Supporting behaviour change in younger-onset dementia: mapping the needs of family carers in the community

Abstract

Objectives

Almost 10% of people with dementia experience a younger-onset of disease (before 65 years). Changes in behaviour are common, as are delays in diagnosis and limited access to appropriate support and services. This study aimed to explore the specific behaviour support needs of families living with younger-onset dementia.

Methods

Seventy-one families of people with younger-onset dementia were surveyed to understand the experience of family carers regarding difficult-to-manage behaviour changes, confidence in identifying and implementing behaviour support strategies, use of specific behaviour support strategies, and use of formal and informal support services regarding behaviour changes.

Results

Survey responses were received from family members of people living with behavioural variant frontotemporal dementia (n = 28), semantic dementia (n = 17), and Alzheimer’s disease (n = 23). Over 90% of family carers reported difficult-to-manage behaviours which fell into four main domains: (1) aggression, (2) compulsive behaviour, (3) disinhibition and inappropriate social behaviour, and (4) apathy. A range of preventative and responsive strategies, with an emphasis on de-escalation strategies were identified and carers reported variable confidence in managing behaviour changes or in accessing formal support strategies.

Conclusions

Difficult-to-manage behaviour changes in community-dwelling people with younger-onset dementia are common. The existing agency of families should be recognised and built upon with better access to specific behaviour support services to increase competence and confidence in providing behaviour support and ultimately improve quality of life for them and their family member with dementia.

Keywords:

• Behaviour changes
• behaviour support
• younger-onset dementia
• frontotemporal dementia
• Alzheimer’s disease
• informal carers
• family carers

Acknowledgements

The authors would like to thank all the families living with dementia who participated in this study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was funded in part by a seeding grant from the Charles Perkins Centre Active Ageing Research Node, The University of Sydney and by funding to Forefront, a collaborative research group dedicated to the study of frontotemporal dementia and motor neurone disease, from the National Health and Medical Research Council of Australia (NHMRC) program grant (GNT1037746). OP is an NHMRC Senior Research Fellow (GNT1103258).