Which factors increase informal care hours and societal costs among caregivers of people with dementia? A systematic review of Resource Utilization in Dementia (RUD)

Abstract

Background Nearly 19 million people across OECD countries are living with dementia, and millions of family caregivers are affected by the disease. The costs of informal care are estimated to represent 40–75% of the total dementia cost exceeding formal care time and medical costs. Objective To conduct a systematic review to evaluate the methodological quality and factors associated with high informal care hours per month that increase societal costs, and to identify what type of interventions may alleviate the entire burden of informal and formal caregiving. Methods The systematic review was registered at PROSPERO (15.12.2020). A search in Medline, Embase, PsycINFO, and web of science for observational studies, cost-effectiveness, and cost of illness (COI) analyses on resource utilization in dementia (RUD) was conducted on 1 December 2020. Our inclusion criteria included a requirement that studies had to use the original RUD, RUD-FOCA or RUD lite in terms of hours or days per month, and costs as primary or secondary outcome, OECD countries, within the last 20 years and a sample population comprising persons with dementia (PwD) ≥65 years and their caregivers. We followed the PRISMA, GRADE, PICO guidelines and Drummond criteria to assess the methodology and quality of the studies. Results Of 307 studies, 26 cross-sectional and 3 longitudinal cohort studies were included in the analyses. Two studies had a randomized controlled trial (RCT) design. The methods and cost categories in each study varied widely. Disease severity, caregiver factors, and behavioural and psychological symptoms of dementia (BPSD) were associated with high informal care hours and societal cost. One RCT found no effect of a non-pharmacological intervention on informal care hours, yet another RCT found a cost-effective impact of an in-home respite care programme reducing informal care burden and costs. Conclusion The divergent use of the RUD components within included studies encourage more harmonized analyses. There are only two RCTs on RUD, one of which shows a significant treatment effect. Larger sample sizes and longer follow-up periods are required in future RCTs with dedicated focus on cost-enhancing and resource intensive factors such as disease severity and BPSD. Novel interventions must diversify between caregiver and PwD groups. PROSPERO registration CRD42021226388.

Factors associated with formal and informal resource utilization in nursing home patients with and without dementia: cross-sectional analyses from the COSMOS trial

“…Our results are of key importance for stakeholders and clinicians because creating smaller wards with userfriendly environments, in addition to better staffing can support family involvement and user-involvement. This article extends the traditional method of estimating formal and informal NH care based on ADL and supervision task calculations [7,15,17]. We found that 7 hours of informal direct care per month in Norwegian NHs is relatively low compared to other European countries.…”

“…This article extends the traditional method of estimating formal and informal NH care based on ADL and supervision task calculations [ 7 , 15 , 17 ]. We found that 7 hours of informal direct care per month in Norwegian NHs is relatively low compared to other European countries.…”

“…Higher levels of BPSDs, poor physical function, and cognitive impairment translate into a substantial economic burden [ 17 ]. Prior literature has identified higher age [ 13 , 36 ], poor health [ 13 ], and cognitive impairment [ 13 , 37 ] as factors affecting greater family involvement.…”

“…The RUD-FOCA is widely used, allowing for comparisons across countries and continents [ 21 ]. The tool has shown good retest-reliability and construct validity, and been translated into different languages, including Norwegian, and is being used in clinical trials [ 17 , 20 , 21 ]. The secondary outcome was formal and informal leisure time assessed in hours/week to cover physical (e.g., walking outside, group exercise), mental (e.g., reminiscence, bingo), and social (e.g., performance, music) activities.…”

“…Another study by Buylova et al (2020) demonstrated that agitation caused by advanced dementia is the main determinant for formal and informal care resources utilization [ 16 ]. However, analyses in these studies forgo other factors such as additional BPSD to agitation, ward size, and staffing [ 17 ].…”