The demented, the relative and their stigma

Student thesis: Master Thesis and HD Thesis

  • Niklas Brinch Debel
4. term, Sociology, Master (Master Programme)
Dementia is a widespread disease of which 90.000 people in Denmark suffer from. (Videnscenter for demens 2)
In recent years dementia has been granted a bigger role in the media, where books, films, TV- and radio shows all cover different aspects of the disease.
This thesis will deal with relatives of the dementia, their caregiver role and the consequences thereof.
The thesis is based on participatory observation in kin groups and two interviews, as well as a large amount of qualitative data collected during a one year stay at “Aktiv med demens”, from participating in several different kin groups. Through a hermeneutic approach, the thesis seeks to uncover how relatives experience and manage their relationship with their demented family member.

Throughout the analysis it is shown how the relatives experience their relationship with the demented family member as being caregivers as other studies show (Egilstrød, Ravn og Petersen 2018). This caregiver role is perceived negatively by the majority of the relatives as it is viewed as stigmatizing. This is because others around them, who are not relatives themselves or assume the role of caregiver, cannot understand what the relative is going through with the demented person. In this way, being a caregiver and doing negative things can be perceived as a defect/lack of individual character of the next of kin. (Goffman 1963: 14) Therefore, when the next of kin meet people who don’t understand why they do the things they do, and people who are critical and look at them awkwardly, they will feel a sense of shame towards their new role. (Scheff 2006: 18). It is shown how relatives respond differently to their new role. Some relatives feel more shame than others, and they react differently to the shame. Some choose to attack others in an attempt to reduce the shame as for example municipal employees or family members, while others simply attack and scold themselves for their decisions forced by the new role.
In addition to being the object of the anger of the relatives, the thesis also points to how the municipality plays a direct role in creating the shame of the relatives. This happens, among other things, when relatives see their demented family member being let down in their own home or nursing home. This affects the legitimacy of the relatives in their decision to seek help from the municipality. This results in conflicts with the municipality's employees, specifically the healthcare staff.
It has been shown that there may be problems in the family of the demented, and that a single person ends up taking care of everything involving the demented. While the other members of the family do not understand the seriousness, or perhaps avoid it directly, the next of kin who is taking the responsibility suddenly becomes the one who has to make all the negative and difficult decisions. It can also lead to conflicts in the family when, for example, a family member does not understand that it is now time to apply for a nursing home. The lack of understanding leads to a lack of regard towards the caregiver which, according to Scheff, feels ashamed of themselves. (Scheff 2006: 18).

However, the relatives may find comfort in other relatives. Through the thesis, it is shown how to perceive others in kin groups, and at relative courses as sympathetic others, who share their stigma. With them, they can be accepted for who they are and what they do (Goffman 1963: 31-32).

Therefore, since the purpose of this thesis has been to investigate how relatives experience and manage their relationship with their demented family member, it must be concluded that the relatives, with whom this thesis has been in contact, perceive their relationship with the demented as stigmatizing. This stigma leads to shame in relationships with others around the demented who do not take on the role of caregiver. Many find it difficult to handle this role, but meeting with other caregivers in kin groups can who can help them with how they can function and overcome their shame. In addition, the collected empirical data indicates that there are several challenges regarding cooperation with the municipality and other institutions.

The thesis is about the relatives who participated in activities in and around “Aktiv med demens”, which also affects the conclusion. Further work points to trying to access the relatives who stays away from the activity center. Here it could be investigated whether it is because of a presumption of stigma, they avoid the negative role, whether it is random or something completely different.
The thesis also provides for a deeper interview study where more informants could be interviewed to gain access to more emotions and perspectives.
Furthermore, a theme can be further worked around the municipality. When and why does it go wrong? Does it always going wrong, and what can possibly be done to ease both the municipality and avoid the conflicts mentioned above? Furthermore, better collaboration will also help the relative’s experience the of the process.
Publication date3 Sept 2019
Number of pages51
ID: 310236635