A Longitudinal Study of Functional Unmet Need Among People with Dementia

Abstract

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.

The Consequences of Unmet Needs for Assistance With Daily Life Activities Among Older Adults: A Systematic Review

“…The study sample sizes ranged from 89 to 10,263; all were larger than 200, except for two studies (Morasso et al, 1999; Read et al, 2021). Half of the studies focused on older adults aged 65 years or over, while the others had different lower bounds for age, ranging from 18 (mean age > 60 years) to 75 years.…”

“…Both focusing on people with dementia, Gaugler et al (2005) reported a higher likelihood of nursing home admission with unmet ADL needs (OR = 1.26,95% CI = [1.20,1.33]). The study by Read et al (2021) showed the opposite association, with a higher number of unmet ADL/IADL needs related to a lower likelihood of moving to among persons with lower levels of physical limitations, and the association The association between unmet ADL needs and incidence of falls between 6 and 12 months after transition was not significant after adjusting other factors (OR = 1.37, 95% CI = [0.67, 2.77]). Momtaz et al (2012) Cross-sectional evidence Unmet ADL/IADL needs increased two times the likelihood of falls (OR = 2.10, 95% CI = [1.01, 4.43]), after adjusting for age, gender, and disability.…”

“…DePalma et al ( 2013) had one more circumstance in the definition of unmet need, which was a person having to wait to do a task due to insufficient assistance. Some other studies defined unmet needs as requiring a complete absence of assistance, considering an unmet need as occurring in the circumstance that a participant had no assistance and needed it, and not in cases where participants were receiving some assistance but needed more (Hu & Wang, 2019;Marrero et al, 2019;Momtaz et al, 2012;Morasso et al, 1999;Read et al, 2021;Sands et al, 2006;Tennstedt et al, 1994;H. H. Wang et al, 2016).…”

Factors Associated with Psychotropic Medication Use in People Living with Dementia in the Community: A Systematic Review and Meta-Analysis

“…Living alone was also associated with psychotropic use, potentially pointing to unmet needs being treated pharmacologically. These needs could relate to difficulties navigating services and accessing community supports [ 73 ] and increased rates of hospitalization and placement [ 74 ].…”

Projected costs of informal care for older people in England

“…The re-configuration of patterns of care will not be costfree, however. Studies have reported that unmet needs can lead to an accelerated progression of mental health problems and functional disabilities, which in turn incurs health and long-term care costs [47,48]. In addition, the international literature has shown that intensive caregiving can have negative consequences for caregivers' mental health or force caregivers to leave employment, which is associated with costs for mental health care and a loss of productivity or earnings [49][50][51][52].…”