A Longitudinal Study of Functional Unmet Need among People with Dementia

Background: Understanding the changes of unmet need in dementia may enable effective targeting of help and allow people to stay in their homes longer. Objective: We investigated changes in unmet need and functioning over a 4-year period and the role of socio-demographic factors in these changes among people with dementia. Methods: 234 community-dwelling people with dementia at baseline were studied in three consecutive waves (four years) of the English Longitudinal Study of Ageing (ELSA). Unmet needs (self/informant-reported limitations for which no help was received) and functional limitations (self/informant-reported difficulties in activities/instrumental activities of daily living and mobility) were modelled with latent growth curves. Sex, age, partnership, and socioeconomic status at baseline were used as predictors. Admission to a care home was an additional outcome. Results: Unmet needs increased over time, especially among those who initially had more functional limitations. Unmet needs contributed to faster decline in functional capability, except among those with many limitations initially the major driver of increased unmet needs was not having a partner (direct effect). Age, sex, and wealth contributed indirectly via the initial level of functional limitations and/or unmet need. Those with several functional limitations but few unmet needs were most likely to move to a care home. Conclusion: Unmet need increases over time in those with dementia with mitigating effects of having a partner and initial levels of functioning. Meeting needs at early stages of dementia, especially for those living alone and when functional limitations are low may help slow functional decline.