Monica Cations|Adrienne Withall|Ruth Horsfall|Nicole Denham|Fiona A. White|Julian N. Trollor|Clement T. Loy|Henry Brodaty|Perminder S. Sachdev|Peter Gonski|Apo Demirkol|Robert G. Cumming|Brian Draper
Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study
UNSW Sydney|Dementia Collaborative Research Centres|UNSW Sydney|UNSW Sydney|Dementia Collaborative Research Centres|Dementia Collaborative Research Centres|UNSW Sydney|University of Sydney|Dementia Collaborative Research Centres|Prince of Wales Hospital|Dementia Collaborative Research Centres|Prince of Wales Hospital|UNSW Sydney|Sutherland Hospital|South Eastern Sydney Local Health District|UNSW Sydney|South Eastern Sydney Local Health District|University of Sydney|Dementia Collaborative Research Centres|Prince of Wales Hospital
despite reporting high levels burden supporters people young onset dementia yod underuse formal community services previous quantitative studies yod limited utility guiding service design consider important contextual barriers service use aim study identify relevant barriers describe service features considered important improving uptake people yod supporterseightysix people consensusconfirmed yod mean onset age 553 years andor primary supporter participated quantitative interviews 50 also participated one seven qualitative focus groups interview participants reported levels community service use reasons nonuse functional impairment behavioural psychological symptoms supporter burden social network informal care provision focus group participants expanded reasons nonuse aspects ideal servicealthough least one community service recommended participants 968 667 chose use one clinical demographic factors included related service use qualitative analyses identified lack perceived need availability yodspecific barriers including ineligibility unaffordability lack security lack childcare commonly reported five aspects ideal service noted unique flexibile affordable tailored promoting meaningful engagementpeople yod families report formal community services meet personal psychological needs researchers provide ongoing assessment program feasibility suitability generalisability