Caring for an elder with Alzheimer's Disease: Family Dynamics and Network of Support

Caring for an elder with Alzheimer's Disease: Family Dynamics and Network of Support

In the context of an ageing population in Europe, we can expect a rapid and exponential increase of persons suffering Alzheimer's disease.
The aim of the project is to study, on an empirical basis, and in the specific context of Portuguese family dynamics and support networks, the care for elderly persons. Since family members are considered as the main actors of caregiving, both in its emotional and instrumental dimensions, in this study we try to understand how family organisation responds to the illness of one of its members.
By means of a qualitative research strategy including face-to-face interviews with family members - of persons suffering from Alzheimer's disease, we will try to identify the persons who play a role in caregiving, the kind of intervention they provide and to understand the logics underlying their interventions.
Estatuto: 
Participant entity
Financed: 
No
Keywords: 
Carers, Alzheimer, Family Networks
In the context of an ageing population in Europe, we can expect a rapid and exponential increase of persons suffering Alzheimer's disease.
The aim of the project is to study, on an empirical basis, and in the specific context of Portuguese family dynamics and support networks, the care for elderly persons. Since family members are considered as the main actors of caregiving, both in its emotional and instrumental dimensions, in this study we try to understand how family organisation responds to the illness of one of its members.
By means of a qualitative research strategy including face-to-face interviews with family members - of persons suffering from Alzheimer's disease, we will try to identify the persons who play a role in caregiving, the kind of intervention they provide and to understand the logics underlying their interventions.
Objectivos: 
The aim of this study is to understand how families react and organize themselves when one of their members is suffering from Alzheimer's disease (AD). In the European context of social and demographic changes (aging population, low fertility, increasing number of women on the labour market), the consequences of this illness in term of loss of autonomy and its caring have to be investigated. <br />There is a double interest in studying Alzheimer's disease more specifically: first, since it is a risk linked to age we can expect it to increase dramatically in the years to come. Therefore it appears as a society challenge, as well as a health and social policy preoccupation. Besides, and this is the second reason, AD is a particular and extreme case of chronic disease involving relatives to ensure caregiving. <br />In the specific context of Portugal we will consider the role of family in caregiving for an AD member, and how they manage this situation. We will analyze how family networks intervene and what are the strategies built up by families. We also intend to investigate the different kinds of support (informal and formal) they mobilise in order to cope with this tremendously disturbing situation.
State of the art: 
Alzheimer's disease, the most common form of dementia, is a neuro-degenerative brain disease, characterised by the slow, progressive and irreversible loss of cognitive functions, followed by behavioural troubles leading to a state of complete dependency. Since no curable treatment exists, the care is assumed most of the time by family members (when they exist), except for acute phases, and takes place outside the care structures, according to the pattern for chronic disease. <br />Up until now, sociological studies on chronic diseases have mostly focused on the illness experience from the patients' viewpoint, while relatives and family engagement were only secondarily treated (Conrad, 1987; Strauss and Corbin, 1988; Bury, 1991, 1997). The main concepts are the biographical rupture (Bury, 1982), negotiation, coping and the management work of the illness (Strauss and al., 1985; Baszanger, 1992). <br />The studies in aging sociology and family sociology focus on the family's role in caregiving for elderly dependent persons at the home place. These studies focus on the profile of the persons engaged in the caregiving and also describe the various activities and tasks assumed (Gubrium, 1988 ; Martin and Lesemann, 1993 ; Martin, 1995 ; Bungener, 1999 ; Cresson, 1995). <br />Work on familial solidarity has underlined the weak attention given by social policies to the investment of relatives, too often considered as taken for granted or natural (Martin and Lesemann, 1993). Family lay work, although central in health care, is often invisible and under-estimated, leading to the neglect of carers? needs. In studies on dementia, relative carers have a better visibility but social science research on the topic often focuses on the burden associated with the work, privileging stress and burden effect approaches, despite its simplistic character (Abel, 1990; 1999; Jo&euml;l, 2000). In addition, since caregiving is often assumed by women, this situation has been studied in a gender perspective (Abel, 1999; Cresson, 1995; Membrado, 1998, 1999), considering the conciliation between caregiving for an elderly parent and work life. <br />One other important and mostly Anglo-Saxon set of studies has been developed on specific pathologies, one of them being AD. Addressing informal care and caregivers these studies focus mostly on the consequences of caring on the carers? health as well on the caregiving burden (Zarit and al., 1985; Biegel and al., 1991; Bocquet and al., 1995; Andrieu and al., 2002; Cl&eacute;ment, 2000; Jo&euml;l and al., 1996). <br />In all those studies caregiving is often described as a set of physical, moral and social consequences that close relatives have to endure, which is a reductive approach of the situation. Moreover, these studies don?t allow for a global understanding of caregivers? reactions and responses toward the situation. <br />The capacity to choose and to take decision, as well as the role of carers in the definition of the situation is not dealt with. Studies on caregivers and more specifically those on Alzheimer?s disease are numerous, but few of them have a qualitative approach, and still fewer have a sociological approach.
Coordenador ICS 
Start Date: 
01/05/2007
End Date: 
01/05/2010
Duração: 
36 meses
Closed