During the first year of my Master, I wanted to discuss the issue of clinical exhaustion which affects the members of families taking care of their parent suffering from Alzheimer’s disease. My interest in this population stems from the sad fact that health policies and general public tend to neglect the role and suffering of families affected by the disease of a loved one. Today, however, in a society where the population is ageing at a fast pace and where the number of people with Alzheimer’s disease is increasing dramatically (OMS, 2016), it seemed more than ever to me necessary to consider this type of informal care.
So after some research, I discovered that all the studies related to this topic highlight a feeling of burden (Decelle, 2013 ; Kerhervé, Gay and Vrignaud, 2008 ; Andrieu & al, 2003), and a chronic stress among family caregivers which would be associated to the extent of care and progression of the patient’s disorders (Pinquart and Sörensen, 2003 ; Raggi & al, 2015 ; Tyrrell, 2004 ; Gaucher, Ribes, and Darnaud, 2004).
The interesting thing here is that the prolonged exposure to stressful situations was already described in literature as promoting clinical exhaustion among medical personnel (Maslach and Pines, 1977 ; Maslach and Jackson, 1981 ; Freudenberg, 1974 ; Bradley, 1969 ; Truchot, 2004 ; Daloz, 2006 ; Coutanceau, Bennegadi, and Bornstein, 2016), but while their role is similar, previous studies have overlooked the ways in which caregivers could be affected as well.
Therefore, in order to answer this question and in line with existing work about professionals’ burnout, we have assumed that caregivers will present a significant level of burden and clinical exhaustion. In a more exploratory way, and relying on theoretical elements, we hypothesized that informal caregivers whose relatives are still at home will certainly be more concerned by this issue, due to the fact that they are solicited on a daily basis, without respite, unlike family members whose loved ones are already in institutions. Finally, we thought that socio-demographic data such as sex, age, relationship with the patient, perceived support, duration and nature of care (home versus institution) and duration of placement (for patients who are no longer in home care situations, how long do they in institutional care?), would be predictors of overwork.
In order to carry out this research, I had the opportunity to meet twenty-one families who were still providing home care or who had delegated this task to a specialized institution. The majority of the appointments took place in two retirement homes, each one equipped with an Alzheimer’s unit and in which I was doing my internship. Furthermore, in addition to these care facilities, it is important to mention that I have also benefited from the support of the Caregivers’ Home in Nantes, the experience of the President of France Alzheimer’s in Normandy and the help of the coordinating doctor of the two retirement homes. Thanks to them I have been able to learn more about the experiences lived by families, their relationships with the disease, their state of mind regarding the decline of their close family member’s skills but above all I was able to attend support groups.
At the end of the survey, the average age of caregivers was 58.48 years, 12 were children, 6 were spouses, 3 were other family members. In total there were 12 women and 9 men, an imbalance resulting from the prevalence of women in the caregiver population.
During these exchanges, all the participants were asked to fill several tests. Among them, I chose to use the Zarit that measures the burden of caregivers (Zarit, Reever, and Bach-Peterson, 1980); the Pathological Burnout Scale that assesses cognitive exhaustion, inefficiency in activity and relational disinvestment (Le Borgne and Boudoukha, 2016), and finally the Maslach Burnout Inventory (MBI), rehabilitated here for family caregivers and also composed of three dimensions (emotional exhaustion, personal accomplishment and depersonalization). As a result, the MBI does not provide a global burnout score but a score for each evaluated dimension. More precisely, according to Maslach’s criteria, it is necessary to obtain high scores on the dimension of emotional exhaustion and depersonalization and, on the other hand, to obtain a low score in personal accomplishment to conclude that there is general exhaustion (Maslach and Jackson, 1981).
In the purpose, to confirm or reject our hypotheses, we conducted an analysis of variance (Anova) to notably check the influence of the status of the caregiver on the exhaustion and burden felt.
We also chose to do a t-test to see the impact of sex, help provided (or not), type of care (home or institution) on the family caregiver’s state of « overwork ». In addition, correlation analyzes were carried out to measure the nature of the link between the different tests and linear regressions were used to determine the impact of age, placement duration, and duration of care on clinical exhaustion. In other words, we wanted to see in this way, how the duration of home care impacts the level of exhaustion of family caregivers. We also wanted to study how the use of placement in retirement home could alleviate the burden felt especially when the close relative is in institution for a long time.
After statistical analysis, the results revealed a moderate level of burnout for the emotional exhaustion dimension, low for the depersonalization dimension and high for the loss of personal accomplishment. Although the average Zarit score, is high, it is not pathological. Finally the pathological burnout scale indicates an average rather close to the minimum score, which allowed us to conclude in the absence of an actual danger.
In more details, we have observed a correlation between the three tests which had been run, in the sense that the higher the burden is, the higher will be the level of exhaustion. Regarding the socio-demographic data, none of the analyses allowed us to accept our initial hypotheses. However, we observe a significant age trend in the depersonalization dimension such that the youngest caregivers have highest scores. It may be due to the fact that youngest caregivers have to perform their professional function in parallel. We also note for personal accomplishment that “other family members” have significantly higher scores compared to spouses, which means that they derive more benefit from their caregiving role than spouses. They are less tired, maybe because they are not everyday with their relatives. Beyond that, we find a significant trend in inefficiency for those who have their relatives in retirement homes, so that the caregivers for whom the placement is the most recent are those who show the highest scores on this dimension. This result can be explained by the fact that giving up the care of their parent is not an easy choice despite the burden they feel. It takes time to feel less guilty. Finally, the cognitive exhaustion of the pathological burnout scale also reveals significantly higher scores for caregivers whose loved ones have been recently placed, maybe it is because a short time ago they were still involved daily in the care of their loved ones.
In conclusion, according to the results, there is a general exhaustion among caregivers associated with a feeling of overburden. Moreover, according to the testimonies it seems that the number of tasks to be performed by the caregiver, their nature and the time allotted to their completion are predictors of moral and physical exhaustion. Furthermore, it is possible that these criteria may increase the stress already induced by the progression of the disorders, the surveillance and the responsibility that the disease permanently implies. Nevertheless, it is important to note that behind each care there is a different story. Indeed, knowing the nature of the relationship that existed prior the development of the illness is essential in order to understand the level of involvement and the gratification felt by the family caregiver in providing his or her mission. In other words, even if tasks are similar from one caregiver to another, the sources of stress vary according to the personality and the subjective teaching that the caregiver retains from this experience.
A special thought to all families met and their loved ones.
Bibliography:
Andrieu, S et al. (2003). Charge ressentie par les aidants informels de patients atteints de la maladie d’Alzheimer au sein de l’étude REAL.fr : méthode de mesure et facteurs associés. La revue de médecine interne, 24(3), 351-359.
Boudoukha, A.H. (2009). Burn-out et traumatismes psychologiques. Paris : Dunod.
Bradley, H.B. (1969). Community-based Treatment for Young Adult Offenders. Crime and Delinquency, 15(3), 359-370.
Coutanceau, R., Bennegadi, R., & Bornstein, S. (2016). Stress, burn-out, harcèlement moral : De la souffrance au travail au management qualitatif. Paris : Dunod.
Daloz, L. (2016). Introduction à la clinique du burnout et à la démotivation. Paris : L’Harmattan.
Decelle, D-A. (2013). Alzheimer : le malade, sa famille, et les soignants. Paris : Albin Michel.
Freudenberger, H. J. (1974). Staff burn-out. Journal of Social Issues, 30(1), 159-165.
Gaucher, J., Ribes, G., & Darnaud, T. (2004). Alzheimer l’aide aux aidants. Une nécessaire question éthique. Lyon : chronique sociale.
Kerhervé, H., Gay, M-C., & Vrignaud, P. (2008). Santé psychique et fardeau des aidants familiaux de personnes atteintes de la maladie d’Alzheimer ou de troubles apparentés. Annales Médico-Psychologiques, 166(4), 251-259.
Maslach, C., & Pines, A. (1977). The burn-out syndrome in the day care setting. Child Care Quarterly, 6, 100-113.
Maslach, C., & Jackson, S. E. (1981). The measurement of experienced burnout. Journal of Occupational Behavior, 2, 99-113.
OMS. (2016). La démence. Spotted in http://www.who.int/mediacentre/factsheets/fs362/fr/
Pinquart, M., & Sörensen, S. (2003). Differences Between Caregivers and Noncaregivers in Psychological Health and Physical Health: A Meta-Analysis. Psychology and Aging, 18(2), 250–267.
Raggi, A., & al. (2015). The burden of distress and related coping processes in family caregivers of patients with Alzheimer’s disease living in the community. Journal of the Neurological Sciences, 358(1-2), 77-81.
Truchot, D. (2004). Épuisement professionnel et burnout : concepts, modèles, interventions. Paris : Dunod.
Tyrrell, J. (2004). L’épuisement des aidants familiaux : facteurs de risque et réponses thérapeutiques. Dans J. Gaucher., G. Ribes et T. Darnaud (dir.), Alzheimer et l’aide aux aidants : une nécessaire question éthique (pp. 48-62). Lyon : Éditions Chronique Sociale.
Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20, 649-655.
(picture spotted in http://presse.inserm.fr/maladie-dalzheimer-vers-une-nouvelle-approche-dimmunotherapie/22210/)
