afforded the necessary structures to support people living with YOD. This relates to dedicated YOD models of care, specifically timely diagnosis, post-diagnosis support and community services that enhance personhood and resilience.

People living with young-onset dementia (YOD) face unique challenges and may experience dramatic changes to social status, identity, and family roles (Kitwood, 1997; Rossor et al, 2010; Smeybe and Kirkevold, 2013). YOD often manifests when people are in their 40s and 50s, meaning most will be in active employment and meeting familial and financial obligations (Sikes and Hall, 2018). YOD often has more atypical features (Snowden at al, 2011). There is a wider range of early dementia symptoms and differential diagnosis (Draper et al, 2016). Early changes—for example, non-amnestic changes, or changes in mood (Draper et al, 2016)—mean that timely diagnosis of YOD is a challenge (Tellechea et al, 2018).

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Dementia
Patient support
Qualitative research
Person-centred care
Models of care