Family caregivers’ and professionals’ stigmatic experiences with persons with early‐onset dementia: a qualitative study

Abstract

Objectives Recently, research has focused on understanding the needs of persons with early‐onset dementia and their family caregivers who often experience stigmatic beliefs. However, to date, research has not provided a thorough and deep understanding of the stigma formation process and its implications for this population. Thus, the aim of the present study was to explore the stigma formation process as experienced by family members as informal caregivers of persons with early‐onset dementia, and professionals as formal caregivers who are involved in the development, management and provision of services. Method We conducted three focus groups with 16 participants, including spouses of a person with early‐onset dementia and professionals. The focus groups’ transcripts were analysed following a thematic analysis procedure. Results Results indicated that both family members and professionals encounter stigmatic experiences because of their association with younger persons with dementia. Lack of knowledge emerged as the main antecedent and emotional burden as the main consequence of stigma. Conclusion Stigmatic experiences emerged as a pervasive and complex phenomenon among formal and informal caregivers of persons with early‐onset dementia, suggesting the need to developing a comprehensive and integrated approach to reduce them at the individual, professional and societal levels.

The influence of the age of dementia onset on college students’ stigmatic attributions towards a person with dementia

“…Notwithstanding these limitations, this study has important implications. First, it supports recent findings [10] showing that the use of an expanded model of Attribution Theory provides an adequate conceptual framework for understanding dementia stigma. Second, the differences found in the stigmatic beliefs attributed to a younger or an older person with AD point to the theoretical and practical importance of clearly stating the age of the target person in stigma studies and in anti-stigma campaigns in the area of AD.…”

“…First, although sharing the same neuropathological characteristics, both types of dementia differ in several features such as the rate of progression of the disease, genetic characteristic, and the presentation of behavioral problems [6]. Second, an extensive body of research has demonstrated that sigmatic experiences are common in the lives of persons with YOD, as well as among those surrounding them, such as family and professional caregivers [7][8][9][10]. Finally, since the internalization of stigma is closely associated to the stigmatic beliefs held by the public [11][12][13], evaluating public stigma towards younger persons with the disease i.e., with young-onset dementia -is of the utmost importance.…”

Depression, everyday technology use and life satisfaction in older adults with cognitive impairments: a cross‐sectional exploratory study

“…Future research should also explore the potential impact of age-friendly or dementia-friendly environments in the context of community-based ET use on individuals' life satisfaction. These aim at reducing the social stigma surrounding dementia and empowering persons living with dementia (67). Accordingly, older adults with incipient cognitive decline can be empowered to stay engaged in meaningful community-based activities.…”

Family carers’ narratives of the financial consequences of young onset dementia

“…Services and supports tend to be geared toward older adults and are perceived by people with young onset dementia and carers as inappropriate for younger persons ( Green & Kleissen, 2013 ). Perceived inappropriateness of services may lead to their underuse, as well as a sense of isolation for persons with young onset dementia ( Clemerson et al, 2014 ) and perceived discrimination by carers ( Werner et al, 2020 ). Carers of persons with young onset dementia report numerous unmet skill-based, educational, and support needs ( Bakker et al, 2014 ; Ducharme et al, 2014 ; Green & Kleissen, 2013 ) and dissatisfaction with the amount and quality of formal supports ( Millenaar et al, 2018 ).…”

“…The financial impacts of this may be significant as some individuals with young onset dementia are at the height of their career and have financial obligations such as mortgages or children’s educational expenses ( Harris, 2004 ; Roach et al, 2008 ). Moreover, spouses often reduce employment to fulfill a caregiving role ( Flynn & Mulcahy, 2013 ; Kimura et al, 2015 ; Roach et al, 2008 ; Werner et al, 2020 ), or begin working for the first time in low-paid jobs to provide needed income ( Allen et al, 2009 ). Need for the carer to maintain employment is a source of significant stress, and spouses who remain working and have children at home may experience the greatest difficulties ( Ducharme et al, 2013 ; Roach et al, 2016 ).…”