Functional difficulties, receipt of help, and unmet needs among people with newly diagnosed dementia: Results from the DETERMIND project

BackgroundNewly diagnosed people with dementia and Alzheimer's disease may have varying levels of functional difficulties in which help is required. Little is known about how their needs are met, the associations of needs with care dyad background characteristics and how these characteristics are associated with each other.ObjectiveWe investigated the pathways between background characteristics, functional difficulties (need) and receipt of help.MethodsThe sample included 672 newly diagnosed people with dementia and their carers. Four activities of daily living (ADLs), three instrumental activities of daily living (IADLs) and receipt of help in these activities were used to define needs and unmet needs. Receipt of adequate support from health and social care services was also reported. Regression and path models explored the associations with background characteristics.ResultsMost people with dementia had at least one ADL (42%) or IADL (83%) difficulty. Among those who had a difficulty, 50% and 31% had at least one unmet ADL or IADL need, respectively. Support from health and social care services was reported as inadequate by 29%. Many background characteristics (age, gender, education, homeownership, urban-rural location, area deprivation) were associated with receipt of help through functional limitations and/or whether the carer was spouse or coresident.ConclusionsAlthough people newly diagnosed with dementia had fewer ADL than IADL difficulties, unmet need was proportionally higher for ADLs than IADLs. The findings point to possible barriers to receiving help shaped by complex pathways through sociodemographic factors, current levels of functioning and carer characteristics.