Overview
Unmet needs are concerns or problems for which individuals perceive that they require help. Identifying the unmet needs of consumers can assist in identifying the areas of care where improvements are most needed. This study aims to develop two comprehensive unmet needs surveys for people with dementia and their carers. Using these measures, we will explore the natural history of unmet needs and depression among people with dementia and their caregivers, and factors associated with higher unmet needs and greater levels of depression among people with dementia and their caregivers. This information may be used to drive changes in health policy and practice to improve the wellbeing of these individuals.
This involved was a cross-sectional survey of community-dwelling individuals living with dementia and carers providing support to people living with dementia. Participants were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting people with living with dementia completed the Unmet Needs Instrument for Dementia (UNI-D) and carers completed Unmet Needs Instrument for Carers (UNI-C). Items exploring sociodemographic characteristics, mental health and quality of life were also included.
Progress
Data collection is completed. Final psychometric analysis of the measures and reporting of change in unmet needs over time is underway.
Available Resources
The two measures were developed for clinical and research purposes. Please use these measures and provide appropriate acknowledgment in any publications or presentations. We are happy to grant you permission to translate the unmet needs instruments and request that you provide us with a copy of the translated measure once it is complete. (email: HBRC@newcastle.edu.au). Please contact us if you have any questions or concerns or would like to collaborate further.
Publications & Presentations
- Mansfield E, Cameron E, Carey M, et al. Prevalence and Type of Unmet Needs Experienced by People Living with Dementia. Journal of Alzheimer’s Disease 2022;87:833-42. doi: https://doi.org/10.3233/JAD-215183
- Mansfield E, Cameron EC, Boyes AW, et al. Prevalence and type of unmet needs experienced by carers of people living with dementia. Aging & Mental Health 2023;27(5):904-10. doi: https://doi.org/10.1080/13607863.2022.2053833
- Carey M, Mansfield E, Cameron E, et al. Depression and thoughts of self-harm and suicide among people living with dementia: results of a cross-sectional survey. Psychogeriatrics 2023;23(5):773-80. doi: https://doi.org/10.1111/psyg.12996
- White J, Falcioni D, Barker R, et al. Persisting gaps in dementia carer wellbeing and education: A qualitative exploration of dementia carer experiences. Journal of Clinical Nursing 2024 Nov;33(11):4455-4467. doi: https://doi.org/10.1111/jocn.17404
- White, J., Falcioni, D., Barker, R., Bajic-Smith, J., Krishnan, C., Mansfield, E., & Hullick, C. Understanding Dementia Carer Experiences Before Admission to a Residential Aged Care Facility: Implications for Integrated Care. Journal of Applied Gerontology, 2024;0(0). https://doi.org/10.1177/07334648241261454
- Mansfield E, Cameron E, Clapham M, Hall A, Boyes A. Psychometric evaluation of the unmet needs instrument for carers of people with dementia (UNI-C). J Patient Rep Outcomes. 2025 Mar 11;9(1):28. doi: https://doi.org/10.1186/s41687-025-00856-7
- Mansfield, E, Sanson-Fisher, R., Nair, B., Cameron, E., & Hall, A. Gathering and utilising consumer perceptions of the impact of dementia: The benefits of identifying unmet needs, Poster Presentation, Alzheimer’s Australia Biennial National Dementia Conference, 18-19th October 2017, Melbourne.
- E Cameron, E Mansfield, K Nair, M Carey, A Boyes. What do people with dementia and their carers need? Poster Presentation, 2024 AAG Conference, 11-15 November 2024, Hobart.