Abstract
ObjectiveTo determine the impact of the affiliate stigma on mental well-being of relatives caring for a person with dementia.DesignThe study was conducted in a cross sectional design.SettingThe study was conducted in a public setting, addressing relatives caring for a person with dementia.ParticipantsParticipants were relatives of patients with a formal diagnosis of dementia. Relatives were defined as caring or living closely to a patient. Participants were recruited with the help of care and welfare organizations.Outcome MeasuresThe main outcome measure was the impact of the affiliate stigma on mental well-being of caring relatives.Results228 participants fully completed the survey. Women, relatives with a higher education and partners experienced more impact of the affiliate stigma on mental well-being than man, relatives with a lower education and relatives with another relationship to the person with dementia (resp. F-ratio = 15.67; p = 0.0001; F-ratio = 2.5865; p = 0.0381; F-ratio = 3.1131; p = 0.0099). The duration of dementia and the age of the caregiver had a clear significant effect on affiliate stigma (F-ratio = 4.9104; p = 0.0083) (F-ratio = 6.5515, p = 0.0112).ConclusionThis study revealed that caregiver related features are predicting the presence of an affiliate stigma. Interventions to prevent or reduce the impact of this stigma might focus on these groups. Education about dementia and the impact on patients, relatives and the broader social context might alter the affiliate stigma surrounding dementia.
Highlights
Dementia is the collective name given to a group of symptoms that indicates a significant decline in a person’s level of cognitive functioning
This study examined the relationship between the affiliate stigma experienced by relatives of persons with dementia and the impact on their mental health well-being
This study shows that the impact of the affiliate stigma on mental well-being is higher in female relatives, which is in line with the findings in previous research (Kahn et al, 2016)
Summary
Dementia is the collective name given to a group of symptoms that indicates a significant decline in a person’s level of cognitive functioning. In addition to the decline in cognitive functioning, persons with dementia experience a significant loss in social, occupational and/or domestic functioning This makes them dependent on persons in their environment to carry out daily activities. The assumptions made in our society about persons with dementia are often based on stereotypes This stereotypical presentation is influenced by the later stages of the syndrome, where the person with dementia is fully care dependent (Van Gorp and Vercruysse, 2012). The result of these negative assumptions is that selfstigmatization occurs in both persons with dementia and their relatives, which can cause them feeling insecure in their dealing with the person with dementia (Greenwood et al, 2018; Jeong et al, 2020; Rewerska-Jusko and Rejdak, 2020). The affiliation stigma appears relatively independently of the type of dementia and seems rather related to other features and characteristics of patients, caregivers and community (Greenwood et al, 2018; Rewerska-Jusko and Rejdak, 2020)
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