Thursday, 11 June 2015

How influential is carer burden in institutionalisation?

Nora-Ann Donnelly & Frank Doyle
Royal College of Surgeons in Ireland, Dublin

The recent article by Verbeek et al. (2015) analyses inter-country variation of factors associated with institutionalisation of people with dementia. It is very beneficial to have empirical data from a number of European countries on the factors which influence the admission of people with dementia to long-term care. However, we would like to put forward some comments for consideration regarding the authors’ conclusions, which we feel do not match the data presented in the article.

The authors conclude in both the Abstract and Discussion that ‘caregiver burden appeared the most consistent factor associated with institutionalisation’ (Verbeek et al. 2015 p.9). However, from our examination of the results as presented, the findings do not appear to fully support this assertion.

Firstly, the authors examine differences between people with dementia who were recently admitted to a nursing home (between 1-3 months), compared with those living at home with dementia who were regarded as at risk of institutionalisation. This analysis enables us to examine how these independent groups differ. However, it does not take into account the effect of institutionalisation on caregiver perceptions of burden. For example, previous research has found that carers are likely to experience considerable reductions in burden after nursing home admission (Gaugler et al. 2011). Given that institutionalisation can alleviate burden, the analysis, as presented, is not an accurate test of whether burden is associated with subsequent institutionalisation, but merely a demonstration of difference between two independent groups. This association could be confounded by other factors.

The authors do provide a more appropriate test of the association between burden and subsequent institutionalisation within the article, but again it is questionable whether the reported results support their conclusions. The authors followed people with dementia and their carers who lived at home and analysed the differences at baseline between those institutionalised after three months and those who were not. The univariate analysis found that those who had made the transfer to institutional long-term care had an informal caregiver who experienced a higher caregiver burden at baseline than people who remained at home (t=-2.31; p=0.021). However, this association did not survive adjustment for other factors. The overall multivariate analysis using a multi-level model found three other factors that explained the transition from living at home to institutional care at follow-up. These were: living situation; neuropsychiatric symptoms; and cognitive status. Unfortunately, the authors did not report the overall multivariate model including burden. Therefore, we do not know the results for caregiver burden when other factors have been taken into account. If burden is a consistent factor in institutionalisation, it should remain so after taking both the characteristics of the person with the dementia and the carer into account. The actual reported results therefore contrast with the conclusions of the article, and it seems that burden is not a consistent factor in institutionalisation when controlling for these other important factors.

However, these results are actually more in keeping with our recent work, which has meta-analysed the association between carer stress, distress and burden and subsequent care recipient institutionalisation. We found, from 54 articles, that while carer stress has significant association with institutionalisation, the actual size of this effect is negligible (SMD=0.05, 95% CI=0.04-0.07; I2=79.2%; p=<0.001). Moreover, sensitivity analysis found that whether analysing the association between carer burden, stress, distress or depression the effect size remains small to negligible (Donnelly et al. 2015). Furthermore, there was evidence of significant small study effects (potential publication bias). These results, and indeed the results of Verbeek et al. suggest that other factors are more critical for institutionalisation than carer stress or burden.

Combined, these findings should not be interpreted as undermining the significance of chronic stress on a carer. Indeed, several meta-analyses and systematic reviews have demonstrated the detrimental impact care stress can have on a carer’s psychological well-being and physical health (Pinquart & Sorensen 2003, Schulz & Sherwood 2008). However, the results as presented do not support the contention that carer burden is an important predictor of institutionalisation. While it may be a significant predictor, it is not an important one, even if we would like it to be so. As a research community it is important that we direct our efforts towards factors which are truly predictive of health service utilisation, based on a rigorous review and evaluation of the available evidence.

Ms Nora-Ann Donnelly
MA (SocSci) (Hons), MSc
PhD Scholar Health Services Research,
Department of Psychology,
Royal College of Surgeons in Ireland,

Dr Frank Doyle
BA (Hons), MLitt, PhD, Reg Psychol PsSI
Senior Lecturer
Department of Psychology,
Royal College of Surgeons in Ireland,


Donnelly N-A, Hickey A, Burns A, Murphy P, Doyle F (2015) Systematic Review and Meta-Analysis of the Impact of Carer Stress on Subsequent Institutionalisation of Community-Dwelling Older People. PLoS ONE 10(6): e0128213. doi: 10.1371/journal.pone.0128213

Gaugler, J. E., Roth, D. L., Haley, W. E. & Mittelman, M. S. (2011). Modeling trajectories and transitions: results from the New York University caregiver intervention. Nursing Research, 60, S28-S37

Pinquart, M. & Sorensen, S. (2003). Differences between caregivers and non-caregivers in psychological health and physical health: a meta-analysis. Psychol Aging, 18, 250-67

Schulz, R. & Sherwood, P. R. (2008). Physical and Mental Health Effects of Family Caregiving. The American Journal of Nursing, 108, 23-27

Verbeek, H., Meyer, G., Challis, D., Zabalegui, A., Soto, M. E., Saks, K., Leino-Kilpi, H., Karlsson, S., Hamers, J. P. & RightTimePlaceCare Consortium (2015). Inter-country exploration of factors associated with admission to long-term institutional dementia care: evidence from the RightTimePlaceCare study. Journal of Advanved Nursing doi: 10.1111/jan.12663

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