The association between aspects of carer distress and time until nursing home admission in persons with Alzheimer’s disease and dementia with Lewy bodies

• Published in: International psychogeriatrics 2021-04, Vol.33 (4), p.337-345
• Main Authors: Terum, Toril Marie, Testad, Ingelin, Rongve, Arvid, Aarsland, Dag, Svendsboe, Ellen, Andersen, John Roger
• Format: Article
• Language: English
• Subjects: Activities of daily living; Alzheimer's disease; Caregivers; Cognitive ability; Cohort analysis; Dementia; Developmental delays; Ethics; Home health care; Informal care; Nursing homes; Original Research Article; Patient admissions; Preservation; Psychological distress; Quality of life; Questionnaires; Social life & customs; Standard deviation; Variables
• ISSN: 1041-6102; 1741-203X
• DOI: 10.1017/S1041610220000472

The aim of this study was to explore the association between specific aspects of carer distress and time until nursing home admission (NHA) in people with mild dementia. Prospective cohort study. Participants were recruited from the Dementia Study of Western Norway (DemVest). This study included 107 participants admitted to a nursing home who were diagnosed with Alzheimer's disease (AD, n = 64) and dementia with Lewy bodies (DLB, n = 43) and their primary carers. The Relative Stress Scale (RSS) was used to assess the level of reported distress in carers. Adjusted partial least square (PLS) prediction analysis of baseline items of the RSS was used to study the associations between individual items of the RSS and time until NHA. Carer distress is an important contributor to early NHA, explaining 19.3% of the total variance of time until NHA in the model without covariates. In the adjusted PLS model, the most important RSS predictors of time until NHA were feeling frustrated (estimate = -137; CI, -209, -64.5), having limitations on social life (estimate = -118; CI, -172, -64), not being able to get away on vacation (estimate -116; CI, -158.3, -73.7), and feeling unable to cope with the situation (estimate = -63; CI, -122.6, -3.4). Preservation of the informal care capacity represents important steps for improving the management of resources in dementia care. This study identifies aspects of carer distress associated with a shorter time until NHA. Looking beyond the sum score of the RSS helps promote the development of flexible and tailored interventions and perhaps delay NHA.