Abstract
This article focuses on caregiver burden and Alzheimer’s disease. Indeed, family caregivers of Alzheimer’s patients are often subject to many burdens that can affect their physical and psychological health. The aim of this article is to define these different notions and to present the figures linked to them in order to raise awareness of the situation of family carers.
- Introduction
The French population is increasingly ageing. According to the French National Institute for Statistics and Economic Studies (INSEE), France has 67.187 million inhabitants in January 2018, of which 19.6 percent are over 65 years old. According to INSEE, if the trend remains the same, in 2040 one in four inhabitants will be over 65. At the same time, there has been an increase in the prevalence of dementia, which is 6.4% for the population aged over 65, of which 4.4% corresponds to Alzheimer’s disease (Ankri, 2006).
2. Alzheimer’s disease in figures
According to the DSM V diagnostic criteria, Alzheimer’s disease is a mild to major neurocognitive disorder defined by a decline in memory and learning ability with a gradual progression of cognitive and behavioural symptoms. When the disorder is major, this is when the person is dependent and needs help. Its diagnosis is very difficult to establish and remains probabilistic. According to the France Alzheimer association in 2018, there are about three million people affected directly (900,000 patients) or indirectly (caregivers) by Alzheimer’s disease. If it continues to develop, according to France Alzheimer in 2020, 1,275,000 people will be affected. Two types of carers can be distinguished: formal carers, who are health professionals who are part of the medical profession, and informal carers (also known as natural or family carers), who can be a member of the patient’s family, a friend, or anyone who is not part of the medical profession. The carer is then designated by the patient to help, accompany, provide care and moral support for the management of daily activities, in parallel with, or in addition to, the provision of supervised medical care. As the population of Alzheimer’s patients increases, formal carers tend to be more and more numerous. However, not all people with Alzheimer’s want to be institutionalised, and some cannot afford it, so informal carers will also be increasing in number. In this perspective, it is important to look at their well-being and health. Indeed, being an informal carer means bearing a great responsibility which can have consequences on one’s own psychological and physical health. Here we will first look at the notion of carer’s burden. Then we will look at the weight of the stigma of Alzheimer’s disease on the burden of carers. Finally, we will address the subject of ageism.
3. Caregiver burden
As the number of family carers tends to increase, it is important to take an interest in their well-being and health, in order to be able to direct the provision of support. However, it is first necessary to understand the mechanisms of their discomfort and burden, in order to be able to develop these services later on. According to S.H. Zarit, Pamela and J.M. Zarit (1986), burden can be defined as all the consequences on physical and emotional health, social life and financial situation, borne by the carers. According to Bocquet and Andrieu (1999), cited by Kerhervé, Gay and Vrignaud (2008), burden has two components. The first is an objective component, linked to the carer’s function, and is expressed in terms of the tasks carried out daily, the time devoted to the person being cared for and therefore the loss of time for personal activities. The second component is called subjective, and is more related to the psychological consequences of the caregiving relationship on the caregiver, and therefore to the subjective evaluation he/she makes of it. The most widely used burden measurement scale in the literature is Zarit’s Burden Inventory (1986). It was later translated and validated in French by Herbert (1993). This scale is unidimensional and measures the subjective dimension of burden. The study by Andrieu et al (2003) identified factors associated with high burden. Their study showed that these factors increase the burden: the gender of the carer (women being more associated with a high level of burden than men), the fact of using medical aids, the severity of the carer’s illness (notably cognitive and behavioural disorders), the amount of tasks performed per week (the more tasks, the higher the burden). The study also shows that most of the factors mentioned are not modifiable: the gender of the carer or the severity of the patient’s illness. However, being aware of these factors makes it possible to identify populations at risk, so that special attention can be paid to them later on. It is on the modifiable factors that management can be directed from the first symptoms, to relieve the carer.
The study by Kerhervé et al (2008) adds information about the factors that play a role in the perceived burden of carers. Indeed, depression, hostility-treatment (corresponding to the stable dimension of hostility in a person, i.e. the tendency to constantly hold negative cognitions, behaviours and affects towards others [Bruchon-Schweitzer (2002), cited by Kerhervé et al. (2008)]), and the fact of being a lone carer, i.e. without recourse to other carers, are among them. Many carers tend to show depressive symptoms, and there is a consensus in the literature on this, notably that of Zanetti et al. Boutoleau-Bretonnière and Vercelleto (2009) show that many caregivers present symptoms of exhaustion and stress in addition to the prevalence of depression. Ferrara et al (2008) talk about caregivers’ complaints of having less time for themselves, having their social life influenced by the caregiving situation, having a negative perception of their own health, and not getting enough sleep. It is therefore important to focus on the patient-caregiver dyad. While many factors play a role in the perceived burden of caregiving, a few studies have looked at another type of potential factor: the stigma of Alzheimer’s disease.
4. Stigma related to Alzheimer’s disease
The first study linking caregiver burden and stigma in Alzheimer’s disease is that of Werner, Mittelman, Goldstein and Heinik (2011). The purpose of this study was to examine whether family stigma is a predictor of caregiver burden in Alzheimer’s disease (in patient-child dyads), and it found that stigma does indeed increase burden. Recall that according to Goffman (1963), cited by Werner et al. (2011), stigma is an attribute given to a person, and it profoundly discredits them. Rush, Angermeyer and Corrigan (2005), cited by Werner et al. (2011), state that family stigma is “the emotions and beliefs of those around the stigmatised person, including family members and professionals”. Cavayas, Raffard and Gély-Nargeot (2012), provide an overview of stigma related to Alzheimer’s disease and point out that it includes several concepts: attitude, categorisation, social representations, stereotypes, prejudice and discrimination. Cavayas et al (2012) refer to a study by the Institut national de prévention et d’éducation pour la santé (2010), which showed that Alzheimer’s disease is associated in the population with many negative and stereotyped reactions, but also with fear, dread, and anxiety about being personally affected one day.
In the study by Werner et al (2011), the level of family stigma was measured using the Family Stigma in Alzheimer’s Disease Scale (FS-ADS). This study, which took place in the Middle East, paved the way for researchers in other parts of the world, where the stigma associated with Alzheimer’s disease may not be the same. Danko’s (2016) study sought to see whether, in a French context, the stigma surrounding Alzheimer’s disease can also be said to play a role in caregiver burden, and indeed, the results show that there is a link between increased perceived burden and Alzheimer’s disease stigma. Alzheimer’s patients may also be associated with another type of stigma: ageism.
5. Ageism
Ageism is a stigma associated with age. Butler (1969) coined the term and defined it as “a profound psychosocial disorder characterised by institutionalised prejudice, stereotyping, and distancing from the elderly” (Butler, 1978). Ageism, in other words, refers to ideas, beliefs, stereotypes and prejudices about ageing and older people that are associated with discriminatory attitudes towards them. The Fraboni Scale of Ageism (FSA-14) was constructed to represent the concept of ageism presented by Butler (1979) and measures in 14 items the affective and cognitive components of ageism along three dimensions: stereotypes, separation, affective attitudes. This scale has been revised into the FSA-R by Rupp, Vodanovich and Crédé (2005) with 23 items. These scales (FSA-14 and FSA-R) have been translated and validated in French (Boudjemad & Gana, 2009). Ageism has a negative impact on cognitive performance and quality of life of older people (Marquet, Missotten & Adam, 2016). Ageism has also been shown to play a detrimental role in diagnostic testing for Alzheimer’s disease on health professionals and patients (Régner et al. 2016). However, no studies have sought to link ageism and carer burden.
6. Conclusion
Given these figures, it is legitimate to ask whether, like the stigma associated with Alzheimer’s disease, ageism can have an impact on the burden of the family carer of a person diagnosed with Alzheimer’s. It would be relevant to do a full study on this, in order to potentially propose new solutions for caregivers to relieve their burden.
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