Prevalence and Type of Unmet Needs Experienced by People Living with Dementia

Article type: Research Article

Authors: Mansfield, Elise^{a; b; c; *} | Cameron, Emilie^{a; b; c} | Carey, Mariko^{b; c} | Boyes, Allison^{a; b; c} | Nair, Balakrishnan^{d; e} | Hall, Alix^f | Sanson-Fisher, Rob^{a; b; c}

Affiliations: [a] Health Behaviour Research Collaborative, School of Medicine and Public Health, College of Health, Medicine and Wellbeing, University of Newcastle, Callaghan, NSW, Australia | [b] Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, NSW, Australia | [c] Hunter Medical Research Institute, New Lambton Heights, NSW, Australia | [d] John Hunter Hospital, Hunter New England Local Health District, New Lambton Heights, NSW, Australia | [e] Medical Education and Professional Development, School of Medicine and Public Health, College of Health and Wellbeing, University of Newcastle, Callaghan, NSW, Australia | [f] Hunter New England Population Health, Hunter New England Local Health District, Wallsend, NSW, Australia

Correspondence: [*] Correspondence to: Dr. Elise Mansfield, Health Behaviour Research Collaborative, School of Medicine and Public Health, The University of Newcastle, Callaghan, New South Wales, Australia. Tel.: +61 2 4042 0705; E-mail: Elise.Mansfield@newcastle.edu.au.

Abstract: Background:Accurately identifying the unmet needs of community-dwelling people with dementia allows targeted support to be provided to assist these individuals to stay at home. Objective:We developed a self-report instrument to identify the unmet needs of community-dwelling people with dementia and used this to explore the prevalence and type of unmet needs present in this population. Methods:This was a cross-sectional survey of people with dementia living in the community in Australia. Participants were recruited from geriatric clinics, respite centers, aged care providers, and carers attending support groups. Eligible people with dementia were provided with a study information pack and survey which included the self-report Unmet Needs Instrument for Dementia (UNI-D), sociodemographic characteristics and survey acceptability. Results:The UNI-D contained 26 items across 5 domains and demonstrated acceptable internal consistency, face and construct validity, and acceptability. Ninety-five eligible participants completed the survey (response rate 35%) with 85% identifying at least one unmet need (median = 4; IQR = 1–9). The items most frequently endorsed included needing more help with remembering things (64%), finding possible treatments for dementia (44%), understanding who to contact regarding a problem or concern related to dementia (36%), and to see friends and family more often (33%). Conclusion:The UNI-D is a promising tool to identify the self-reported needs of people with dementia. The development and rigorous testing of interventions targeting unmet needs related to health and wellbeing, dementia support, and meaningful activities appears warranted.

Keywords: Alzheimer’s disease, dementia, measurement, unmet needs, validity

DOI: 10.3233/JAD-215183

Journal: Journal of Alzheimer's Disease, vol. 87, no. 2, pp. 833-842, 2022