Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature

Dementia ◽  
2020 ◽  
Vol 19 (2) ◽  
pp. 148-181 ◽  
Author(s):  
Trang Nguyen ◽  
Xiaoming Li
Keyword(s):  
Systematic Review ◽  
Family Caregivers ◽  
General Public ◽  
Help Seeking ◽  
Public Perception ◽  
Sociodemographic Factors ◽  
Public Stigma ◽  
Media Campaigns ◽  
People With Dementia ◽  
Prejudice And Discrimination

Stigma negatively impact quality of life of people with dementia and their family members. Yet the literature in stigma and dementia remains scant. This article systematically reviews manifestations of and associated factors with public-stigma and self-stigma in the context of dementia. After searching and screening on the three major databases of PubMed, Embase, and psycINFO, 26 articles, including 17 quantitative papers and nine qualitative papers, were selected for synthesis. Results show consistently limited knowledge, as well as stereotype, prejudice, and discrimination of public toward people with dementia and their family caregivers. Demographic characteristics of general public were found to be associated with the level of their stigma against dementia. People with dementia and their family caregivers also perceived negative stereotype, prejudice, and discrimination from general public and healthcare professionals. They reported negative feelings of themselves and tended to delay help-seeking. Psychological factors rather than sociodemographic factors shaped self-stigma of people with dementia and their families. This systematic review highlights the need of future studies in both public-stigma and self-stigma in dementia research in different contexts and cultures, as well as the development of evidence-based and culturally competent interventions and mass media campaigns to reconstruct public perception of dementia.

scholarly journals What is good communication for people living with dementia? A mixed-methods systematic review

2017 ◽  
Vol 29 (11) ◽  
pp. 1785-1800 ◽  
Author(s):  
Sarah Alsawy ◽  
Warren Mansell ◽  
Phil McEvoy ◽  
Sara Tai
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Family Caregivers ◽  
Interpersonal Relationships ◽  
Healthcare Professionals ◽  
Eligibility Criteria ◽  
Good Communication ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

ABSTRACTBackground:Many strategies have been recommended to support caregivers in communicating with people who live with dementia. However, less is known about what makes communication a good and meaningful experience from the perspective of people with dementia. Understanding this may enhance the person with dementia's sense of connectedness, strengthen their relationships, and facilitate person-centered care. The current review aimed to evaluate research that examined experiences of communication in people living with dementia. Studies that examined reports provided by people with dementia, healthcare professionals, and family caregivers were included.Methods:A mixed-methods systematic review was conducted using PsychINFO, MEDLINE, and EMBASE databases.Results:After applying the eligibility criteria, 15 studies were included. Although eight of these recruited people with dementia, only one focused on their perspectives of communication experiences and the remaining studies focused on the perspectives of family caregivers and healthcare professionals. These studies either explored experiences without suggestions of communication methods, “open exploration,” or through examining experiences of strategies, “exploration of strategies.” A significant theme was around communication difficulties that affected interpersonal relationships and activities of daily living. Conversely, personhood strategies and a strong underlying relationship were believed to facilitate communication. The one study that examined the perspectives of people with dementia emphasized the importance of retaining valued relationships and feeling respected during communication.Conclusions:The need to involve people with dementia in research, particularly around their experiences of communication, is evident. Such research would be imperative for facilitating person-centered care, strengthening social relationships, and informing training programs.

Mindfulness-Based Intervention for Stress Reduction of Family Caregivers of People with Dementia: A Systematic Review and Meta-Analysis

Mindfulness ◽  
2017 ◽  
Vol 9 (1) ◽  
pp. 7-22 ◽  
Author(s):  
Patrick P. K. Kor ◽  
Wai Tong Chien ◽  
Justina Y. W. Liu ◽  
Claudia K. Y. Lai
Keyword(s):  
Systematic Review ◽  
Family Caregivers ◽  
Stress Reduction ◽  
Meta Analysis ◽  
People With Dementia

scholarly journals Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review

2017 ◽  
Vol 29 (8) ◽  
pp. 1281-1296 ◽  
Author(s):  
Jacki Stansfeld ◽  
Charlotte R. Stoner ◽  
Jennifer Wenborn ◽  
Myrra Vernooij-Dassen ◽  
Esme Moniz-Cook ◽  
...  
Keyword(s):  
Systematic Review ◽  
Positive Psychology ◽  
Quality Assessment ◽  
Psychometric Properties ◽  
Family Caregivers ◽  
Outcome Measures ◽  
Well Being ◽  
Positive Outcome ◽  
Future Research ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice.Method:A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties.Results:Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory.Conclusions:There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

scholarly journals Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia

2020 ◽  
Vol 32 (5) ◽  
pp. 611-634 ◽  
Author(s):  
Michelle Parker ◽  
Sally Barlow ◽  
Juanita Hoe ◽  
Leanne Aitken
Keyword(s):  
Systematic Review ◽  
Help Seeking ◽  
Barriers And Facilitators ◽  
Qualitative Synthesis ◽  
Dementia Diagnosis ◽  
Network Support ◽  
Informal Network ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Protocol Registration

ABSTRACTObjective:To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.Design:A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used.Results:From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network.Conclusions:Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers.

scholarly journals Association between mental health-related stigma and active help-seeking: Systematic review and meta-analysis

2017 ◽  
Vol 210 (4) ◽  
pp. 261-268 ◽  
Author(s):  
Nina Schnyder ◽  
Radoslaw Panczak ◽  
Nicola Groth ◽  
Frauke Schultze-Lutter
Keyword(s):  
Mental Health ◽  
Systematic Review ◽  
Mental Illness ◽  
Mental Disorders ◽  
Help Seeking ◽  
Random Effect ◽  
Public Stigma ◽  
Related Stigma ◽  
Personal Attitudes ◽  
The Impact

BackgroundMental disorders create high individual and societal costs and burden, partly because help-seeking is often delayed or completely avoided. Stigma related to mental disorders or mental health services is regarded as a main reason for insufficient help-seeking.AimsTo estimate the impact of four stigma types (help-seeking attitudes and personal, self and perceived public stigma) on active help-seeking in the general population.MethodA systematic review of three electronic databases was followed by random effect meta-analyses according to the stigma types.ResultsTwenty-seven studies fulfilled eligibility criteria. Participants' own negative attitudes towards mental health help-seeking (OR = 0.80, 95% CI 0.73–0.88) and their stigmatising attitudes towards people with a mental illness (OR = 0.82, 95% CI 0.69–0.98) were associated with less active help-seeking. Self-stigma showed insignificant association (OR = 0.88, 95% CI 0.76–1.03), whereas perceived public stigma was not associated.ConclusionsPersonal attitudes towards mental illness or help-seeking are associated with active help-seeking for mental problems. Campaigns promoting help-seeking and fighting mental illness-related stigma should target these personal attitudes rather than broad public opinion.

scholarly journals Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

2021 ◽  
pp. 026921632110667
Author(s):  
Silvia Gonella ◽  
Gary Mitchell ◽  
Laura Bavelaar ◽  
Alessio Conti ◽  
Mariangela Vanalli ◽  
...  
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Nursing Homes ◽  
End Of Life ◽  
Family Caregivers ◽  
Cultural Context ◽  
Integrated Approach ◽  
Advanced Dementia ◽  
People With Dementia ◽  
Support Family

Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.

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