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

Email: h.verbeek@maastrichtuniversity.nl

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


References

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