Friday, 24 July 2015

Response to Commentary: How influential is carer burden in institutionalisation?

Hilde Verbeek, PhD
Jan PH Hamers, RN, PhD

Response to Commentary on 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 Advanced Nursing. 71(6), 1338 - 1350

In our recent paper, we have analysed factors associated with admission to long-term institutional care for people with dementia across eight European countries (Verbeek et al. 2015). We present results from the RightTimePlaceCare study, the first European study that has assessed factors influencing institutionalisation using standardised primary data collection across countries. We found that there was a wide variation in factors associated with institutionalisation and only few factors could be characterized as universal predictors.

Caregiver burden appeared in our study as one of the most consistent factors across countries to be associated with institutional care admission. In their response, Donnelly and Doyle (2015) write that our conclusion did not match the data presented in the article and they state that caregiver burden is not an important predictor. We disagree with Donnelly and Doyle and argue that our data do show that caregiver burden is an important factor shaping whether or not people with dementia are admitted to institutional long-term care, although its predictive value needs further exploration. 

In the RightTimePlaceCare study, we have included 2,014 dyads of people with dementia and their informal caregivers in eight countries for baseline assessment; 791 were recently admitted to a nursing home (< 3 months) and 1,223 lived at home but were at risk of institutionalisation. Sociodemographic and clinical data were collected. 

First, we investigated known factors from the literature associated with being recently institutionalised (such as cognition, neuropsychiatric symptoms and caregiver burden) as opposed to living at home with dementia and being at risk. Data from the baseline assessments were used (n=2,014). These descriptive analyses showed that caregiver burden was the only factor, next to independence in daily activities, which was significantly associated with institutionalisation in all countries, except for Spain. In Spain, the level of caregiver burden was reported to be very high in both groups at home and in nursing homes. 

As these analyses were conducted using cross-sectional data, no substantive inferences on causality can be drawn, as Donnelly and Doyle point out correctly in their response. However, these results do highlight the importance of caregiver burden in institutionalisation for people with dementia. We identified a specific target group in our study, that is people with dementia who are on the margins of care, meaning that their care needs can be met in more than one setting (i.e. either at home or in institutional long-term care). Caregiver burden significantly discriminated between people with dementia living at home and being at risk for institutionalisation from those people with dementia who recently were institutionalised. 

We agree with Donnelly and Doyle that it is most important to investigate the predictive value of caregiver burden for institutionalisation. In our study, 10% of the baseline sample (n=126) made an actual transition from home care towards institutional long-term care at the follow-up assessment three months later. Although this sub-sample was small, it allowed a first exploration of the predictive value of caregiver burden in institutionalisation of people with dementia.  

Univariate analyses showed that caregiver burden was a significant factor predicting institutionalisation. Caregivers of people with dementia who remained at home during the entire study period reported significantly lower caregiver burden at baseline compared with caregivers of people with dementia who lived at home during the baseline measurement and moved towards institutional care three months later (p<0.009). On average, the burden score as assessed with the Zarit Burden Interview was 3 points higher for caregivers of people who were admitted during our study compared with caregivers of people with dementia who remained at home. This pattern of a higher caregiver burden at baseline being related to institutionalisation three months later was similar across all countries. The difference was highest for Spain and England (14.4 and 11.6 respectively). In other countries this was at least 4.5 points. Only in France and Finland, the difference in caregiver burden between the groups was very small (only 0.5 to 1.5 points). 

Unfortunately, our transition sample was not balanced across countries. Over a third of our sample was from France (n=44) and also many people from Finland (n=20) made a transition. Furthermore, only very few people from Spain (n=4) were admitted to institutional care after three months. This may have introduced bias in our multivariate analyses, which especially may have affected the factor caregiver burden. In countries where the difference between caregiver burden at baseline and follow-up was largest (i.e. Spain), only very few people made the transition towards institutional care, whereas countries in which the difference in caregiver burden was smallest (France and Finland) were overrepresented in our transition sample. In our multivariate analyses, taking into account other factors such as cognition and neuropsychiatric symptoms, caregiver burden was no longer significant. Viewed as a causal pathway, inevitably carer burden is determined by behavioural and psychological symptoms of dementia, thereby shaping the propensity to institutionalisation. In addition, we also think that problems arising from a small and unbalanced sample size have affected the power of testing, which may have biased our results. Results should therefore be interpreted carefully.

Taking into account results from all analyses (i.e. descriptive and predictive), our results suggest that caregiver burden is an important factor in the process of institutionalisation for people with dementia and their informal caregivers. As caregivers have a crucial role in the decision about transition towards institutional care (e.g. Davies and Nolan, 2003), their psychological wellbeing and quality of life have been shown to be important determinants of admission (e.g. Argimon et al, 2005; Bleijlevens et al. 2015).  Of course only a longitudinal cohort study could address this conclusively and we would of course be very to undertake this, albeit a very costly study.

Hilde Verbeek, PhD
Assistant Professor

Jan PH Hamers, RN, PhD
Professor of Care of Older People
Department of Health Services Research
Maastricht University
The Netherlands


On behalf of all co-authors and other members of the RightTimePlaceCare Consortium


Argimon J.M., Limon E., Vila J. & Cabezas C. (2005) Health-related quality-of-life of care-givers as a predictor of nursing-home placement of patients with dementia. Alzheimer Disease and Associated Disorders. 19(1), 41–44

Bleijlevens, M. H.C., Stolt, M., Stephan, A., Zabalegui, A., Saks,K., Sutcliffe, C., Lethin, C., Soto, M.E. & Zwakhalen, S. M. G. (2015). Changes in caregiver burden and health-related quality of life ofinformal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study. Journal of Advanced Nursing. 71(6), 1378–1391

Davies C.H. & Nolan M.F. (2003) Making the best of things: relatives' experiences of decisions about care-home entry. Ageing and Society. 23, 429–450.

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 Advanced Nursing. 71(6), 1338 - 1350

Monday, 29 June 2015

The RN4CAST@IT project

Roger Watson, Editor-in-Chief

You can listen to a podcast version of the editorial by Sasso et al. 2015 by one of the members of the RN4CAST@IT team Dr Giuseppe Aleo from The University of Genoa.


Sasso, L., Bagnasco, A., Zanini, M., Catania, G., Aleo, G., Santullo, A., Spandonaro, F., Icardi, G., Watson, R. and Sermeus, W. (2015), RN4CAST@IT: why is it important for Italy to take part in the RN4CAST project?. Journal of Advanced Nursing. doi: 10.1111/jan.12709

Monday, 22 June 2015

JAN - a top ten journal

Roger Watson, Editor-in-Chief

I am very pleased to tell you that the JAN Thomson Reuters impact factor for 2014 increased from 1.685 to 1.741 moving us to the 10th place out of 110 academic nursing journals.  This represents a 5% increase in our citations from 11,383 in 2103 to 12,024 in 2014.  JAN remains the highest cited academic nursing journal in the world with submissions from over 50 countries annually.

Tuesday, 16 June 2015

Smoking among health professional students

Roger Watson, Editor-in-Chief

Smoking among health professionals is a paradox; why would people well aware of the risks do it? But they do and smoking among health professional students is common as shown by the plumes of smoke rising up from any group of nursing students at my university as they cross the campus.

A study form Spain of nursing and physiotherapy students by Ordás et al. (2105) titled:'Changes in use, knowledge, beliefs and attitudes relating to tobacco among nursing and physiotherapy students: a 10-year analysisand published in JAN analyses 'changes in prevalence, knowledge, beliefs and attitudes relating to smoking among undergraduate nursing and physiotherapy students' over 10 years.  The study showed that these students still smoked but that over the 10 years of the study (2003-2013) that it has reduced as follows: 'The proportion of smokers among nursing and physiotherapy students in 2003, 2008 and 2013 was 29 .3%, 24 .7% and 18. 2% respectively.'

While the above may be good news, there was an appalling lack of knowledge among these students of the risks they were taking.  Specifically: 'Students were not aware of any relationship between pulmonary emphysema, bladder cancer, coronary artery disease or
leukoplakia and tobacco use, this lack of knowledge increasing significantly over the years, in some cases to over half of the cohort. This was the case for bladder cancer where the lack of awareness of any relationship rose from 32-55.3%. Deficient knowledge was also noted in respect of links between health problems and exposure to second-hand smoke. For instance, the percentage of students that did not identify any relation with cardiovascular diseases, childhood asthma and under-weight new-born children increased statistically over the years, in the case of under-weight new-borns reaching 31%.'

In conclusion, the authors say: 'Most of the students who smoked had begun to do so before commencing their university studies. Hence, smoking prevention policies should pay special attention to adolescents and continue through university education, but should also implement active programmes to help university sudents who smoke to give up the habit. The decline in the
level of awareness of features of smoking declared by students of Health Sciences over the ten years provides evidence of a significant deficiency in undergraduate training.

You can listen to this as a podcast


Ordás B, Fernández D, Ordóňez C, Marqués-Sánchez P, Álvarez MJ, Martínez S, Pinto A (2105) Changes in use, knowledge, beliefs and attitudes relating to tobacco among nursing and physiotherapy students: a 10-year analysis Journal of Advanced Nursing doi: 10.1111/jan.12703

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

Health Problems of Military Staff

Adem Parlak
Sedat Devele
Gulhane Military Medical Academy

Nehir Parlak

Etimesgut Public Hospital

We are very interested in the article by Elliot (2015) on military nurses' experiences returning from war. In this article psychological problems of military nurses after their missions are mentioned. We think that this article makes a significant contribution to the literature because it mentioned problems which military medical staff face because of their duties, unlike other health professionals.

Although education levels of nurses are not specified in the study, we can understand from the age of participants that they were experienced. It is also understood that staff served several times in Afghanistan and Iraq in the scope of their duties. In our country military medical staff take active positions as indicated in Elliott’s study or in response to the casualties occurred after terrorist attacks. In this context, we would like to share our experiences. Disorders which Elliott has mentioned are observed in almost every geographical area in military medical personnel undertaking heavy duties. Doctors and nurses carrying out military health services in our country are trained by a faculty particularly experienced in this regard. Therefore, to cope with conditions which they may face with, doctors, nurses and non-commissioned officers dealing with military health services are informed and trained by apprenticeship, military drills and simulated military operations. In these trainings experienced staff play key roles by sharing their experience. However, by assigning staff to areas with the possibility of military operations, they gain experience that will reduce the likelihood of encountering psychological problems. Maintenance of a supportive environment is also be useful in solving the problems staff faced (Schok et al. 2010, Gibbons et al. 2012). The educational institutions of participants in Elliot’s study or their training for combat conditions were not specified. We consider that this could affect the have enhanced the study. However, we thank to Elliott for her contribution.


Elliott B. (2015) Military nurses’ experiences returning from war. Journal of Advanced Nursing 71, 1066–1075.

Gibbons S.W., Hickling E.J. & Watts D.D. (2012) Combat stressors and post-traumatic stress in deployed military healthcare professionals: an integrative review. Journal of Advanced Nursing 68, 3–21.

Schok M.L., Kleber R.J., Boeije H.R. (2010) Men with a mission: veterans meanings of peacekeepingin Cambodia. Journal of Trauma and Loss 15, 279–303.