Unmet needs of people with dementia and their carers

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.

Publications & Presentations

1. 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: 10.3233/JAD-215183
2. 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: 10.1080/13607863.2022.2053833
3. 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
4. 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.

Co-leaders: Prof Kichu Nair, Dr Elise Mansfield, Prof Cate D’Este.

Working Group Members: Elaine Todd (consumer), Dr William Browne, A/Prof Mariko Carey, Dr Alix Hall and Dr Allison Boyes.