Prevalence and type of unmet needs experienced by carers of people living with dementia

Abstract

Objectives

Carers of people with dementia experience significant physical, emotional, and social burdens. Needs assessment can provide important information to assist services in providing support to carers to reduce these burdens. However, few studies have examined the prevalence of unmet needs experienced by carers of people with dementia using a quantitative instrument. This study aimed to examine the prevalence and type of unmet needs experienced by carers of people with dementia in Australia.

Methods

This was a cross-sectional survey of carers providing support to community-dwelling individuals living with dementia. Carers were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting carers completed a survey including an 80-item study-specific unmet needs instrument for carers (UNI-C) and sociodemographic characteristics. Descriptive statistics were used to identify the most prevalent unmet needs reported by carers.

Results

A total of 169 carers (response rate 47%) completed the survey. Most (87%) carers reported at least one unmet need. Carers reported a median of 16.0 (IQR = 24.0; max = 58) out of a possible 80 unmet needs. The most frequently endorsed unmet needs spanned a range of areas including emotional wellbeing, accessing health and aged care services, managing apathy, and finding information.

Conclusion

This study highlighted that a large proportion of carers experience unmet needs associated with caring for someone with dementia. Developing and rigorously testing interventions to meet carers’ commonly reported unmet needs are warranted.

Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2022.2053833 .

Keywords:

• Support person
• carer
• Alzheimer’s disease
• measurement
• unmet needs

Acknowledgements

The authors would like to thank the carers who gave their time to contribute to this study; William Browne and Elaine Todd for contributing to development of the unmet needs measure; Sandra Dowley for data management; and Matthew Clapham for statistical support.

Disclosure statement

The authors have no conflicts of interest to declare.

Ethics approval statement

The study was approved by the Human Research Ethics Committees of Hunter New England Health (17/05/17/4.07) and the University of Newcastle (H-2018-0308).

Data availability statement

The data that support the findings of this study are available from the corresponding author [EM], upon reasonable request.

Additional information

Funding

This work was supported by a National Health and Medical Research Council Dementia Research Team grant (APP1095078) and infrastructure funding from the Hunter Medical Research Institute. Allison Boyes is supported by a National Health and Medical Research Council Early Career Fellowship (APP1073317). Mariko Carey is supported by a National Health and Medical Research Council Boosting Dementia Leadership Fellowship (APP1136168).