Perceived stigma in persons with early-stage dementia: Longitudinal findings: Part 1

Burgener, Sandy C.; Buckwalter, Kathleen; Perkhounkova, Yelena; Liu, Megan F.; Riley, Rebecca J.; Einhorn, Carol J; Fitzsimmons, Suzanne; Hahn-Swanson, Carolyn

doi:10.1177/1471301213508399

Cited by 56 publications

(64 citation statements)

References 49 publications

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“…A diagnosis of dementia can supersede all other aspects of one's identity (Milne, 2010) and people with dementia often feel that they are treated with less respect once a diagnosis is acknowledged Burgener, Buckwalter, Perkhounkova, Liu, Riley, et al, 2015;Mitchell et al, 2013). In short, stigma labels people with dementia by their diagnosis with negative stereotypes of a loss of self and capabilities (Behuniak, 2011) and a tendency to feel 'less than' (Swaffer, 2014).…”

Section: Introductionmentioning

confidence: 97%

Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

et al. 2016

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Recently, there has been increasing attention given to finding ways to help people diagnosed with dementia 'live well' with their condition. Frequently however, the attention has been placed on the family care partner as the foundation for creating a context that supports the person with dementia to live well. A recent participatory action research (PAR) study highlighted the importance of beginning to challenge some of the assumptions around how best to include family, especially within a context of supporting citizenship. Three advisory groups consisting of 20 people with dementia, 13 care partners, and three service providers, were set up in three locations across Canada to help develop a self-management program for people with dementia. The hubs met monthly for up to two years. One of the topics that emerged as extremely important to consider in the structuring of the program revolved around whether or not these groups should be segregated to include only people with dementia. A thematic analysis of these ongoing discussions coalesced around four inter-related themes: creating safe spaces; maintaining voice and being heard; managing the balancing act; and the importance of solidarity Underpinning these discussions was the fifth theme, recognition that 'one size doesn't fit all'. Overall an important finding was that the presence of family care-partners could have unintended consequences in relation to creating the space for active citizenship to occur in small groups of people with dementia although it could also offer some opportunities. The involvement of care partners in groups with people with dementia is clearly one that is complex without an obvious answer and dependent on a variety of factors to inform a solution, which can and should be questioned and revisited.

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Section: Introductionmentioning

confidence: 97%

Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

et al. 2016

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“…Based on this theory, the mechanisms of perceived stigma were conceptualized by Fife and Wright [26] to include four dimensions: social rejection (e.g., friends, family, colleagues abandoning PwD), financial insecurity (e.g., financial impact of stigma), internalized shame (e.g., feelings of embarrassment about PwD's diagnosis), and social isolation (e.g., limiting social contact due to abandonment, fear of PwD's cognitive deficits being obvious). Support for these four dimensions of perceived stigma was found through testing the relationships of stigma and a variety of demographic variables on persons with HIV/AIDS, cancer, Alzheimer's dementia, and Parkinson's disease [11][12][13][14][15][16][17][18][19][20][21][22][23][24][25][26][27]. Variables that may lead to stigmatizing responses of others and perceived stigma in caregivers of PwD include personal and environmental factors such as: gender, living situation, disease stage, mental ability, setting (e.g.…”

Section: Theoretical Frameworkmentioning

confidence: 99%

“…Variables that may lead to stigmatizing responses of others and perceived stigma in caregivers of PwD include personal and environmental factors such as: gender, living situation, disease stage, mental ability, setting (e.g. urban or rural), ethnic background, and caregiver knowledge of Alzheimer's disease [27].…”

Section: Theoretical Frameworkmentioning

confidence: 99%

Perceived Stigma in Caregivers of Persons with Dementia and its Impact on Depressive Symptoms

Liu¹

2014

J Depress Anxiety

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Objective: To examine the relationship between perceived stigma and depressive symptoms among caregivers of persons with dementia (PwD). Methods:A descriptive longitudinal study of 51 caregivers of persons with dementia and 47 PwD, recruited from memory disorders and diagnostic centers and the VA Healthcare system. Modified Labeling Theory served as the organizing framework. Data were collected at baseline, 6, 12 and 18 months to assess changes in perceived stigma and depressive symptoms over the early-mid disease stages as part of a multisite study. Caregivers provided information on ethnic background, geographic location (rural/urban), knowledge of dementia, perceived stigma, depressive symptoms, and the PwD's behavioral symptoms and their reactions to the behaviors. PwD were assessed on their mental ability and disease stage. Inclusion criteria for PwD included a physician-confirmed dementia diagnosis within the last 12-18 months, a Mini Mental State Examination score >15 (to target early-mid disease stage participants), and residence in the community or assisted living facility. Caregivers were non-paid primary caregivers who had ≥ 3 contacts weekly with the PwD, and were ≥21 years old. A linear mixed model analysis was used to determine the relationship between variables, and to examine missing data. Results:Caregivers' perceptions of stigma were significantly associated with depressive symptoms both at baseline (r=0.36, p=0.017) and over 18 months (p=0.004). Results also indicated that caregivers of PwD felt more depressed when they perceived more stigma (p=0.016), despite differences in ethnicity/race, geographic location as well as different levels of cognitive impairment of the person with dementia, and caregiver reactions in response to PwD memory and behavior problems. We also found that perceived stigma minimally mediated the effect between caregivers' reaction toward PwD's memory and behavior problems and depressive symptoms (13.7% decrease in the coefficient). Conclusions:Caregivers of persons with dementia felt more depressed when they perceived more stigma after adjusting for other covariates in the model. Perceived stigma minimally mediated the effect between caregivers' reactions toward the PwD's memory and behavior symptoms and depressive symptoms. Results underscore the effects of stigma in relation to caregiver depressive symptoms. Effective interventions to combat caregiver perceived stigma are needed to enhance caregiver psychological well-being and to increase positive responses to PwD behaviors.

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“…A small number of primarily qualitative studies highlight the importance of culturally specific meanings attached to dementia and its relation with ageing (Hinton et al 2000). Despite the continuing efforts of patients' organisations, a significant stigma remains associated with Alzheimer's dementia, particularly in early disease stages (Burgener et al 2015;Johnson et al 2015). This may be particularly the case in some ethnic minority and older populations potentially making research participation less likely (Feldman et al 2008;Hinton et al 2000).…”

Section: Motivations and Barriers To Participationmentioning

confidence: 99%

Strategies to improve recruitment of people with dementia to research studies

2018

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(274 words)Background Low participation in research is one of the key challenges to advancing understanding of dementia, and improving the care and treatment of those who live with this condition. Nurses and nurse researchers play a vital role in recruiting people with dementia to studies, as several countries including the United States and the United Kingdom set national targets and develop initiatives to encourage more people with dementia to take part in research.Aim To highlight the challenges to recruiting people with dementia to studies, and to identify strategies that nurses, and in particular, nurse researchers can use for overcoming them. Our focus is primarily on the role of nurses in recruiting people with dementia to dementia studies, but much of the discussion will apply to other health professionals involved in the recruitment of people with dementia to research more generally.Discussion Challenges discussed include a lack of awareness about research participation opportunities and a suitable study partner. We discuss how the nurses' role is to ensure that recruitment practices are personalised and responsive to participants' needs and situation, rather than target-driven. The notion of responsible research is used to anchor the discussion. ConclusionIncreasing the participation of people with dementia in research is a global priority. Nurses and nurse researchers play an important role in ensuring that people who take part in research have an optimal research experience. Implications for practiceRecruiting people with dementia to research studies is a national priority in many countries.With a greater understanding of the challenges involved and strategies that can be used to overcome them, nurses can have an effective role in the recruitment process and research experience.

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Perceived stigma in persons with early-stage dementia: Longitudinal findings: Part 1

Cited by 56 publications

References 49 publications

Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

Creating space for citizenship: The impact of group structure on validating the voices of people with dementia

Perceived Stigma in Caregivers of Persons with Dementia and its Impact on Depressive Symptoms

Strategies to improve recruitment of people with dementia to research studies

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