Informal and formal care among persons with dementia immediately before nursing home admission

Arnt Egil Ydstebø,Sverre Bergh,Geir Selbæk,Corinna Vossius,Jurate Šaltytė Benth

doi:10.1186/s12877-020-01703-8

Abstract

BackgroundDementia is a care intensive disease, especially in the later stages, implying in many cases a substantial carer burden. This study assesses the use of formal and informal care resources among persons with dementia during the last month before nursing home admission. It also describes main providers of informal care and assesses the extent of informal care rendered by the extended social network.MethodsIn this cross-sectional study, we collected data about persons with dementia that were newly admitted to a nursing home in Norway. Information about the amount of formal and informal care during the last 4 weeks preceding nursing home admission was collected from the primary caregivers. Clinical data were collected by examining the patients, while sociodemographic data was collected from the patients’ files.ResultsA total of 395 persons with dementia were included. The amount of informal care provided by the family caregiver was 141.9 h per month SD = 227.4. Co-resident patients received five times more informal care than non-co-residents. Informal care from the extended social network was provided to 212 patients (53.7%) with a mean of 5.6 (SD = 11.2) hours per month and represented 3.8% of the total informal care rendered to the patients. Formal care was provided to 52.7% of the patients with a mean of 18.0 (SD = 50.1) hours per month. Co-residency was significantly associated with more informal care, and the associations varied with respect to age, relation to the caregiver, and the caregiver’s working situation. Good/excellent general health was associated with less formal care.ConclusionPersons with dementia on the verge of admission to a nursing home are mainly supported by the family caregiver, and the use of informal care is particularly high among co-residents. In order to delay nursing home admission, future research should explore the unrealized care potential in extended social networks, as well as the potential for increasing the number of recipients of formal care services.

Highlights

Dementia is a care intensive disease, especially in the later stages, implying in many cases a substantial carer burden
Study population The REDIC-NH cohort consists of 696 patients, among which 445 had dementia and were permanently admitted to a nursing home
The extent of informal care was substantially larger than the extent of formal care, and the majority of the informal care was delivered by the family caregiver, while the extended social network only contributed 3.8%

Summary

Introduction

Dementia is a care intensive disease, especially in the later stages, implying in many cases a substantial carer burden. This study assesses the use of formal and informal care resources among persons with dementia during the last month before nursing home admission. It describes main providers of informal care and assesses the extent of informal care rendered by the extended social network. A considerable amount of informal care is provided in the patient’s home, and the burden of care is one of the main important factors associated with nursing home admission (NHA) [6,7,8,9,10,11]. Previous studies have found associations between co-residency and increased informal care, while more formal care was associated with persons with dementia living alone [12, 15, 17, 20]

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