Article

Dementia stigma reduction (DESeRvE) through education and virtual contact in the general public: A multi-arm factorial randomised controlled trial

January 2021
Dementia 20(1):147130122098737

DOI:10.1177/1471301220987374

Authors:

Sarang Kim

Australian Institute of Health and Welfare

Alice Richardson

Australian National University

Kaarin J. Anstey

UNSW Sydney

Objective To examine the efficacy of the Dementia Stigma Reduction (DESeRvE) programme, aimed at reducing the general public dementia-related stigma utilising ‘education’ and ‘contact’ approaches. Methods A total of 1024 Australians aged between 40 and 87 years (M = 60.8, SD = 10.1) participated in a factorial randomised controlled trial. This trial examined four conditions: online education programme (ED), contact through simulated contact with people with dementia and carers (CT), education and contact (ED+CT) and active control. Cognitive, emotional and behavioural aspects of dementia-related stigma were measured with a modified Attribution Questionnaire, and dementia knowledge was measured with the Dementia Knowledge Assessment Scale at the baseline, immediately and 12 weeks after the completion of the intervention. Results All four groups improved (reduction in scores) significantly from baseline to week 12 in dementia-related stigma, and the effects were stronger for those with higher baseline stigma scores. Intervention groups also improved significantly from baseline in dementia knowledge. Especially, the ED (β = .85, SE = .07; p < .001) and ED+CT (β = .78, SE = .08; p < .001) groups at immediate follow-up and CT (β = .21, SE = .09; p < .05) and ED+CT (β = .32, SE = .09; p < .001) at 12-week follow-up showed significant effects. Conclusions Findings suggest that DESeRvE can be a valuable tool to enhance public’s dementia knowledge and reduce dementia-related stigma, especially for those with higher levels of stigma. Reduction in stigma, however, may take a longer time to achieve, whereas improvement in dementia knowledge is instant.

How to Encourage the Public to Help People With Dementia in the Community: A Scoping Review

Article

Full-text available

Dec 2024
J ADV NURS

Background In a response to the lack of public awareness of dementia, ‘ageing in place’ and ‘dementia‐friendly community’ policies have been proposed, and a number of relevant studies have been carried out. Aim To map the evidence of public help for people with dementia in the community. Design A scoping review. Methods A comprehensive search of nine databases was conducted to find studies from the inception of the databases to January 2024. We developed our inclusion criteria to identify studies about public help for people with dementia in the community. Data from included studies were charted (purposively designed template) and narrated synthesis in relation to the study's research questions. Results Of 34 studies included, we found that difficult situations were encountered by people with dementia after developing cognitive, behavioural and psychological symptoms. We identified three types of helping behaviour, namely, formal planned, informal planned and spontaneous helping behaviour, which were influenced by general demographic characteristics, knowledge, attitudes, responsibilities and understanding. Fourteen studies proposed interventions to promote public help for people with dementia in the community, covering three categories of teaching, practical and web‐based methods. Conclusions It is necessary to develop a systematic intervention to promote public helping behaviour according to the characteristics of people with dementia and the modifiable influencing factors of helping behaviour. Patient or Public Contribution No patient or public contribution. This is a Scoping Review.

A Randomized Control Trial for ReDeSign: A Dementia-Friendly Mobile Microlearning Training for Store Workers in Japan

Article

Full-text available

Dec 2022

Background and Objectives Dementia-friendly training should be incorporated in neighborhood stores for people living with dementia to maintain engagement in social activities. However, there is a lack of evidence of dementia-friendly training in these workplaces, and existing trainings have time constraints. We developed a mobile microlearning program based on stigma theory and the bystander intervention model. This study aimed to evaluate the microlearning program’s effectiveness. Research Design and Methods Convenience store workers in Tokyo were recruited for a randomized, waiting-list, controlled trial. The intervention group completed a 50-minute online course. The primary outcome was attitude towards people living with dementia. The secondary outcomes were knowledge of dementia and helping behavior towards customers suspected of having dementia. Data were collected at baseline, after one month and four months following the randomization. Results Process evaluations confirmed satisfaction and high completion rates of the program. In total, 150 participants were included in the analysis. The intervention group showed significantly greater improvements in attitude (Hedge's g = 0.70) and knowledge (g = 0.59) after one month, compared to the control group. Helping behavior increased in the intervention group, although it did not differ significantly between the groups. All outcomes remained significantly improved after 4 months. Discussion and Implications The findings provide evidence that dementia-friendly training reduces the general public’s stigma and increases helping behavior in stores. Mitigation of time constraints through mobile microlearning is expected to contribute to dissemination and help people living with dementia maintain their social participation in the communities.

Are Knowledge and Interpersonal Contact Cures for Alzheimer’s Stigma? Data From Caregivers Offer Clues

Article

Full-text available

Jan 2025

Research on caregivers suggests interpersonal contact with persons with Alzheimer’s disease (AD) and higher disease-oriented knowledge may heighten AD stigma, though these same mechanisms are often employed in antistigma campaigns. If we better understand associations among caregiver experience, interpersonal contact, AD knowledge, and AD stigma, we can develop improved ways of reducing stigma and avoid unintended consequences. In a factorial design experiment, 2,371 participants read a vignette describing a fictional person; the vignette varied on clinical symptom stage, AD biomarker result, and treatment availability. Multivariable analyses assessed the effects of caregiver experience, interpersonal contact, and different domains of disease-oriented knowledge on modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS) outcomes. Interaction analyses tested how clinical features may modify those associations. AD caregiver experience was associated with higher reactions on six of the seven FS-ADS domains. Disease-oriented knowledge, independent of content domain, did not substantially affect those associations. However, knowledge of caregiving, treatment, and life impact were associated with lower FS-ADS scores, and knowledge about disease course and risk factors were associated with higher reactions on FS-ADS domains. Knowledge of treatment modified reactions to symptoms and treatment availability. Knowledge of disease course modified reactions to a biomarker result. AD caregiver experience and interpersonal contact did not modify associations between clinical characteristics and FS-ADS domains. Distinct associations among different domains of AD knowledge and stigma outcomes should be considered when developing antistigma campaigns. Failure to do so risks worsening rather than alleviating AD stigma.

‘I can still swing a spade’: a qualitative exploratory study of gardening groups for people with dementia

Article

Full-text available

Apr 2024

This exploratory qualitative study aimed to evidence how community-based gardening groups can be used to support the psychological, physical and social health of those living with dementia. The views of people living with dementia in the community, care partners and group leaders were sought to better understand the benefits gained from gardening groups, as well as the features of gardening groups that are cited as enabling positive outcomes. Going beyond the existing single-group studies in this area, this research aimed to identify common themes across multiple gardening groups. Semi-structured interviews were conducted with six group leaders, three people living with dementia and ten care partners from seven gardening groups, either in person or remotely. Thematic analysis of the interview transcripts highlighted broad enablers – ‘the garden setting’, ‘features of activities’ and ‘organisational components’ – that were cited as facilitating a range of positive wellbeing outcomes, creating an environment that provides ‘physical and cognitive benefits’, ‘affirmation of identity’, ‘social connection’ and ‘benefits for care partners and others’. The wide-ranging benefits and enablers cited by participants within this research support the use of gardening groups as community-based interventions to reinforce positive psychological, physical and social outcomes for people with dementia. Themes also provide a clear framework for the design, implementation and evaluation of future gardening groups.

Dementia awareness among elderly at risk for developing mild cognitive impairment: a cross sectional study at a university-based primary care clinic

Article

Full-text available

Aug 2023
BMC Geriatr

Background: The number of people living with dementia in Malaysia is expected to increase with the nation's growing elderly population and increased lifespan. The lack of public awareness of dementia is partly compounded by low personal health literacy, while scarce research on local patient awareness further impacts the execution of optimised healthcare services in Malaysia. Patients with chronic disease have an elevated risk of developing mild cognitive impairment (MCI). This study aimed to assess the level of awareness of basic knowledge on dementia among the elderly, especially those at risk of developing mild cognitive impairment and its associated factors. Methods: A total of 207 elderly patients aged 60 years and above with chronic diseases attending a university-based primary care clinic were recruited via a systematic randomised sampling method from the clinic patient attendance registry. Respondents were assessed using self-administered online questionnaires distributed via mobile devices. The questionnaire assessed awareness, i.e. ability to correctly answer a self-reported questionnaire on basic dementia knowledge; (adapted from Northern Ireland Life and Times Survey 2010), risk of MCI; (using Towards Useful Aging (TUA)-WELLNESS screening questionnaire) and help-seeking behaviour. Bivariate analysis was used to determine factors associated with dementia awareness. Results: The response rate was 77.1%, with the majority of participants were females, Chinese and had secondary school education. 39.1% of participants were categorised as high risk of developing MCI. The majority (92.8%) had low dementia awareness and had never shared their concerns regarding dementia (93.2%) nor had any discussion (87.0%) on cognitive impairment with their physicians. Three factors had an association with total dementia awareness score, i.e., younger age group, higher risk of MCI and presence of cardiovascular diseases have significantly lower awareness score (p < 0.05). Conclusion: Awareness of dementia is low among elderly patients with potentially high risk of developing MCI. Efforts to improve awareness on dementia should focus on primary care doctors engaging with at-risk elderly patients to initiate discussion regarding dementia risk while managing modifiable risk factors i.e. hypertension control, diabetes, dyslipidaemia and obesity.

Effects of clinical stage, behavioral and psychological symptoms of dementia, and living arrangement on social distance towards people with dementia

Article

Full-text available

Jan 2025
PLOS ONE

Background Dementia presents significant challenges, including social exclusion, which can be exacerbated by public stigma. This study aimed to clarify how social distances, a common measure of public stigma, towards people living with dementia and its associated factors vary with clinical stage, presence of behavioral and psychological symptoms of dementia (BPSD), and living arrangements. Methods The study involved 2,589 Japanese participants aged 40 to 90 years. They were exposed to one of four vignettes depicting an 80-year-old woman progressing from normal ageing to mild, moderate, and severe dementia: Vignette A (living with husband, without BPSD); Vignette B (living with husband, with BPSD); Vignette C (living alone, without BPSD); and Vignette D (living alone, with BPSD). Results Social distance showed no significant differences in the normal aging and mild stage of dementia across all vignettes. At the moderate stage, social distance was higher for individuals exhibiting BPSD, regardless of living arrangement. At the severe stage, the lowest social distance was observed towards individuals living with their family without BPSD, whereas the highest was towards those living alone, exhibiting BPSD. For Vignette A, possession of social capital (p<0.001) and having experience of social contact with people living with dementia (PLWD) (p = 0.001–0.007) were independently associated with lower social distance across all dementia stages. In addition, in the mild stage of dementia, high perceived social support (p = 0.005) and having knowledge about dementia (p = 0.036) were associated with lower social distance, but not in the moderate or severe stage of dementia. For Vignette D, possession of social capital (p≤0.001) and having experience of social contact with PLWD (p<0.001 to p = 0.006) were independently associated with lower social distance across all dementia stages. In mild dementia, female sex (p = 0.004) and knowledge about dementia (p = 0.026) were associated with lower social distance. Furthermore, in mild and moderate dementia, living in rural area (p = 0.003–0.048) was associated with lower social distance. Conclusions Social distance is higher toward PLWD who live alone and exhibit BPSD than toward those who live with family and/or do not show BPSD, indicating a higher risk of exclusion for the former. Moreover, factors affecting social distance towards PLWD vary across different clinical stages of dementia. While greater knowledge about dementia is associated with lower social distance toward PLWD, this effect appears to be most pronounced in the mild stage. In contrast, opportunities for social contact with PLWD are crucial for achieving lower social distance across all stages of dementia. The findings underscore the need for stage-specific interventions to address stigma, with a focus on education and opportunities for social contact. Targeted efforts are especially important for promoting the inclusion of PLWD who live alone and exhibit BPSD.

Self-Stigma of Seeking Help as a Predictor of Mental Well-Being Among Filipino College Students

Article

Full-text available

Jan 2025

The mental health of Filipino college students is a growing concern due to the challenges posed by academic pressures, social isolation, and emotional distress. Counseling interventions are crucial in addressing these challenges by equipping students with strategies that build resilience and personal agency. However, many students remain hesitant to seek professional help despite its availability due to the self-stigma associated with mental health support. This study addressed a crucial gap in the literature by exploring how stigma predicts mental health outcomes in the Filipino context, offering valuable insights for improving student well-being and academic success. The pervasiveness of mental health concerns among college students and understanding barriers to seeking professional help also present a timely context. This study used a quantitative, predictive correlational design to examine the relationship between self-stigma and mental well-being. G*Power was used to compute the sample size, and a purposive sampling technique was utilized to recruit college students (n=300) across higher education institutions in Pampanga, Philippines. The data was collected through standardized instruments, including the Self-Stigma of Seeking Help Scale and the Short Warwick-Edinburgh Mental Well-Being Scale. The findings revealed a weak and significant negative correlation (R=-0.17, p. <0.001) between self-stigma and mental well-being, indicating that higher levels of self-stigma are associated with lower levels of mental well-being. Moreover, the data revealed that 2.9% of self-stigma can predict mental well-being among college students. These findings highlighted that as college students experience higher self-stigma around seeking help, mental well-being tends to decrease, making the students less likely to seek psychological support and more vulnerable to mental health challenges. Higher educational institutions are encouraged to create an environment that fosters open discussions on mental health, making it more accepted and normalized. School counselors are encouraged to implement stigma-reduction programs to help students feel more comfortable seeking mental health support without fear of judgment.

Supports for informal caregivers of people living with dementia in the Middle East and North Africa Region: realist review

Article

Jan 2025

In the Middle East and North Africa (MENA) region, the commitment to honour parents and keep private ‘issues’ within the home combine to shape caregiving styles and needs. Evidence on the effectiveness of interventions for informal caregivers for people living with dementia in the MENA region is lacking. This study offers an overview of interventions for caregivers. It also explores informal caregivers’ needs, preferences and views on addressing intervention through online content. A middle-range programme theory is developed to provide insight into the mechanisms underpinning the interventions. A realist review approach was used to explore what intervention types and features support the informal caregivers of people living with dementia throughout the MENA region and to examine in which contexts and how these interventions worked. The realist synthesis included 23 articles and eight interviews with health professionals. Eight context–mechanism–outcome configurations (CMOCs) were extrapolated to build and iteratively refine a middle-range programme theory and finalise it for testing. Contextual conditions that emerged include stigma, long care duration, culture, lack of support and the effect of this on intervention uptake. Mechanisms reported include feeling supported and empowering caregivers with the skills, knowledge and support they need, which led to outcomes such as improved quality of life for people living with dementia and caregivers and reduction in stress for caregivers. This article contributes to the limited literature by addressing an identified gap in knowledge, providing insights into informal caregivers of people living with dementia in the MENA region to understand why particular interventions work or not, and in what contexts.

Creating dementia-friendly communities: Challenging stigma and building understanding through public education

Article

Nov 2024
EDUC GERONTOL

‘There is Something Missing Out There…’: A Performative Portrait Approach to Understanding the Experience of Living with Dementia

Article

Full-text available

Nov 2024
Illness Crisis Loss

People with dementia (PwD) often face symptoms that influence their memories and capabilities to express themselves meaningfully. These symptoms make it particularly challenging for qualitative researchers to capture and demonstrate PwD’s complex experiences with the traditional reliance on textual outputs. This paper offers a novel approach through performative portraiture to demonstrate and argue that the use of this approach is needed as an alternative academic output that diverges from textual reliance. The paper begins with an overview of the research, which aimed to improve understanding of the initiation and revision process of Advance Care Planning with and for PwD and was used as a baseline to create ‘Dave’ as a young PwD based on the verbatim interview transcripts of 13 PwD. The methodological process is outlined, and findings are then chronologically discussed. The paper concludes with the strengths and limitations of this approach as well as its future implications.

A comparison of written case notes and the delivery of care in dementia specialist mental health wards

Article

Full-text available

Aug 2024
Dementia

Introduction: Stigmatising language concerning people living with dementia can cause potentially harmful and dehumanising consequences. Language used about people living with dementia in mental health wards may focus on medical perspectives and suggest custodial relationships with patients rather than person-centred accounts of individuals. This language could have a devastating impact on the provision of person-centred care. This study investigated the relationship between accounts of people living with dementia written in healthcare case notes and clinical practice at three dementia specialist wards in Wales, UK. Language guidance was provided to ward staff to assess whether stigmatising language could be reduced and whether this influenced the provision of person-centred care. Methodology: Dementia Care Mapping was adapted to analyse case note entries for enhancing and detracting accounts of people living with dementia at three data collection points. These were compared to the results of routine DCM observations of care across the three wards. The healthcare case notes of 117 people living with dementia, encompassing 4, 522 entries over ten months were analysed. DCM observations of 38 people living with dementia within the three wards were compared against the case note results. Person-centred language guidance was shared with care staff following each data collection point. Results: Following the provision of person-centered language guidance, the use of personally enhancing language was observed to increase across all three wards. Non-person-centred case note entries predominantly focussed on Labelling language, whilst language concerning Invalidation and Objectification also occurred frequently compared to other DCM domains. Person centred language typically concerned Acknowledgement. A relationship between case note entries and practice was evident in some domains although findings were inconsistent. Discussion and Implications: The findings highlight the importance of addressing stigmatising language in healthcare and suggest that further studies to support the anti-stigma agenda in dementia care are required.

Health Promotion in Early-Stage Dementia: A Focused Ethnographic Study of a 12-Week Group-Based Educational Intervention

Article

Full-text available

Jul 2024

Introduction Educational health promotion interventions for people with early-stage dementia have shown promising results, including empowering the person with dementia to live well and cope with their condition. Objective(s) The aim of this study was to explore how group interactions, course structure, and facilitation by healthcare professionals in a 12-week educational health promotion course promote coping, healthy behaviors, and empowerment in people with early-stage dementia. Method A focused ethnographic approach was employed, collecting data through moderate participant observations of people with early-stage dementia who attended the health promotion course and field conversations with the facilitators. Additionally, before and after the participants had completed the course, the participants and their care partners were interviewed individually. Results The findings showed that group discussions provided an opportunity for the facilitators to identify knowledge gaps, correct misinterpretations of symptoms, and tailor the information to the participants’ specific needs, thereby promoting healthy behaviors and empowering the participants. The consistent and structured format of the course appeared to reduce stress and promote learning. Learning about dementia first-hand, reminiscing, using humor, receiving support from others facing similar challenges, and receiving support and validation from facilitators all contributed to participants coping with their condition, processing negative emotions, and reducing internalized stigma. Conclusion This study emphasized the importance of providing people living with early-stage dementia educational opportunities that combine first-hand information, peer and facilitator support, reminiscing, humor, recognition, and validation. These interventions can contribute to promote coping, healthy behaviors, and empowerment in people living with early-stage dementia.

Acceptability and Feasibility of a Community Dementia Stigma Reduction Program in Kenya

Article

Full-text available

Jun 2024
J ALZHEIMERS DIS

Background Dementia stigma has adverse effects on people with dementia and their carers. These effects can lead to poor quality of life among other negative impacts. Objective The aim of this study is to develop and pilot a novel dementia stigma reduction intervention in rural Kenya, leveraging existing Community Health Workers (CHWs) for its delivery. Methods The pre-post pilot study was conducted, utilizing a parallel mixed-methods design. Ten CHWs were trained to deliver a contextually developed dementia anti-stigma intervention. These CHWs delivered four workshops to 59 members of the general public in Makueni County, with each workshop lasting between 1.5 to 2 hours. Focus group discussions and pre/post surveys were used as measures. Results The intervention was well received amongst the participants, particularly in terms of its format and accessibility. We observed the largest effects in reducing negative beliefs related to treatment (η² = 0.34), living well with dementia (η² = 0.98), and care (η² = 0.56) for the general public post intervention. Improvements to attitudes were also observed in the CHWs, but the effect sizes were typically smaller. Conclusions The intervention was accessible and feasible in rural Kenya, while also showing preliminary benefits to stigma related outcomes. The findings indicate that culturally sensitive interventions can be delivered in a pragmatic and context specific manner, thus filling an important knowledge gap in addressing stigma in low-resource settings. Future research is needed to ascertain the intervention’s long-term benefits and whether it tackles important behavioral outcomes and beliefs deeply ingrained within communities.

Double-Edged Sword: A Positive Brain Scan Result Heightens Confidence in an Alzheimer’s Diagnosis But Also Leads to Higher Stigma Among Older Adults in a Vignette-Based Experiment

Article

Jun 2024
J GERONTOL B-PSYCHOL

Objectives Early diagnosis of Alzheimer’s disease (AD) using brain scans and other biomarker tests will be essential to increasing the benefits of emerging disease-modifying therapies, but AD biomarkers may have unintended negative consequences on stigma. We examined how a brain scan result affects AD diagnosis confidence and AD stigma. Methods The study used a vignette-based experiment with a 2×2×3 factorial design of main effects: a brain scan result as positive or negative, treatment availability and symptom stage. We sampled 1,283 adults ages 65 and older between 11 June and 3 July 2019. Participants (1) rated their confidence in an AD diagnosis in each of four medical evaluations that varied in number and type of diagnostic tools and (2) read a vignette about a fictional patient with varied characteristics before completing the Modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS). We examined mean diagnosis confidence by medical evaluation type. We conducted between-group comparisons of diagnosis confidence and FS-ADS scores in the positive versus negative brain scan result conditions and, in the positive condition, by symptom stage and treatment availability. Results A positive versus negative test result corresponds with higher confidence in an AD diagnosis independent of medical evaluation type (all p<0.001). A positive result correlates with stronger reactions on 6 of 7 FS-ADS domains (all p<0.001). Discussion A positive biomarker result heightens AD diagnosis confidence but also correlates with more AD stigma. Our findings inform strategies to promote early diagnosis and clinical discussions with individuals undergoing AD biomarker testing.

General practice nurse perceptions of barriers and facilitators to implementation of best-practice dementia care recommendations—a qualitative interview study

Article

Full-text available

May 2024

Introduction With an aging population and a growing prevalence of people living with dementia, the demand for best-practice dementia care in general practice increases. There is an opportunity to better utilise the nurse role within the primary care team to meet this increasing demand in the provision of care for people living with dementia. However, general practice nurses have limited knowledge in the provision of best-practice care for people living with dementia and their carer(s). A number of best-practice dementia care recommendations contained in the Australian Clinical Practice Guidelines and Principles of Care for People with Dementia have been identified as highly relevant to the role of the general practice nurse. Aims To explore general practice nurses’ perspectives on published best-practice dementia care recommendations relevant to their role and identify barriers and facilitators to their implementation into clinical practice. Methods Thirteen Australian general practice nurses took part in this qualitative interview study. The research questions for this study were addressed within a paradigmatic framework of social constructionism. Data were transcribed verbatim and thematically analysed. Results There was a high level of agreement between general practice nurses that the recommendations were important, reflected best-practice dementia care and were relevant to their role. However the recommendations were perceived as limited in their usefulness to nurses’ clinical practice due to being too vague and lacking direction. Four main themes were identified describing barriers and facilitators to operationalising best-practice dementia care.: creating a comfortable environment; changing approach to care; optimising the general practice nurse role and working collaboratively. Nine sub-themes were described: physical environment; social environment; complexity of care; care planning for the family; professional role and identity, funding better dementia care, education, networking and resources; different roles, one team; and interagency communication. Conclusion This study identified several factors that need addressing to support general practice nurses to integrate best-practice dementia care recommendations into daily clinical practice. The development of interventions needs to include strategies to mitigate potential barriers and enhance facilitators that they perceive impact on their delivery of best-practice care for people living with dementia and their carer(s). The knowledge gained in this study could be used to develop multi-faceted interventions informed by theoretical implementation change models to enable the general practice nurse to operationalise best-practice dementia care recommendations.

The Mediating Role of Attitudes Towards Dementia on the Relationship Between Dementia Knowledge and Behaviors Towards Persons with Dementia: A Cross-Sectional Study

Article

Full-text available

Dec 2023

Purpose To examine the mediating effect of attitudes towards dementia on the relationship between dementia knowledge and behaviors towards persons with dementia. Participants and Methods A cross-sectional survey was conducted with 313 adults (age ≤ 20 years). Participants were recruited using non-probability convenience sampling from medical clinics, community centers, and supermarkets located in the Wanhua District of Taipei City. Data were collected with the following self-report questionnaires: a demographic survey, validated instruments for dementia knowledge and attitudes towards dementia (assessed using the Alzheimer’s Disease Knowledge Scale and the Approaches to Dementia Questionnaire, respectively), and a researcher-developed survey on unfriendly behaviors towards persons with dementia. Results Pearson’s correlation and multiple linear regression analysis indicated that higher scores for dementia knowledge and more positive attitudes about dementia were significantly associated with lower levels of unfriendly behaviors towards persons living with dementia. Mediation analysis using a robust bootstrap test with 5000 samples indicated that attitudes toward dementia had a partial mediating effect on the relationship between dementia knowledge and unfriendly behaviors. Conclusion Our findings suggest that increasing public awareness and knowledge about dementia could help the general population develop better attitudes towards dementia, which could subsequently help improve behaviors towards persons living with dementia.

Forward with Dementia: process evaluation of an Australian campaign to improve post-diagnostic support

Article

Full-text available

Dec 2023
BMC HEALTH SERV RES

Background Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support. Methods Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people with dementia and carers (secondary audience). The campaign ran between October 2021 and June 2022, with 3-months follow-up. The RE-AIM framework was used for process evaluation. Measurements included surveys and interviews, a log of activities (e.g. webinars, social media posts) and engagements (e.g. attendees, reactions to posts), and Google Analytics. Results There were 29,053 interactions with campaign activities. More than three-quarters of professionals (n = 63/81) thought webinars were very or extremely helpful. Professionals and people with dementia and carers reported that the website provided appropriate content, an approachable tone, and was easy to use. Following campaign engagement, professionals planned to (n = 77/80) or had modified (n = 29/44) how they communicated the diagnosis and/or provided post-diagnostic information and referrals. Qualitative data suggested that the campaign may have led to benefits for some people with dementia and carers. Conclusions Forward with Dementia was successful in terms of reach, appropriateness, adoption and maintenance for professionals, however flow-through impacts on people with dementia are not clear. Targeted campaigns can potentially change health professionals’ communication and support around chronic diseases such as dementia.

‘You Don’t Look Like You Have Dementia’

Chapter

Full-text available

Sep 2023

This chapter explores different people’s perceptions of dementia. We look at the visibility of dementia and the consequences of being told ‘you don’t look like you have dementia’. The group debates whether it would be best for people to recognise dementia and the ways in which we can raise awareness and educate people. We ultimately wish to reduce the stigma (negative perceptions and being treated poorly) surrounding dementia and those with lived experience.KeywordsStigma, Stereotypes, Awareness, Education, Frontotemporal dementia, Vascular dementia, Atypical Alzheimer’s

Suggestions on the ideal method of conducting community screenings for older adults

Article

Full-text available

Jun 2023
BMC Geriatr

Background/objectives: Since dementia and frailty lead to a reduced quality of life and risk of needing long-term care in the older adults, we hypothesized that evaluations related to dementia and frailty would be useful and of high interest in screening for the older adults. Therefore, we conducted a community screening incorporating multiple simple evaluations related to dementia and frailty. In addition to various functional evaluations, we investigated interest in tests, thoughts on the disease, and the relationships between subjective (i.e., how one feels about oneself) and objective evaluations (i.e., the results of tests and rating scales). The purpose of this study was to examine the thoughts regarding tests and diseases and the functions that make it difficult to accurately perceive changes by oneself, and to obtain suggestions on the ideal method of community screening for the older adults. Subjects/methods: The participants were 86 people aged 65 and over living in Kotoura Town who participated in the community screening, for which we obtained background information and body measurements. We also assessed physical, cognitive and olfactory function, evaluated nutritional status, and we administered a questionnaire (interest in tests, thoughts on dementia and frailty, and a subjective functional evaluation). Results: Regarding interest in tests, the participants answers were highest for physical, cognitive and olfactory function, in that order (68.6%, 60.5%, and 50.0%, respectively). In the survey on thoughts on dementia and frailty, 47.6% of participants felt that people with dementia were viewed with prejudice, and 47.7% did not know about frailty. Regarding the relationship between subjective and objective evaluations, only the assessment of cognitive function did not show a correlation between both evaluations. Conclusions: From the viewpoint of the participants' degree of interest in and the need for accurate evaluations through objective examination, the findings suggest that the assessment of physical and cognitive function may be beneficial as a screening tool for older adults. Objective evaluation is essential, particularly for assessing cognitive function. However, approximately half the participants believed people with dementia were viewed with prejudice and did not know about frailty, which may lead to barriers to testing and low interest. The importance of increasing the participation rate in community screening through disease-related educational activities was suggested.

Forward with Dementia: process evaluation of an Australian campaign to improve post-diagnostic support

Preprint

Full-text available

May 2023

Background Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support. Methods Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people with dementia and carers (secondary audience). The campaign ran between October 2021 and June 2022, with 3-months follow-up. The RE-AIM framework was used for process evaluation. Measurements included surveys and interviews, a log of activities and engagements, and Google Analytics. Results There were 28,460 interactions with campaign activities. More than three-quarters of professionals (n = 63/81) thought webinars were very or extremely helpful. Professionals and people with dementia and carers reported that the website provided appropriate content, an approachable tone, and was easy to use. Following campaign engagement, professionals planned to (n = 77/80) or had modified (n = 29/44) how they communicated the diagnosis and/or provided post-diagnostic information and referrals. Qualitative data suggested that the campaign may have led to benefits for some people with dementia and carers. Conclusions Forward with Dementia was successful in terms of reach, appropriateness adoption and maintenance for professionals, however flow-on impacts on people with dementia are not clear. Targeted campaigns can potentially change health professionals’ management of chronic diseases such as dementia.

The Perceived Impact of the Namaste Care Family Program on Nursing Home Residents with Dementia, Staff, and Family Caregivers: A Qualitative Study

Article

Full-text available

Oct 2022

Objective(s): To examine the perspectives of staff, and family caregivers (i.e., family, friends, and volunteers) on the impact of the Namaste Care Family program on all involved. The Namaste Care Family program is a structured program for people with advanced dementia based on a palliative care approach in which family caregivers provide daily sessions together with staff with the aim to increase residents' quality of life. Methods: In this descriptive qualitative study, we interviewed 12 family care-givers, and 31 staff members from 10 nursing homes. Data was analyzed thematically. Results: A perceived impact of the program was identified for the residents, staff, and family caregivers. For residents, this included well-being, more engagement, enhanced interactions, changes in energy level, and weight gain. The impact on family caregivers included a more positive view of people with dementia, changes in family visits, mixed feelings during sessions, and mixed changes in relations with all involved. For staff, this included diverse work experiences, shift to more person-centered care (more time and attention for residents, and more awareness), and developing relationships with residents and colleagues. Conclusions: The Namaste Care Family program was valued for its observed benefits and shift towards a person-centered care culture.

Profiles in Dementia-Related Anxiety: A Latent Profile Analysis

Article

Jun 2022

Objectives Dementia-related anxiety (DRA) is the concern about current or future cognitive decline and potential diagnosis of Alzheimer’s disease or related dementias (ADRD). Existing research suggests that DRA likely develops due to diverse reasons (e.g., family ADRD history, self-perceived risk, and health-related anxiety), and approaches to managing DRA likely differ as well (e.g., future planning). This study aimed to identify profiles in DRA. Method In a cross-sectional study, a convenience sample of US adults ranging in age from 18 to 82 (N = 492, Mage = 49.25, SDage = 15.43) completed online assessments of characteristics associated with DRA. Latent profile analysis was used to uncover distinct DRA profiles and promote understanding of individual characteristics associated with varying levels of DRA; multinomial regression assessed if the profiles are further distinguished by covariates. Results The resulting four-profile model reveals profile differences are largely due to DRA, self-perceived ADRD risk, and preparedness for future care needs; health-related anxiety, age, ADRD exposure, and anticipated ADRD stigma contribute to profile differences as well. Profiles of the youngest and oldest groups reported the lowest and highest levels of preparedness for future care, along with the lowest DRA and self-perceived risk. Several covariates, particularly those assessing general psychological functioning, were also related to profile membership. Discussion The resulting profiles point to several factors associated with elevated anxiety about ADRD, which do not fully match risk factors for ADRD.

Intervention Tournaments: An Overview of Concept, Design, and Implementation

Article

Full-text available

Oct 2021
PERSPECT PSYCHOL SCI

A large portion of research in the social sciences is devoted to combating societal and social problems, such as prejudice, discrimination, and intergroup conflict, with interventions. However, these interventions are often developed based on the theories and/or intuitions of those who developed them and evaluated in isolation without comparing their efficacy to other interventions. Here, we make the case for an experimental design that addresses such issues: an intervention tournament, i.e., a study that compares several different interventions against a single control and utilizes the same standardized outcome measures during assessment and participants drawn from the same population. We begin by highlighting the utility of intervention tournaments as an approach that complements other, more commonly used, approaches to addressing societal issues. We then describe various approaches to intervention tournaments, which include crowdsourced, curated, and in-house developed intervention tournaments, with their unique characteristics. Finally, we discuss practical recommendations and key design insights for conducting such research, based on the existing literature. These include considerations of intervention tournament deployment, characteristics of included interventions, statistical analysis and reporting, study design, longitudinal and underlying psychological mechanism assessment, and theoretical ramifications.

Social stigma in dementia: Italian validation of the Dementia Public Stigma Scale (DePSS)

Article

Jan 2025

Unlabelled: . Social stigma in dementia: Italian validation of the Dementia Public Stigma Scale (DEPSS). Introduction: Dementia-related stigma is a significant barrier to supporting people with dementia and promoting their social inclusion. The Dementia Public Stigma Scale (DePSS) measures all the dimensions of dementia-related public stigma: fear and discomfort, inability and loss, personality recognition, burden and exclusion. Aim: To validate the DePSS in Italian and measure dementia-related public stigma. Method: The DePSS has 16 items rated on a Likert scale 1-7 (1=strongly disagree; 7=strongly agree). The average score for the overall scale and for each of its five factors ranges from 1 to 7, higher scores indicate higher stigma. The original English tool was translated and culturally adapted and psychometric validation was performed. The scale was then tested on 1,329 people (aged 14-93 years). Results: The Italian version of the DePSS confirmed the original five-factor structure and was a clear, valid and reliable tool for measuring dementia-related stigma. The median overall score was 3.6 (IQR 3.1-4.0) that indicates moderate stigma. The highest levels of stigma emerged in the factor inability and loss (median 4.8, IQR 4.2-5.4) and burden (median 4.0, IQR 2.5-5.0). Living with a person with dementia was not apparently associated with the overall stigma level (p=0.406) nor with any of its dimensions. Conclusions: The Italian DePSS version will be able to shape healthcare strategies and educational and awareness initiatives.

Avaliação dos Conhecimentos sobre a Doença de Alzheimer entre Cuidadores de Idosos com Demência

Article

Full-text available

Dec 2024

Objetivos: Avaliar o nível de conhecimento sobre a Doença de Alzheimer entre cuidadores de idosos com demência, antes e após uma intervenção psicoeducativa com treino cognitivo. Métodos: Este estudo, aprovado pelo Comitê de Ética em Pesquisa da USP, envolveu 45 cuidadores de idosos com Doença de Alzheimer. No baseline (T0) e após intervenção (T1), os participantes responderam à Escala de Conhecimento da Doença de Alzheimer (ADKS), composta por 30 questões. Resultados: Os resultados indicam que a intervenção teve um impacto positivo em alguns domínios específicos do conhecimento sobre a Doença de Alzheimer. Conclusão: Os resultados iniciais evidenciam a necessidade de ações educativas dirigidas aos cuidadores de pessoas com Doença de Alzheimer.

Determination of Alzheimer’s Disease-Related Knowledge and Stigma Levels of Adult Individuals

Article

Aug 2024

Aim: In Türkiye, Alzheimer’s disease (AD) and related dementia (ADRD) are among the diseases that should be addressed as a priority in terms of public health. What is known about the level of AD awareness and stigma related AD, especially among Turkish adults, is insufficient. The contribution of these two important factors to the disease burden and their impact on case finding and treatment effectiveness are unknown. In this regard, the aim of the study is to determine the knowledge and stigma levels of adults and older adults regarding AD. Materials and Methods: A descriptive and analytical design was used. A total of 888 adult and older adult individuals participated in the study. Data were collected with a questionnaire, Alzheimer’s Disease Knowledge Scale (ADKS) and Perceived Stigma Against AD Survey (STIGMA-AD). Results: The average age of the participants is 49.75 (8.89), 85.7% are between the ages of 40-59, 64.1% are women, 60.8% are married, and 51.5% are at basic education level. The average ADKS total score of adults and older adults participating in the study is 16.97 (2.47). The average STIGMA-AD total score of adults and older adults participating in the study is 21.05 (3.69). Conclusion: Serious knowledge gaps have been noted among Turkish adults and older adults in both general AD and its sub-dimensions. The level of AD-related stigma is high both in total and in all sub-dimensions. In this study, no significant relationship was found between AD knowledge and stigma.

Effectiveness of interventions to prevent abuse in people living with dementia in community settings: A systematic review

Article

Full-text available

Jun 2024
Dementia

The abuse of older adults is a societal, and legal issue. A person living with dementia is at high risk for abuse due to their physical and cognitive decline. Objectives This review examined the evidence for interventions to prevent the abuse of people living with dementia in the community. Methods The articles were retrieved from 2000 to 2023 from six databases, including MEDLINE via PubMed, CINAHL Plus via EBSCO, EMBASE, ProQuest Medical Library, Web of Science, and Scopus. The research articles that focused on finding the effectiveness of interventions for preventing abuse of people living with dementia in community settings were included in this review. The review included randomized controlled trials and pre-test post-test trials only. The quality appraisal of the eligible studies was done using ROB 2 and ROBINS II. The findings were tabulated and narratively synthesised. Results Out of 1831 articles, only three were included in this review. Only two RCTs were included in this efficacy review. Both the studies showed that the interventions were not effective in reducing abuse. The studies utilised family caregiver interventions like psychological interventions and online supportive education. The review identified psychological interventions with some evidence. Another study was a quasi-experimental study that used dialectical behaviour therapy as an intervention to reduce abuse occurrence. The study showed low evidence and focused only on reporting of elder abuse as an outcome. Conclusion This review found very few studies and was not able to draw a conclusion on the effectiveness of interventions for abuse in people living with dementia. Given the paucity of research, there is a clear need to identify how to overcome the challenges faced in elder abuse research and further refine the development of approaches to reduce elder abuse among people living with dementia in community settings.

Strategies for fostering residents' positive attitude toward social participation of people with dementia: A cross‐sectional analysis

Article

Sep 2023
GERIATR GERONTOL INT

On becoming a dementia-friendly community: An empirical study of the individual factors that predict openness towards dementia-friendly communities

Article

Jun 2022

Background and objectives Evidence suggests that limited public awareness and dementia-related stigma can create barriers to community inclusiveness. This study explored the relation between public knowledge of dementia, attitudes towards people with dementia, experience with dementia and openness towards dementia-friendly communities. Research design and methods Two-hundred and twenty-nine members of the public completed a cross-sectional online survey with three established measures [Alzheimer’s Disease Knowledge Test, Attitudes Towards People with Dementia scale and Understanding of Health Problems survey] and one exploratory scale [Openness Towards Dementia-Friendly Communities]. An existing ‘mild’ dementia vignette was used to evaluate dementia recognition. Factors contributing to correct dementia recognition (knowledge, exposure to dementia, education and gender), worry about developing dementia (knowledge, exposure and respondent age), and openness towards dementia-friendly communities (knowledge, exposure and attitudes) were examined through group comparisons and a multiple linear regression. Results Consistent with the literature, the respondents had poor knowledge, reasonably good dementia recognition, and mostly positive attitudes towards people with dementia. None of the proposed factors were significantly associated with correct dementia recognition, and only gender was significantly associated with dementia worry. Knowledge and attitudes towards people with dementia (not exposure) were significant independent predictors of openness towards dementia-friendly communities. Discussion and implications The expansion of dementia-friendly communities will require further investment in awareness-raising initiatives to improve dementia knowledge and attitudes in the community. This study shows the importance of these factors in the broader community’s openness towards dementia-friendly communities.

Stigmatic beliefs towards persons with dementia: comparing Israeli and Greek college students

Article

Full-text available

Jul 2019

Objectives Increasing Alzheimer’s Disease (AD) awareness and decreasing stigmatic beliefs among the general public are core goals of National Dementia Strategy programs. College students are one of the most important targeted populations for achieving this goal. The aim of the current study was to examine AD public stigma among Israeli and Greek college students. Design A cross-sectional survey was conducted among college students in Israel and Greece using vignette methodology. Participants Seven hundred and fifty three college students – 213 Israeli and 540 Greek – participated in the study. Measurements Three dimensions of stigma were assessed (cognitive, emotional, and behavioral) together with health beliefs regarding AD and socio-demographic characteristics. Results Low levels of stigma were found in both samples, with Israeli students reporting statistically significant higher levels of stigmatic beliefs than Greek students in all the dimensions, except with willingness to help. Similar to stigma in the area of mental illness, the findings in both countries supported an attributional model for AD public stigma, i.e. positive correlations were found among cognitive attributions, negative emotions, and discriminatory behaviors in both countries. Differences between the countries emerged as a significant determinant of cognitive, as well as of negative emotions and willingness to help. Conclusion Our findings might help researchers and clinicians to apply the knowledge gained in the area of mental illness to the development of effective ways of reducing AD public stigma. Moreover, they allowed us to frame the understanding of AD public stigma within a socio-cultural context.

A qualitative study of the impact of a dementia experiential learning project on pre-medical students: A friend for Rachel

Article

Full-text available

May 2019
BMC Med Educ

Background With Alzheimer’s disease and other dementias affecting approximately 7 million people in the United States, comprehension of the multitude of issues facing individuals with dementia and their families and compassion for them are essential components of good healthcare. The service learning program, A Friend for Rachel, was developed in 2011 to train pre-medical students about dementia and give them sustained exposure to people with dementia to foster understanding and compassion and decrease stigma,. The purpose of this study was to evaluate the impact of the program on pre-medical students. Methods Since 2011, 101 students participated in A Friend for Rachel. They were required to write weekly reflections about their interactions with their friends living with dementia. Each study author read these reflections to identify major recurrent themes. The authors discussed the themes and came to consensus. The reflections were then reread to analyze for sub-themes. Results Analysis of students’ reflections exposed five major themes: learnings about dementia, learnings about caregiving, their own experienced emotions, impact on career choice and learnings about good medicine, and impact on life. The reflections demonstrated appreciation of the issues raised by dementia, empathy for individuals living with dementia and their families, and comfort with people with dementia. The reflections also demonstrated how the program had a positive impact on the personal lives of the students. Conclusions Through experiencing a sustained relationship with a person living with dementia, A Friend for Rachel allows pre-medical students to re-evaluate their beliefs about dementia and appreciate the need for compassionate care for people with dementia. A Friend for Rachel also provides students with the opportunity to examine their personal lives and goals.

Assessing implicit and explicit dementia stigma in young adults and care-workers

Article

Full-text available

Oct 2018

This aim of this study was to assess implicit and self-reported stigma towards people with dementia in young adults with no contact or experience ( n = 23), and in care-workers ( n = 17 professional dementia care-workers). Data were analysed to determine whether stigma was related to self-reported levels of depression, anxiety, stress and professional burnout. Forty participants completed the Implicit Relational Assessment Procedure and Dementia Attitudes Scale. The Depression Anxiety and Stress Scale and Maslach Burnout Inventory were used to measure depression, anxiety, stress and professional burnout. The young adult group showed statistically significant levels of dementia stigma (on the two " dementia" trial-types, p = .027 and p = .030). Statistical analyses showed more dementia-positive attitudes in care-workers compared to young adults on the Implicit Relational Assessment Procedure and the Dementia Attitudes Scale (both p's=.021). Spearman's Rho correlations tests showed that for the care-givers, higher levels of burn-out were associated with more negative attitudes towards people with dementia on both of the Dementia Attitudes Scale subscales (social comfort p<.001 and dementia knowledge p=.005). The results support prior research showing that experience with a stigmatised group can lower stigma and demonstrate the importance of providing a supportive work environment to mitigate burnout.

Dementia knowledge assessment scale (DKAS): Confirmatory factor analysis and comparative subscale scores among an international cohort

Article

Full-text available

Jul 2017
BMC Geriatr

Background Dementia is a life-limiting condition that is increasing in global prevalence in line with population ageing. In this context, it is necessary to accurately measure dementia knowledge across a spectrum of health professional and lay populations with the aim of informing targeted educational interventions and improving literacy, care, and support. Building on prior exploratory analysis, which informed the development of the preliminarily valid and reliable version of the Dementia Knowledge Assessment Scale (DKAS), a Confirmatory Factor Analysis (CFA) was performed to affirm construct validity and proposed subscales to further increase the measure’s utility for academics and educators. Methods A large, de novo sample of 3649 volunteer respondents to a dementia-related online course was recruited to evaluate the performance of the DKAS and its proposed subscales. Respondents represented diverse cohorts, including health professionals, students, and members of the general public. Analyses included CFA (using structural equation modelling), measures of internal consistency (α), and non-parametric tests of subscale correlation (Spearman Correlation) and score differences between cohorts (Kruskal-Wallis one-way analysis of variance). Results Findings of the CFA supported a 25-item, four-factor model for the DKAS with two items removed due to poor performance and one item moved between factors. The resultant model exhibited good reliability (α = .85; ωh = .87; overall scale), with acceptable subscale internal consistency (α ≥ .65; subscales). Subscales showed acceptable correlation without any indication of redundancy. Finally, total and DKAS subscale scores showed good discrimination between cohorts of respondents who would be anticipated to hold different levels of knowledge on the basis of education or experience related to dementia. Conclusion The DKAS has been confirmed as a reliable and valid measure of dementia knowledge for diverse populations that is capable of elucidating knowledge characteristics across four coherent domains: 1) Causes and Characteristics, 2) Communication and Behaviour, 3) Care Considerations, and 4) Risks and Health Promotion. Importantly, the four confirmed subscales clearly distinguish between groups who might be expected to hold differing levels of knowledge about dementia, allowing for a fine-grained level of detail to be established when evaluating baseline understanding or knowledge change associated with educational intervention.

Article

Full-text available

Jul 2017

Sarang Kim

Despite the high prevalence of dementia, negative community attitudes and/or stigma towards dementia are still common. This study reports findings from a nationally representative telephone survey with a sample of 1000 Australian adults examining dementia-related stigma, cultural identity and help-seeking behaviours. Significant differences were found between the age cohorts for stigma, demonstrating dementia-related stigma to be higher in older age. Men reported significantly higher levels of stigma than women. Stigma was also higher amongst non-English speakers and those born outside of Australia. While 91% of participants indicated help-seeking intentions, only 36.3% reported they would seek help immediately when symptoms appeared. Dementia-related stigma was associated with help-seeking intentions among younger cohorts only. These findings suggest that dementia-related stigma is specific to age, gender and cultural background. These findings are of particular importance as they highlight the need to develop dementia-stigma reduction strategies tailored specifically to different age-cohorts, gender and culture groups.

Body brain life: A randomized controlled trial of an online dementia risk reduction intervention in middle-aged adults at risk of Alzheimer's disease

Article

Full-text available

Jun 2015

Objective To examine the efficacy of body brain life (BBL), a 12-week online dementia risk reduction intervention. Methods BBL was evaluated in a randomized controlled trial in 176 middle-aged adults with >2 risk factors and <2 protective factors for Alzheimer's disease (AD) assessed on a brief screening instrument. Participants were randomized to BBL, BBL plus face-to-face group sessions (BBL + FF) or active control (control). Score on the Australian National University-Alzheimer's disease risk index (ANU-ADRI), a validated index of AD risk, was the primary outcome measure assessed at baseline, 12, and 26 weeks. Results A group by time interaction at 26 weeks showed a significant reduction in ANU-ADRI score for BBL compared with control. Planned contrasts showed the BBL and BBL + FF groups had improvement in ANU-ADRI scores at 12 weeks (BBL + FF: z = −0.25; P = .021; BBL: z = −0.25; P = .008) and 26 weeks (BBL + FF: z = −0.48; P < .001; BBL: z = −0.28; P = .004) due to increase in protective factors. Conclusions This short intervention resulted in dementia risk reduction. Online dementia risk reduction interventions show promise for reducing the overall dementia risk in middle-aged adults with multiple risk factors. Clinical Trial Registration: The study is registered under Trial Registration: Reg. # ACTRN12612000147886.

World Alzheimer Report 2015. The Global Impact of Dementia. An Analysis of Prevalence, Incidence, Cost and Trends

Technical Report

Full-text available

Aug 2015

World Alzheimer Report 2012: Overcoming the Stigma of Dementia

Data

Full-text available

Sep 2012

The World Alzheimer Report 2012: Overcoming the stigma of dementia, released on 21 September 2012, shares results from a worldwide survey conducted with people with dementia and carers on their personal experiences of stigma. The report provides information on stigma and dementia, highlights best practices in the field of dementia, and makes recommendations which could help reduce stigma.

A 12-week multidomain intervention versus active control to reduce risk of Alzheimer's disease: Study protocol for a randomized controlled trial

Article

Full-text available

Feb 2013
TRIALS

Background Disappointing results from clinical trials of disease-modifying interventions for Alzheimer’s dementia (AD), along with reliable identification of modifiable risk factors in mid life from epidemiological studies, have contributed to calls to invest in risk-reduction interventions. It is also well known that AD-related pathological processes begin more than a decade before the development of clinical signs. These observations suggest that lifestyle interventions might be most effective when targeting non-symptomatic adults at risk of AD. To date, however, the few dementia risk-reduction programs available have targeted individual risk factors and/or were restricted to clinical settings. The current study describes the development of an evidence-based, theoretically-driven multidomain intervention to reduce AD risk in adults at risk. Method The design of Body Brain Life (BBL) is a randomized controlled trial (RCT) to evaluate a 12-week online AD risk-reduction intervention. Eligible participants with several modifiable risk factors on the Australian National University (ANU) AD Risk Index (ANU-ADRI) are randomly allocated to an online only group, an online and face-to-face group, or an active control group. We aim to recruit 180 participants, to undergo a comprehensive cognitive and physical assessment at baseline, post-intervention, and 6-month follow-up assessment. The intervention comprises seven online modules (dementia literacy, risk factor education, engagement in physical, social, and cognitive lifestyles, nutrition, and health monitoring) designed using contemporary models of health behavior change. Discussion The BBL program is a novel online intervention to reduce the risk of AD in middle-aged adults at risk. The trial is currently under way. It is hypothesized that participants in the intervention arms will make lifestyle changes in several domains, and that this will lead to a reduction in their AD risk profile. We also expect to show that health behavior change is underpinned by changes in psychological determinants of behavior. If successful, the findings will contribute to the development of further dementia risk reduction interventions, and thus contribute to the urgent need to lower dementia risk factors in the population to alter future projections of disease prevalence. Longer follow-up of BBL participants and replications using large samples are required to examine whether reduction in AD risk factors will be associated with reduced prevalence. Trial registration Reg. no. ACTRN12612000147886

Lessons From Social Psychology on Discrediting Psychiatric Stigma

Article

Full-text available

Sep 1999

Advocacy, government, and public-service groups rely on a variety of strategies to diminish the impact of stigma on persons with severe mental illness. These strategies include protest, education, and promoting contact between the general public and persons with these disorders. The authors argue that social psychological research on ethnic minority and other group stereotypes should be considered when implementing these strategies. Such research indicates that (a) attempts to suppress stereotypes through protest can result in a rebound effect; (b) education programs may be limited because many stereotypes are resilient to change; and (c) contact is enhanced by a variety of factors, including equal status, cooperative interaction, and institutional support. Future directions for research and practice to reduce stigma toward persons with severe mental illness are discussed.

An Attribution Model of Public Discrimination Towards Persons with Mental Illness

Article

Full-text available

Jul 2003

In this study, we build on previous work by developing and estimating a model of the relationships between causal attributions (e.g., controllability, responsibility), familiarity with mental illness, dangerousness, emotional responses (e.g., pity, anger, fear), and helping and rejecting responses. Using survey data containing responses to hypothetical vignettes, we examine these relationships in a sample of 518 community college students. Consistent with attribution theory, causal attributions affect beliefs about persons' responsibility for causing their condition, beliefs which in turn lead to affective reactions, resulting in rejecting responses such as avoidance, coercion, segregation, and withholding help. However, consistent with a danger appraisal hypothesis, the effects of perceptions of dangerousness on helping and rejecting responses are unmediated by responsibility beliefs. Much of the dangerousness effects operate by increasing fear, a particularly strong predictor of support for coercive treatment. The results from this study also suggest that familiarity with mental illness reduces discriminatory responses.

The Alzheimer Conundrum: Entanglements of Dementia and AgingEntanglements of Dementia and Aging

Book

Oct 2013

Margaret Lock

Due to rapidly aging populations, the number of people worldwide experiencing dementia is increasing, and the projections are grim. Despite billions of dollars invested in medical research, no effective treatment has been discovered for Alzheimer's disease, the most common form of dementia. This book exposes the predicaments embedded in current efforts to slow down or halt Alzheimer's disease through early detection of pre-symptomatic biological changes in healthy individuals. Based on a meticulous account of the history of Alzheimer's disease and extensive in-depth interviews, the book highlights the limitations and the dissent associated with biomarker detection. It argues that basic research must continue, but should be complemented by a public health approach to prevention that is economically feasible, more humane, and much more effective globally than one exclusively focused on an increasingly harried search for a cure.

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

Article

Feb 2020

Objective 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.

WHAT DOES THE GENERAL PUBLIC REALLY WANT TO KNOW ABOUT DEMENTIA? A FOCUS GROUP STUDY

Article

Jul 2018

A new curriculum to address dementia-related stigma: Preliminary experience with Alzheimer’s Association staff

Article

Jan 2018

Objective Develop and test a stigma awareness and education curriculum targeted to non-medical staff of a local Alzheimer’s Association chapter. Methods The curriculum, developed in collaboration with leadership and educational staff from the Cleveland Chapter of the Alzheimer’s Association, included a definition, types, and domains of stigma; effects of stigma on individuals with dementia and their families; stigma evaluation studies; tips to address the topic of dementia-related stigma with individuals and families. Lastly, an interactive discussion of real-life scenarios facilitated stigma recognition and management. Results Most staff felt the training improved their ability to identify Alzheimer’s disease stigma, made them more comfortable talking about stigma, and would change the way they interacted with people and families impacted by Alzheimer’s disease. Conclusions This brief, practical educational curriculum has potential to improve awareness of dementia stigma in Alzheimer’s Association staff. Research is needed to expand stigma awareness in individuals and groups with varying levels of dementia knowledge.

Does personal experience of dementia change attitudes? The Bristol and South Gloucestershire survey of dementia attitudes

Article

Jan 2018

Background It is unclear how attitudes towards people with dementia are formed and whether, for instance, increased contact with people with dementia, either through work or personal experience alters attitudes. This study used a validated questionnaire (the Approaches to Dementia Questionnaire) to examine whether having experience of dementia (either as a result of work, or by being affected by dementia) is associated with differences in attitudes towards dementia. Methods A modified version of the Approaches to Dementia Questionnaire was completed by 2201 participants, either online or in written form. Participants also recorded their age, gender and ethnicity as well as whether they worked with people with dementia or had been personally affected by dementia. Results Increased contact with people with dementia was associated with increases in both total Approaches to Dementia Questionnaire scores and across both sub-scales reflecting more positive person-centred attitudes toward dementia. The highest levels of increase were found amongst non-white participants. Conclusions This study is, we believe, the first attempt to look systematically at whether greater contact with people with dementia is associated with changes in attitudes. The results strongly support the contention that increased contact with people with dementia leads to more person-centred attitudes, and by inference, less stigmatising views.

A Systematic Review of Dementia-Related Stigma Research: Can We Move the Stigma Dial?

Article

Sep 2017
AM J GERIAT PSYCHIAT

Stigma negatively affects individuals with cognitive impairment and dementia. This literature review examined the past decade (January 2004-December 2015) of world-wide research on dementia-related stigma. Using standard systematic review methodology, original research reports were identified and assessed for inclusion based on defined criteria. Initial database searches yielded 516 articles. After removing duplicates and articles that did not fit inclusion criteria (419), 97 articles were reviewed, yielding a leaving a final total of 51 publications, mainly originating in the U.S. and Europe. Studies were assessed for date, geographic region, sample description, methodology and key findings. Reports were evaluated on; 1) how stigmatizing attitudes may present in various sub-groups, including in racial or ethnic minorities, 2) stigma assessment tools and, 3) prospective or experimental approaches to assess or manage stigma. Stigma impedes help-seeking and treatment, and occurs broadly and world-wide. Stigmatizing attitudes appear worse among those with limited disease knowledge, with little contact with people with dementia, in men, in younger individuals, and in the context of ethnicity and culture. In some cases, health providers may have stigmatizing attitudes. In research studies, there does not appear to be consensus on how to best evaluate stigma, and there are few evidence-based stigma reduction approaches. Given the projected increase in persons with dementia globally, there is a critical need for research that better identifies and measures stigma and tests new approaches that can reduce stigmatizing attitudes.

The Need for Dementia Care Services

Chapter

Jul 2013

As the number of people with dementia increases with ageing populations across the world and our knowledge improves, more and better services are needed. This chapter covers the services which we have at present and those which evidence indicates should be available. These are divided into prevention, treatment and care. The chapter discusses strategies to increase diagnosis, the advantages of early and active treatment of dementia and the dedicated services needed to achieve these. If current trials of disease modifying medications prove successful this will probably lead to further, radical changes in service configuration, possibly with screening programmes focused on the identification of pre-dementia syndromes and home treatments. Making these evidence based strategies available is now a global challenge.

Attitudes Toward Alzheimer’s Care-Seeking Among Korean Americans: Effects of Knowledge, Stigma, and Subjective Norm

Article

Mar 2017

Purpose Early detection of Alzheimer’s disease (AD) ensures that affected individuals and their caregivers can make appropriate plans for health care needs, yet many ethnic minorities delay seeking care for AD until the disease has progressed. This study examined attitudes toward care-seeking for AD among Korean Americans (KAs) and identified factors affecting their attitudes. Methods A cross-sectional survey was used to collect data from 234 KA adults. We conducted hierarchical regression analyses to examine the effects of sociocultural background (age, gender, education, cultural orientation), AD knowledge and exposure to AD, and beliefs about AD (stigma of pity, shame, and public avoidance) and AD care (subjective norm) on KAs’ attitudes toward seeking AD care from primary care physicians (PCPs) and AD specialists. We also tested whether knowledge of AD moderated the impact of beliefs about AD and AD care on KAs’ attitudes toward seeking AD care. Results For both PCPs and AD specialists, the subjective norm had the strongest effect on KAs’ attitudes toward care seeking (β = 0.557 for PCPs, β = 0.360 for specialists). Effects of stigma beliefs disappeared in the presence of the subjective norm. AD knowledge moderated the impact of the subjective norm on the attitudes toward both PCPs (β = –1.653) and specialists (β = –1.742). Implications The significance of the subjective norm in KAs’ attitudes toward AD care-seeking underscores the importance of public education, and our study suggests that increasing AD knowledge could facilitate a change in public attitudes toward seeking AD care.

Understanding the impact of stigma on people with mental illness

Article

Jan 2002

The Alzheimer conundrum: Entanglements of dementia and aging

Article

Jan 2013

M. Lock

Because of rapidly aging populations, the number of people worldwide experiencing dementia is increasing and the projections are grim. Despite hundreds of millions of dollars invested in medical research, no effective treatment has been discovered for Alzheimer's disease, the most common form of dementia. The Alzheimer Conundrum exposes the predicaments embedded in current efforts to slow down or halt Alzheimer's disease through early detection of presymptomatic biological changes in healthy individuals. Based on a careful study of the history of Alzheimer's disease and extensive in-depth interviews with clinicians, scientists, epidemiologists, geneticists, and others, Margaret Lock highlights the limitations and the dissent implicated in this approach. She stresses that one major difficulty is the well-documented absence of behavioral signs of Alzheimer's disease in a significant proportion of elderly individuals, even when Alzheimer neuropathology is present in their brains. This incongruity makes it difficult to distinguish between what counts as normal versus pathological and, further, makes it evident that social and biological processes contribute inseparably to aging. Lock argues that basic research must continue, but it should be complemented by a realistic public health approach available everywhere that will be more effective and more humane than one focused almost exclusively on an increasingly frenzied search for a cure.

Help-Seeking for Dementia A Systematic Review of the Literature

Article

Oct 2014

Background: Help-seeking (HS) for dementia presents a great challenge, especially because a timely and appropriate HS process might be associated with better outcomes for the person with dementia, their caregivers, and society. A clear understanding of the HS concept and its measurement in the area of dementia might improve the effectiveness of the process. Aims: The aims of our systematic review were: (1) to systematically obtain and evaluate the relevant literature on HS and dementia; and (2) to summarize current research findings and draw conclusions for future research and clinical care in this area. Method: A systematic review of the literature on HS and dementia was conducted up till June 2013. Results: From the 478 retrieved articles, 48 were included in the review. Conceptually, the studies examined professional and nonprofessional sources of help; showed preference for seeking help from close relatives followed by primary health caregivers; and identified inadequate knowledge and stigmatic beliefs as the main barriers to HS. The majority of the studies did not rely on a theoretical framework. Conclusions: Although the body of literature in the area of HS and dementia is growing, several conceptual and methodological limitations still have to be resolved to advance knowledge in the area.

The effects of exposure to scenarios about dementia on stigma and attitudes toward dementia care in a Chinese community

Article

Nov 2011
INT PSYCHOGERIATR

Background: This study investigated whether brief exposure to information has any effect on stigmatizing attitudes towards older people with dementia, and how people responded to this medical diagnosis. Methods: 494 adults were randomly assigned to three groups differentiated by experimental conditions. Group A (control) responded to questions on stigma directly. Group B (symptom) read two vignettes that described the symptoms of two fictitious individuals with dementia, before answering questions on stigma. Group C (label) read the same vignettes which ended with a statement that the person was recently diagnosed with dementia by a physician. Data were analyzed with ANOVA, together with other pre-existing between-subjects factors. Results: Brief exposure to information about dementia led to a statistically significant reduction in stigma (Groups B, C < A), regardless of whether the diagnostic label of "dementia" was included or not. Moreover, lower stigma was reported by persons who knew a relative or friend with dementia, who were younger and more educated, and who thought dementia was treatable. Conclusions: As stigmatizing attitudes toward dementia are still a hindrance to early help-seeking in Asian communities, the findings suggest that community education may play a useful role in alleviating this barrier to early detection and intervention.

Dementia in the news: the media coverage of Alzheimer's disease

Article

Apr 2006
AUSTRALAS J AGEING

Allison M Kirkman

Objective: To identify and analyse the contexts in which Alzheimer's disease is portrayed in the New Zealand print media. Methods: Items from 15 newspapers from over a 5‐year period, which contained the word ‘Alzheimer's’, were subjected to a qualitative interpretive analysis to determine recurring patterns of the representation of Alzheimer's disease. Results: The word ‘Alzheimer's’ was found in notices, scientific reports, obituaries, personal stories, ‘missing people’ reports and reports dealing with residential care for people with Alzheimer's disease. The advocacy organisation, Alzheimers New Zealand, was called upon frequently by the media to speak for people with Alzheimer's disease and their families. Conclusion: The analysis revealed that the media remains a powerful transmitter of stereotypes. In the case of Alzheimer's disease these included those associated with ageing and with dementia.

Frames and Counter-Frames Giving Meaning to Dementia: A Framing Analysis of Media Content

Article

Feb 2012
SOC SCI MED

Media tend to reinforce the stigmatization of dementia as one of the most dreaded diseases in western society, which may have repercussions on the quality of life of those with the illness. The persons with dementia, but also those around them become imbued with the idea that life comes to an end as soon as the diagnosis is pronounced. The aim of this paper is to understand the dominant images related to dementia by means of an inductive framing analysis. The sample is composed of newspaper articles from six Belgian newspapers (2008-2010) and a convenience sample of popular images of the condition in movies, documentaries, literature and health care communications. The results demonstrate that the most dominant frame postulates that a human being is composed of two distinct parts: a material body and an immaterial mind. If this frame is used, the person with dementia ends up with no identity, which is in opposition to the Western ideals of personal self-fulfilment and individualism. For each dominant frame an alternative counter-frame is defined. It is concluded that the relative absence of counter-frames confirms the negative image of dementia. The inventory might be a help for caregivers and other professionals who want to evaluate their communication strategy. It is discussed that a more resolute use of counter-frames in communication about dementia might mitigate the stigma that surrounds dementia.

Family Stigma and Caregiver Burden in Alzheimer's Disease

Article

Nov 2011
GERONTOLOGIST

The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on caregiver burden among those caring for a relative with Alzheimer's disease (AD) has yet to undergo theoretical and empirical testing. The aim of this study was to examine whether family stigma is a predictor of caregiver burden in the case of Alzheimer's disease. Structured face-to-face interviews were conducted with 185 adult child caregivers (75% female; mean age = 53 years) for persons with Alzheimer's disease. Caregiver stigma variables improved the prediction of caregiver burden by adding an additional 18% to the explained variance over and above the other covariates. The 2 caregiver stigma variables of shame and decreased involvement with caregiving were found to be the major contributing factors. Our findings show that caregiver stigma increases caregiver burden in the case of Alzheimer's disease. Using this knowledge, psychosocial interventions should target stigmatic beliefs in order to reduce caregiver burden.

Public Stigma: The Community's Tolerance of Alzheimer Disease

Article

Feb 2010

To investigate public stigma relating to Alzheimer disease (AD) and variables correlated with this outcome. Cross-sectional study. City of São Paulo, Brazil. A representative sample of 500 individuals aged 18-65 years, living within the community. Subjects were interviewed to assess three dimensions of stigma (stereotypes, prejudice, and discrimination). Stigma was considered present in this study when all three domains were simultaneously fulfilled. The 41.6% of the participants expressed stereotypes; 43.4% prejudice; and 35.5% discrimination. Among the whole sample, 14.8% endorsed the stigma definition criterion adopted for this study. Those with fewer years of education were 2.32 times as likely to stigmatize persons carrying AD. Stigma was unaffected by other sociodemographic variables, experience of mental illness, emotional reactions, or general information about AD. Dimensions of stigma were highly prevalent in relation to AD. Interventions are needed to reduce the negative effects of stigma.

The impact of stigma on people with mental illness

Article

Mar 2002

Stigma by association and Alzheimer's disease

Article

Feb 2008

Although it is widely assumed that persons with Alzheimer's disease (AD) are victims of stigmatization, little is known about courtesy stigma or stigma by association and AD. Phone interviews were conducted with 61 caregivers of persons with AD in order to assess four dimensions of stigma by association--interpersonal interaction, concealment, structural discrimination and access to social roles. The participants perceived a minimal amount of stigma directed towards themselves but a considerable percentage reported perceptions of stigma regarding the person with AD. Additionally, participants reported high levels of structural discrimination towards the person with AD and towards themselves. It was found that stigma by association related to AD is especially high in dimensions affecting the delivery of services and the lives of the person with AD.

Dementia and the impact of stigma

Jan 2017

Alzheimer's Australia

Alzheimer's Australia. (2017). Dementia and the impact of stigma. Retrieved from https://www.dementia.org. au/files/documents/Dementia-Social-Stigma-Report-2017.pdf

Addressing the Stigma associated with dementia

Jan 2010

Nsw Alzheimer's Australia

Alzheimer's Australia NSW. (2010). Addressing the Stigma associated with dementia. Retrieved from https:// www.dementia.org.au/files/2010NSWAddressingStigmaDiscussionPaper2.pdf

What do the general public really want to know about dementia? A focus group study. Paper presented at the Alzheimer's disease international's 33rd conference

Jan 2018

S Kim
P Werner
A Richardson
K J Anstey

Kim, S., Werner, P., Richardson, A., & Anstey, K. J. (2018). What do the general public really want to know about dementia? A focus group study. Paper presented at the Alzheimer's disease international's 33rd conference, Chicago, USA.

Dementia Stigma Reduction (DESeRvE): Study protocol for a randomized controlled trial of an online intervention program to reduce dementia-related public stigma

Jan 2019

S Kim
P Werner
A Richardson
K J Anstey

Kim, S., Werner, P., Richardson, A., & Anstey, K. J. (2019). Dementia Stigma Reduction (DESeRvE): Study protocol for a randomized controlled trial of an online intervention program to reduce dementia-related public stigma. Contemporary Clinical Trials Communications, 14, 100351. DOI: 10.1016/j.conctc.2019. 100351.

Exploring dementia and stigma beliefs: A pilot study of Australian adults aged 40 to 65 yrs

Jan 2012

L Phillipson
C Magee
S Jones
E Skladzien

Phillipson, L., Magee, C., Jones, S., & Skladzien, E. (2012). Exploring dementia and stigma beliefs: A pilot study of Australian adults aged 40 to 65 yrs. Retrieved from https://www.dementia.org.au/sites/default/files/ 20120712_US_28_Stigma_Report.pdf

Dementia is everybody’s business

Jan 2011

Stollznow Research

StollzNow Research. (2011). Dementia is everybody's business.

Stigma and Alzheimer’s disease: A systematic review of evidence, theory, and methods

P Werner

Werner, P. (2014). Stigma and Alzheimer's disease: A systematic review of evidence, theory, and methods. In P. W. Corrigan (Ed.), The stigma of disease and disability: Understanding causes and overcoming injustices. (pp. 223-244). Washington, DC, US: American Psychological Association.

Dementia-related Stigma and help seeking intentions

S Kim
M E Mortby
K A Anstey

Dementia stigma reduction (DESeRvE) through education and virtual contact in the general public: A multi-arm factorial randomised controlled trial

Abstract

No full-text available

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