Within My Walls, I Escape Being Underestimated: A Systematic Review and Thematic Synthesis of Stigma and Help-Seeking in Dementia
Abstract
:1. Introduction
- To analyze the impact of stigma on the help-seeking attitudes and behaviors of people with dementia.
- To identify the factors that influence the relationship between stigma and help-seeking behavior.
2. Materials and Methods
2.1. Search Strategy
2.2. Inclusion and Exclusion Criteria
2.3. Quality Appraisal
2.4. Data Extraction and Synthesis
3. Results
3.1. Study Selection
3.1.1. Risk of Bias in Studies
3.1.2. Study Characteristics
3.2. Thematic Synthesis
3.2.1. Impact of Stigma on Help-Seeking
From Public Perception to Internalization or Rejection of Stigmatizing Beliefs
How Family and Community Shape the Experience of Seeking-Help of People with Dementia
Professional Attitudes and Eligibility Processes in Dementia Services
Stigma Stems from Lack of Awareness and Knowledge of Dementia
3.2.2. Factors That Influence the Relationship Between Stigma and Help-Seeking Attitudes and Behaviors
The Impact of Psychological Decline, Isolation, and Loss of Autonomy on Help-Seeking Behaviors
A Gap in Accessible and Supportive Services
Caregiver Support, Professional Relationships, and Peer Support Along Help-Seeking Path
What Government Can Do to Tackle Dementia and to Promote Help-Seeking
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Data Availability Statement
Conflicts of Interest
References
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Search terms corresponding to ‘exposure’ included ‘stigma’, ‘stigmatization’, ‘self-stigma’, ‘internalized stigma’, ‘subjective stigma’, ‘public-stigma’, ‘social stigma’, and ‘societal stigma’, as well as terms related to help-seeking attitudes and behaviors, respectively, ‘help-seeking’, ‘treatment-seeking’, ‘care-seeking’, ‘healthcare utilization’, ‘seeking assistance’, ‘seeking support’, ‘seeking help’, ‘utilization of services’, and ‘barrier’. The basic search string based on Boolean operators was applied into each database as follow: [Dementia OR “Alzheimer’s disease” OR “Neurocognitive disorder” OR “Neurodegenerative disease”] AND [Stigma OR Stigmatization OR Self-stigma OR “Internalized stigma” OR “Subjective stigma” OR Public-stigma OR “Social stigma” OR “Societal stigma”] AND [Help-seeking OR Treatment-seeking OR Care-seeking OR “Healthcare utilization” OR “Seeking assistance” OR “Seeking support” OR “Seeking help” OR “Utilization of services” OR Barrier*]. |
Section A: Are the Results Valid? | Section B: What Are the Results? | Section C: Will the Results Help Locally? | ||||||||
---|---|---|---|---|---|---|---|---|---|---|
1. Was there a clear statement of the aims of the research? | 2. Is a qualitative methodology appropriate? | 3. Was the research design appropriate to address the aims of the research? | 4. Was the recruitment strategy appropriate to the aims of the research? | 5. Was the data collected in a way that addressed the research issue? | 6. Has the relationship between researcher and participants been adequately considered? | 7. Have the ethical issues been taken into consideration? | 8. Was the data analysis sufficiently rigorous? | 9. Is there a clear statement of findings? | 10. How valuable is the research? | |
(Biswas et al., 2022) | Yes | Yes | Yes | Yes | Yes | Cannot tell | Cannot tell | Yes | Yes | Yes |
(Carter et al., 2024) | Yes | Yes | Yes | Cannot tell | Yes | Yes | Yes | Yes | Cannot tell | Yes |
(Cheung et al., 2022) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
(Dooley et al., 2025) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
(Farhana et al., 2023) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
(Garrett et al., 2024) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
(Hurzuk et al., 2022) | Yes | Yes | Yes | Yes | Yes | Yes | Cannot tell | Yes | Yes | Yes |
(Lian et al., 2017) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
(Martin et al., 2013) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
(Mitchell et al., 2020) | Yes | Yes | Yes | Cannot tell | Yes | Yes | Yes | Yes | Yes | Yes |
(Molvik et al., 2024) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
(Pavković et al., 2025) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
(Strier and Werner, 2015) | Yes | Yes | Yes | Cannot tell | Yes | Cannot tell | Cannot tell | Yes | Yes | Yes |
(Toms et al., 2015) | Yes | Yes | Yes | Yes | Yes | Yes | Cannot tell | Yes | Yes | Yes |
(Walker et al., 2023) | Yes | Yes | Yes | Cannot tell | Yes | Yes | Cannot tell | Yes | Yes | Yes |
(Willis et al., 2020) | Yes | Yes | Yes | Yes | Yes | Yes | Cannot tell | Yes | Yes | Yes |
(Zhang et al., 2020) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
Authors (Year) and Country | Aim | Study Design and Methodology | Sample | Key Results |
---|---|---|---|---|
Biswas et al. (2022) Canada | To address the factors that influence equitable access to and social participation in dementia care and support programs among foreign-born individuals including recent and non-recent immigrants and refugees | Qualitative—Interviews | Seven participants: two people with dementia, three caregivers, and two healthcare professionals |
|
Carter et al. (2024) United Kingdom | To explore how experiences of immigration and effects of globalization on family life and traditional kinships might explain delayed diagnosis and engagement with and by health services | Qualitative—Semi-structured interviews | A total of 61 participants: 10 people with dementia; 30 family members; 16 healthcare professionals; 2 interpreters; and 3 paid carers |
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Cheung et al. (2022) New Zealand | To explore their understanding of dementia and experiences of living with dementia | Qualitative—Semi-structured interviews | A total of 16 participants: 5 dyads of people with dementia and a family member, 6 people with dementia, and 5 family members of people with dementia |
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Dooley et al. (2025) United Kingdom | (1) To find out about the experiences of current post-diagnosis support from people living with dementia (2) To explore ideas and suggestions of people living with dementia to improve post-diagnosis support | Qualitative—Focus groups | A total of 28 participants: 18 people with dementia and 10 spouses who were there to provide support |
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Farhana et al. (2023) United States | To discuss how the social construction of dementia shapes the health and social care interactions and experiences of people living with an AD/ADRD and their caregivers | Qualitative—Interviews | A total of 11 participants: 3 people with dementia and 8 caregivers |
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Garrett et al. (2024) Australia | To increase the knowledge of the needs of people living with dementia and those who provide informal or formal support to someone living with dementia in the Gippsland region | Qualitative—Interviews | A total of 26 participants: 25 people with dementia and 1 dyad |
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Hurzuk et al. (2022) India | To understand attitudes and perceptions concerning people living with dementia residing in India from two diverse metropolitan cities, Delhi and Chennai | Qualitative—focus group discussions and individual interviews | A total of 58 participants: 15 from the public, 16 healthcare practitioners, 19 dementia carers, and 8 people with dementia |
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Lian et al. (2017) China | To understand the experiences of people with dementia and their caregivers in engaging in dementia diagnosis | Qualitative—focus group discussions and individual interviews | A total of 18 people with dementia |
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Martin et al. (2013) United Kingdom | To explore barriers to self-management among people living with dementia | Qualitative—Interviews | A total of 11 participants: 7 people with dementia, 2 family members, and 2 charity representatives |
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Mitchell et al. (2020) Northern Ireland | To explore current public perceptions of living well with dementia from the perspective of people with dementia | Qualitative—Focus group | A total of 20 people with dementia |
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Molvik et al. (2024) Norway | To explore the experience of living with cognitive impairment compatible with a possible dementia and the impact of being diagnosed with dementia | Qualitative—Semi-structured interviews | A total of 15 participants: 6 people with dementia, and 9 with cognitive impairment compatible with possible dementia (not diagnosed with dementia) |
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Pavković et al. (2025) Australia | What support was offered to people with dementia and their carers in Australian memory clinics in the year following the diagnosis? 2) What do people with dementia and carers think are the barriers and facilitators to accessing and utilizing post-diagnostic services? 3) What do people with dementia and carers think should be the ideal post-diagnostic support offered by memory clinics in the first year following diagnosis? | Qualitative—Semi-structured interviews | A total of 30 participants: 10 people with dementia; 13 caregivers of people with dementia; 3 people with young-onset dementia; and 4 caregivers of people with young-onset dementia |
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Strier and Werner (2015) Israel | To investigate the existence of identity and treatment stigma and if so, how stigmatic views influence on the presence of welfare stigma | Qualitative—Interviews and focus groups | A total of 50 participants: 10 people with dementia, 25 relatives, and 15 professionals |
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Toms et al. (2015) North Wales, United Kingdom | (1) To explore the attitudes toward self-management held by people with early-stage dementia and their family caregivers; (2) to examine their views and perceptions of self-management and explored factors that could make self-management difficult | Qualitative—Semi-structured interviews | A total of 24 participants: 13 people with dementia, and 11 caregivers |
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Walker et al. (2023) Tanzania | To understand people with dementia and their caregivers’ experiences, identify challenges of living with dementia in Tanzania, and explore perceived support needs | Qualitative—Semi-structured interviews | A total of 26 participants: 14 people with dementia (2 of them were interviewed with their caregivers to support communication), and 12 caregivers |
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Willis et al. (2020) Pakistan | To explore respondents’ experiences with help-seeking, understandings of dementia, experiences with stigma, and the role of religion | Qualitative—Semi-structured interviews | A total of 20 people with dementia |
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Zhang et al. (2020) China | To understand what challenges and tensions people with dementia and their family caregivers are facing in the context of dementia care services | Qualitative—Interviews | A total of 24 participants: 14 caregivers, and 10 people with dementia (2 participants were a care dyad) |
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Brigiano, M.; Calabrese, L.; Chirico, I.; Trolese, S.; Quartarone, M.; Forte, L.; Annini, A.; Murri, M.B.; Chattat, R. Within My Walls, I Escape Being Underestimated: A Systematic Review and Thematic Synthesis of Stigma and Help-Seeking in Dementia. Behav. Sci. 2025, 15, 774. https://doi.org/10.3390/bs15060774
Brigiano M, Calabrese L, Chirico I, Trolese S, Quartarone M, Forte L, Annini A, Murri MB, Chattat R. Within My Walls, I Escape Being Underestimated: A Systematic Review and Thematic Synthesis of Stigma and Help-Seeking in Dementia. Behavioral Sciences. 2025; 15(6):774. https://doi.org/10.3390/bs15060774
Chicago/Turabian StyleBrigiano, Marco, Lara Calabrese, Ilaria Chirico, Sara Trolese, Martina Quartarone, Ludovica Forte, Alice Annini, Martino Belvederi Murri, and Rabih Chattat. 2025. "Within My Walls, I Escape Being Underestimated: A Systematic Review and Thematic Synthesis of Stigma and Help-Seeking in Dementia" Behavioral Sciences 15, no. 6: 774. https://doi.org/10.3390/bs15060774
APA StyleBrigiano, M., Calabrese, L., Chirico, I., Trolese, S., Quartarone, M., Forte, L., Annini, A., Murri, M. B., & Chattat, R. (2025). Within My Walls, I Escape Being Underestimated: A Systematic Review and Thematic Synthesis of Stigma and Help-Seeking in Dementia. Behavioral Sciences, 15(6), 774. https://doi.org/10.3390/bs15060774