Receipt of help by people with cognitive impairment: results from the English Longitudinal Study of Ageing

Objectives We investigated whether people with dementia or low memory/orientation reported more help misaligned with needs - more unmet need and/or more unrequired help - than other people with similar levels of functional limitation, and examined associations with quality of life. Methods From pooled English Longitudinal Study of Ageing data from waves 6, 7, and 8, we identified community-dwelling people aged 50+ with: dementia (n= 405); low memory/orientation but no dementia (n= 4520); and intact memory/orientation (n= 10,264). Unmet need (not receiving help for the functional limitation) and unrequired help (receipt of help without the respective functional limitation) were used as outcomes in two-part regressions. Quality of life (CASP-19) was used as a continuous outcome in a linear regression. Functional limitation and its interaction with cognitive status and socio-demographic factors were included in the models. Results Those with dementia or low memory/orientation but few functional limitations reported more unmet needs and unrequired help than their counterparts with intact memory/orientation. At high levels of limitations, the needs of those with dementia or lower memory/orientation were met more often and the receipt of unrequired help was similar compared to those with intact memory/orientation. Unmet need and unrequired help were associated with poorer quality of life. Conclusions Unmet need and unrequired help were particular challenges for those with poorer cognition and potentially at early stages of dementia; they were associated with lower quality of life. Our results highlight the importance of good-quality timely diagnosis, identification of needs, and person-centred assessment to help improve quality of life.