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. 2026 Oct 5;41(5):daag146. doi: 10.1093/heapro/daag146

Formal help-seeking intentions for dementia in the Australian public: associations with stigma

Lee-Fay Low 1,✉, Hieu T Le 2, Annica Barcenilla-Wong 3, Lyn Phillipson 4, Meredith Gresham 5,6, Mark Yates 7,8, Caroline Gibson 9, Edwin C K Tan 10,11,12, Amy Tan 13, Michael Camit 14,15, Monica Cations 16, Kate Laver 17
PMCID: PMC13634681  PMID: 42830404

Abstract

To understand dementia stigma and help-seeking intentions amongst middle-aged and older community-dwelling Australians, a cross-sectional online survey was conducted in February 2023 amongst Australian adults aged ≥45 years. The survey collected demographic data, prior experience with people with dementia, dementia-related public stigma, and formal and informal help-seeking intentions for self and family members (modified General Help-Seeking Questionnaire). Multivariable regression models were used to examine factors associated with help-seeking intentions. Data from 1364 participants were analysed (41.4% aged ≥65 years; 60.7% women). Most participants reported that, if they observed signs of dementia, they were likely to seek help from family or friends (70.7% for self, 77.1% for family member) and from health professionals (83.7% for self, 82.3% for family member). Participants were significantly more likely to seek help formally than informally. There were no differences in formal help-seeking intentions for self or family member. Formal help-seeking intentions were associated with age, education, and previous formal dementia information seeking. There were small, significant associations between help-seeking intentions and dementia stigma factors relating to personhood, incapacity, and social distance; however, the direction of association varied when help-seeking was for self or a family member. This study demonstrates that help-seeking intentions amongst Australian adults were associated with demographic factors, prior help-seeking experience, and dementia stigma. Cross-sectional, scenario-based studies of help-seeking intentions may not sufficiently capture the relationship between dementia stigma and help-seeking behaviour. Future campaigns to increase help-seeking for dementia should consider targeting both cognitive and behavioural aspects of dementia stigma.

Keywords: older people, discrimination, dementia stigma, help-seeking, public stigma

Contribution to Health Promotion.

  • When asked in a survey, most middle-aged and older Australians report that they are likely to formally help-seek for dementia

  • There were small, significant associations between help-seeking intentions and dementia stigma factors relating to personhood of people with dementia, incapacity of people with dementia, and maintaining of social distance, however the direction of association varied when help-seeking for self or a family member.

  • Cross-sectional scenario-based help-seeking intention studies might not sufficiently capture the relationship between dementia stigma and help-seeking

  • Future campaigns to increase help-seeking for dementia should consider targeting cognitive and behavioural aspects of dementia stigma

Background

Rates of undiagnosed dementia are high. A systematic review and meta-analysis of 23 studies reported a pooled rate of undetected dementia of 61.7% (95% CI 55.0% to 68.0%) (Lang et al. 2017), and more recent Australian data suggest low rates of documentation of dementia in primary care (Dobson et al. 2023).

Formal help-seeking from a primary care professional, such as a general practitioner (GP), is the crucial first step in obtaining a dementia diagnosis. GPs play an important role in the dementia diagnosis pathway as they are uniquely positioned to recognize cognitive decline and coordinate care, given the continuity and trust inherent in GP–patient relationships (Sethuram et al. 2022, Low et al. 2026). However, there is usually a time gap between first noticing memory, thinking and functional changes which might be signs of dementia and seeking help from a medical professional. For instance, an Australian study (n = 209) reported a gap of 1.9 years (Speechly et al. 2008) and a Chinese study (n = 576) reported a gap of 1.7 years (Zhao et al. 2016). More recently the Australian Dementia Awareness survey (n = 5400) found that 49% of the general public said they would seek help immediately if they had symptoms of dementia, 37% said they would wait, and 14% said they would seek help when the symptoms became obvious to others (Australian Institute of Health and Welfare 2024).

Based on conceptualizations of help-seeking intentions for mental health (White et al. 2018), we define help-seeking for dementia as a conscious plan by the person with symptoms or a family member to communicate changes in thinking, function or behaviour, which might be signs of dementia in an attempt to obtain support, advice and assistance. Help-seeking for dementia is a non-linear process that can involve noticing changes as a problem, obtaining information around the changes (e.g. internet search), informally seeking support from friends and family and formally consulting a health professional often a GP (Low et al. 2025). A distinction should be made between help-seeking intentions as measured by studies which ask people without dementia hypothetically what they would do if they encountered symptoms which might be dementia (Phillipson et al. 2015), and help-seeking behaviours typically measured during retrospective studies asking people with cognitive impairment or dementia, or their careers, about their help-seeking experiences. The limitation of hypothetical studies of help-seeking intentions is likely affected by how the dementia symptoms are presented and social desirability and may not reflect real-life behaviour. Whereas retrospective reports of behaviours might be affected by inaccurate recall, confirmation bias and do not capture people who did not help-seek successfully to diagnosis.

One of the causes of help-seeking delays is not recognizing that changes might be dementia. Poorer knowledge of dementia is reported by almost all studies as a barrier to help-seeking (Werner et al. 2014, Parker et al. 2020) and experience with dementia is associated with higher help-seeking intentions (Mills et al. 2023). Greater threat appraisal (i.e. perception that the symptoms are problematic and not ‘normal ageing’) is also associated with greater likelihood of dementia help-seeking intentions (Midden and Mast 2022) and help-seeking behaviour (Jiao et al. 2023). People with dementia and carers sought help when symptoms become more severe and it is more apparent that there is a problem (Gregg et al. 2021). People with younger-onset dementia take longer to have their first assessment than people with late onset dementia, which may be due to misinterpretation of symptoms and lower threat appraisal (Chiari et al. 2022).

Dementia help-seeking is commonly initiated by family carers (Werner et al. 2014) because they are more likely to recognize the symptoms, have higher threat appraisal, are less afraid or avoidant of a diagnosis, and/or have greater cognitive capacity to search for information and navigate the healthcare system (Low et al. 2025). A systematic review including 24 retrospective studies involving carers found that carers were reluctant to seek help without the support and agreement of family and friends (Parker et al. 2020). Disagreements over the cause or seriousness of changes and family conflict were inhibitors to help-seeking (Parker et al. 2020). Carers also delayed help-seeking when faced with other challenges such as personal or family problems, or existing caring responsibilities (Parker et al. 2020).

Stigma (i.e. negative emotions and beliefs around having dementia) is often reported as a barrier to help-seeking (Parker et al. 2020). A systematic review (n = 17 qualitative studies) highlighted that stigma delays dementia help-seeking, and stigma is influenced by family, community and the attitudes of healthcare professionals (Brigiano et al. 2025). Consistent with this qualitative data, Australian (n = 611) and Japanese (n = 380) quantitative studies reported that members of the public with lower levels of dementia stigma had higher informally and formal help-seeking intentions for dementia (Phillipson et al. 2015, Noguchi et al. 2025). Stigma affects help-seeking intentions because people are afraid of being treated differently if they have dementia (i.e. anticipated stigma reflected in fear of discrimination or labelling questions) and are afraid of having dementia (i.e. self-stigma, reflected in personal avoidance of people with dementia questions) (Werner et al. 2021). The relationship between stigma and help-seeking is likely moderated by culture, with migrants in Anglophone countries particularly feeling shame and embarrassment around having dementia and wanting to keep diagnoses secret (Allam et al. 2023, Philip et al. 2024).

Antithetically, higher dementia knowledge is not consistently associated with lower dementia stigma. Health students with greater dementia knowledge than other students did not differ on level of dementia stigma (Błaszkiewicz et al. 2024). Further, older people have higher dementia stigma than younger people, and health professionals have higher dementia stigma compared with those without a health background (Piver et al. 2013, Brookman et al. 2025). This might be because dementia knowledge might affect the cognitive aspects of dementia stigma, it does not necessarily change the affective (e.g. fear) and behavioural aspects (e.g. social distancing). Since older people and health professionals are more likely to have interacted with, or cared for, people with dementia, it might be that these experiences may have increased fear and unease with people with dementia. In contrast curated positive interactions with people with dementia which have been shown to decrease stigma (Phillipson et al. 2019, Li et al. 2026). Systems level barriers to help-seeking are not knowing where to seek help, difficulties getting GP appointments, financial costs, transport or distance, language for non-English speakers, and GPs being reluctant to diagnose dementia (Parker et al. 2020, Low et al. 2025).

The aim of this study was to investigate help-seeking intentions of the Australian public. This study was conducted to inform the design of a public help-seeking campaign to promote help-seeking for a dementia in Western Sydney and Adelaide as part of the Face Dementia project. This project also had primary care intervention arms in Western Sydney and Western Victoria.

We hypothesize:

  1. Participants will be more willing to help-seek informally with family and friends than formally with health professionals

  2. Participants will be more likely to formally help-seek for a family member than themselves

  3. Participants with higher levels of dementia stigma, (particularly fear and discomfort and exclusion/avoidance) will have lower formal help-seeking intentions for self or for a family member after accounting for demographic and experience with dementia factors

Additionally, we wanted to check if our intervention regions had different dementia help-seeking intentions or stigma (supplementary analysis).

Methods

A cross-sectional English-language online survey was conducted in February 2023. Participants were recruited using Qualtrics Survey Panels which consisted of participant samples sourced from actively managed, double opt-in market research panels. Participants on these panels had previously consented to participate in market research for a small incentive (e.g. gift cards, airline miles). Qualtrics sample partners randomly select respondents for surveys that they may be eligible to take part in. We aimed to recruit 1000 Australian adults aged 45 years and over, and oversample participants living within the geographic boundaries of our future intervention regions (i.e. Western Sydney, Western Victoria and Adelaide Primary Health Networks (PHNs), 200 from each).

Variables collected in the survey

Demographic information, prior exposure to people living with dementia, sources of dementia information, dementia stigma and help-seeking intentions were collected. A complete version of the survey questionnaire is presented in Supplementary Appendix 1.

Demographic information

Demographic information collected included: age, postcode, sex, country of birth, language spoken at home other than English, Aboriginal or Torres Strait Islander background, highest level of education, and household income. Age was captured in categories (18–24, 25–34, 35–44, 45–54, 55–64, and ≥65 years). Postcode was used to define rurality as major city or non-major city. Country of birth was classified as Australia or overseas. Highest level of education was categorized as primary/secondary school, TAFE/certificate/diploma, or university. Household income was categorized as ≤$25 000; $25 001–$50 000; $50 001–$75 000; $75 001–$100 000; and ≥$100 001.

Help-seeking intentions

Help-seeking intentions were assessed using a modified General Help-Seeking Questionnaire (Wilson et al. 2005), previously adapted for dementia (Phillipson et al. 2015). Participants were asked to consider two scenarios: (i) seeking help for themselves if they experienced forgetfulness and were concerned these were early signs of dementia, and (ii) seeking help on behalf of a partner or close family member showing early signs of dementia. For each scenario, participants rated their likelihood of seeking help from a range of people or organizations using a 5-point Likert scale (1 = extremely likely to 5 = extremely unlikely). An item assessing intention ‘not’ to seek help were included for both scenarios, and an additional item on delaying help-seeking was included self-focused scenario. Delaying help-seeking was not included as an outcome category for the second scenario in error. We chose not to present a vignette describing changes that might be dementia to shorten the survey, as our previous research had shown extremely high (82%) identification of dementia from a vignette (Low and Anstey 2009).

For both scenarios, formal help-seeking was categorized as the likelihood of seeking help from health professionals (e.g. counsellor, psychologist, psychiatrist, doctor/GP, or telephone helplines such as the National Dementia Helpline). Informal help-seeking was defined as seeking help from family or friends, including partners, parents, other relatives, or non-related friends. Likert-scale responses were categorized as ordinal variables: unlikely to seek help (scores 4–5), undecided (score 3), and likely to seek help (scores 1–2).

Prior experience with people living with dementia

Participants were asked about their prior experience with people living with dementia (e.g. if they knew someone with Alzheimer’s disease (AD) or another dementia, if they had been the primary carer for someone with AD or another dementia, or if they themselves had AD or another type of dementia). As this study aimed to investigate help-seeking intentions prior to dementia diagnosis, participants who reported having dementia (n = 15) were excluded from the analysis.

Prior searching for information about dementia

Participants were asked whether they had ever actively tried to find information about memory loss or dementia. Those who responded ‘yes’ were further asked where they looked for information, including informal sources (e.g. family or friends, traditional media [TV/radio], the internet and social media, Dementia Australia, or the National Dementia Helpline) and formal sources (e.g. GPs, local doctors, or medical specialists).

Public dementia stigma

The survey included the Dementia Public Stigma Scale; a reliable and valid 16-item scale scored on a seven-point Likert scale (1 = strongly disagree to 7 = strongly agree), designed in Australia to measure stigma around dementia in the general public (Kim et al. 2022). This scale consists of five factors. Factor one—‘fear and discomfort’ measures fear, comfort and confidence around people with dementia. Factors two to four—‘incapacity and loss’, ‘acknowledgement of personhood’, and ‘burden’ reflect the cognitive aspects of stigma. ‘Incapacity and loss’ and ‘burden’ measure beliefs aligning to stereotypes about people living with dementia, and beliefs that they are a burden to society and their families and need a lot of care. ‘Acknowledgement of personhood’ measures positive perceptions of people with dementia (these are reverse coded). Factor five, ‘Exclusion’—measures discriminatory behavioural intent such as avoiding and ignoring people with dementia (Kim et al. 2022). Total and subscale scores were calculated according to the published factor structure. Higher scores reflect higher levels of dementia stigma. Description of dementia stigma scale is presented in Table 1.

Table 1.

Description of dementia stigma scale.

Factor Dementia stigma itema
Emotional factor
 Factor 1: Fear and discomfort I feel confident around people with dementiab
I am comfortable touching people with dementiab
I feel relaxed around people with dementiab
I am afraid of people with dementia
Cognitive factor
 Factor 2: Incapacity and loss People with dementia should always be supervised
People with dementia are unpredictable
People with dementia are very much like children
People with dementia are incapable of making any personal decisions
People with dementia are no longer themselves because they have dementia
 Factor 3: Acknowledgement of personhood People with dementia can enjoy lifeb
People with dementia can feel when others are kind to themb
It is possible to enjoy interacting with people with dementiab
 Factor 4: Burden People with dementia are a burden to their family
People with dementia are a burden on the healthcare system
Behavioural factor
 Factor 5: Exclusion I would exclude people with dementia from activities
I would ignore people with dementia
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aEach item was scored on a seven-point Likert scale (1 = strongly disagree to 7 = strongly agree). Higher scores indicate greater stigma.

bThese item scores were reverse coded so that higher values reflect higher stigma.

Statistical analysis

Participant characteristics were summarized descriptively using proportions for categorical variables and medians with corresponding interquartile ranges for continuous variables.

For hypotheses 1 and 2, McNemar’s χ2 test was used to compare paired proportions as responses were measured within the same participants. For hypothesis 3, univariate ordinal logistic regression models were used to examine the association between dementia stigma scale scores and help-seeking intentions. Multivariable ordinal logistic regression models were then conducted to adjust for other stigma subscales and demographic factors. Age, sex, highest level of education, language spoken at home, experience with people living with dementia, the five factors of the Dementia Stigma Scale, and help-seeking information sources were included a priori in the final models based on prior literature (Noguchi et al. 2025) and clinical relevance.

In ordinal logistic regression models, the proportional odds assumption was evaluated using likelihood ratio tests (Liu et al. 2023). Under the assumption, a single common odds ratio is estimated for each predictor across all cumulative splits of the ordered outcome (i.e. assuming the effect of a predictor is constant across thresholds of the outcome). When this assumption was violated, partial proportional odds models were fitted using the VGAM R package (Khan et al. 2025), allowing regression coefficients to vary across cumulative dichotomizations of the outcome (e.g. lower versus higher categories at each threshold). Variance inflation factors (VIFs) were examined to assess multicollinearity amongst covariates, with VIF values <5 indicating low multicollinearity (Kim 2019). Proportional odds models were fitted using the ordinal R package (Christensen 2025). All statistical analyses were conducted using R version 4.3.0. Subgroup analysis was conducted to examine whether there were differences between the selected PHNs and other regions in Australia.

Ethics approval

This study was approved by the University of Sydney Human Research Ethics Committee [HREC 2022/689].

Results

Participant characteristics

A total of 1364 people without dementia responded to the survey. Just under half were aged over 64 years (41.4%), female (60.7%), and living in major cities (73.3%). Overall, 36.5% reported no prior experience with people with dementia, and 20.0% had previously actively sought information about dementia. Additional participant characteristics are presented in in Table 2.

Table 2.

Participant characteristics.

Characteristics N = 1 364a
Age (years)
 45–54 402 (29.5%)
 55–64 397 (29.1%)
 Above 64 565 (41.4%)
Sex
 Female 828 (60.7%)
 Male 532 (39.0%)
 I prefer not to answer 4 (0.3%)
Rurality
 Major city 1000 (73.3%)
 Not major city 364 (26.7%)
State/territory
 Australian Capital Territory 11 (0.8%)
 New South Wales 404 (29.6%)
 Queensland 187 (13.7%)
 South Australia 289 (21.2%)
 Tasmania 29 (2.1%)
 Victoria 365 (26.8%)
 Western Australia 79 (5.8%)
Aboriginal and/or Torres Strait Islander 32 (2.3%)
Country of birth
 Australia 1054 (77.3%)
 Others 310 (22.7%)
Non-English language spoken at home 125 (9.2%)
Highest level of education
 Primary/Secondary school (high school) 530 (38.9%)
 TAFE/certificate/diploma 450 (33.0%)
 University (undergraduate or postgraduate) 382 (28.0%)
 Unknown 2
Income
 $25 000 or less 167 (12.2%)
 $25 001–$50 000 397 (29.1%)
 $50 001–$75 000 260 (19.1%)
 $75 001–$100 000 206 (15.1%)
 $1 000 001 or more 334 (24.5%)
Prior experience with people living with dementia
 Never known anyone with dementia 498 (36.5%)
 Not primary carer 692 (50.7%)
 Primary carer 174 (12.8%)
Dementia stigma scale
 Factor 1: Emotion (fear/discomfort) 11.5 (4.9)
 Factor 2: Cognitive (incapability) 22.5 (5.7)
 Factor 3: Cognitive (personhood) 7.7 (3.3)
 Factor 4: Cognitive (burden) 6.2 (3.0)
 Factor 5: Behaviours (exclusion) 4.2 (2.4)
Previous information seeking about dementia
 Only formal sources (GPs, local doctors, or medical specialists) 204 (15.0%)
 Only informal sources 284 (20.8%)
  Family or friends 172 (12.6%)
  Traditional media (TV/radio) 42 (3.1%)
  Internet and social media 386 (28.3%)
  National dementia helpline 193 (14.1%)
 No previous information-seeking 876 (64.2%)
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a n (%); Mean (SD).

Figure 1 presents participants’ help-seeking intentions for themselves and for family members. For both help-seeking scenarios, most participants reported being likely to seek help informally from family or friends (n = 964, 70.7% for self, n = 1036, 76.0% for family member) and formally from health professionals (n = 1141, 83.7% for self, n = 1122, 82.3% for family member). In contrast, ∼10% of participants indicated they were unlikely to seek help in both scenarios.

Figure 1.

Alt-text: Stacked bar chart of help-seeking intentions (likely, undecided, unlikely, unknown) across formal, informal, delay, and not-seeking categories, for oneself and for a family member. Most participants reported being likely to seek help informally (70.7% for self, 76.0% for family member) and formally (83.7% for self, 82.3% for family member), while about 10% were unlikely to seek help in both scenarios.

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Participant help-seeking intentions for themselves and for family members.

Informal help-seeking from family and friends in comparison to formal help-seeking from health professionals

Participants were significantly more likely to intend to seek help solely from health professionals than from family and friends for both themselves (McNemar’s χ2(1) = 91.94, P < .001) and for a family member (McNemar’s χ2 (1) = 27.34, P < .001) (Supplementary Figure S1). When help-seeking for themselves, 238 (17.4%) participants reported being likely to seek help only from health professionals but not from family and friends, compared with 69 (5.1%) participants who reported the opposite pattern. Similarly, for help-seeking for a family member, 161 (11.8%) participants reported being likely to seek help only from health professionals but not from family and friends, compared with 79 (5.8%) participants who reported the opposite pattern.

Formal help-seeking intentions for oneself in comparison to for a family member

There was no significant difference in intention to solely seek help from health professionals for a family member compared with oneself (McNemar’s χ2(1) = 0.37, P = .545). Specifically, 83 (6.1%) participants reported being likely to seek help for a family member but not for themselves, compared with 92 (6.7%) participants who reported being likely to seek help for themselves but not for a family member.

Relationship between public stigma and formal help-seeking intentions

Help-seeking intentions for oneself

Demographic factors were found to be associated with help-seeking intentions for oneself. Participants who were likely to seek help from health professionals had lower education, were more likely to have had previously sought dementia information from formal sources (OR = 0.34; 95% CI: 0.17–0.67).

Dementia stigma demonstrated a consistent ordinal relationship with formal help-seeking intentions, except for beliefs that people with dementia are incapable (stigma factor 2) (Fig. 2). Further details on the univariable associations between each dementia stigma factor and help-seeking intentions for oneself are presented in Supplementary Table S1.

Figure 2.

Alt-text: Forest plot showing univariable associations between five dementia stigma factors (emotion/fear-discomfort, cognitive/incapability, cognitive/personhood, cognitive/burden, and behaviours/exclusion) and four help-seeking outcomes (health professionals, family/friends, no help-seeking, delay help), separately for intentions regarding oneself and on behalf of family members. Dementia stigma demonstrated a consistent ordinal relationship with formal help-seeking intentions, except for beliefs that people with dementia are incapable (stigma factor 2).

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Univariable associations between dementia stigma factors and help-seeking intentions for oneself and on behalf of family members.

The associations between public stigma, demographic factors, and all help-seeking intentions for oneself are presented in Fig. 3. After adjusting for covariates, dementia stigma remained significantly associated with formal help-seeking intentions. Participants who reported being likely to seek help from health professionals had weaker beliefs that people with dementia are incapable (stigma factor 2; OR = 0.93; 95% CI: 0.90–0.96), greater negative perceptions of the personhood of people with dementia (factor 3; OR = 1.12; 95% CI: 1.06–1.18), and greater endorsement of social distance items (factor 5; OR = 1.13; 95% CI: 1.05–1.22).

Figure 3.

Alt-text: Forest plots showing multivariable associations between sociodemographic variables, dementia stigma factors, and information sources with four help-seeking outcomes for oneself (family/friends, health professionals, delayed help, no help-seeking). Dementia stigma remained significantly associated with formal help-seeking: likelihood of seeking help from health professionals was linked to weaker beliefs that people with dementia are incapable, greater negative perceptions of personhood, and greater endorsement of social distance.

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Factors associated with help-seeking intentions for oneself.

Examining the relationship between stigma and informal help-seeking, higher fear and discomfort with dementia (factor 1) was associated with greater likelihood of seeking help from family or friends (OR = 1.03; 95% CI: 1.00–1.07) and lower likelihood of delaying help-seeking (OR = 0.96; 95% CI: 0.93–0.98). Stronger beliefs that people with dementia are a burden (factor 4) was associated with greater likelihood of seeking help from family or friends (OR = 1.09; 95% CI: 1.04–1.14) and lower likelihood of delaying help-seeking (OR = 0.95; 95% CI: 0.91–0.99). Greater endorsement of social distance items (factor 5) was associated with increased likelihood of seeking help from family or friends (OR = 1.12; 95% CI: 1.05–1.19) and lower likelihood of not seeking help (OR = 0.93; 95% CI: 0.86–0.99). Full results are presented in Supplementary Table S2 to S5.

Help-seeking intentions for a family member

Demographic factors were found to be associated with help-seeking intentions for a family member. Participants who were willing to seek help for a family member from health professionals were more likely to have a university degree (OR = 1.64; 95% CI: 1.09–2.49). People aged ≥65 years were less likely to seek help from family or friends (OR = 0.89; 95% CI: 0.82–0.96). Participants with a university education were more likely to report not seeking help compared with those with primary or secondary education (OR = 1.66; 95% CI: 1.14–2.43). Participants who were not primary carers were also more likely to report not seeking help (OR = 1.65; 95% CI: 1.18–2.29) compared with those who did not know anyone with dementia, although they were also more likely to seek help from family or friends (OR = 1.46; 95% CI: 1.07–2.00). In contrast, people who had previously sought dementia information from formal sources were more likely to seek help from health professionals (OR = 3.09; 95% CI: 1.54–6.17). Full data are presented in Supplementary Table S7 to S9.

Dementia stigma demonstrated a consistent ordinal relationship and was significantly associated with formal help-seeking for a family member (Fig. 2 and Supplementary Table S6). After adjustment for other factors, stronger beliefs that people with dementia are incapable (factor 2; OR = 1.04; 95% CI: 1.01–1.07) and lower stigma related to social distancing (factor 5; OR = 0.89; 95% CI: 0.82–0.96) were associated with a higher likelihood of seeking help from health professionals for a family member (Fig. 4).

Figure 4.

Alt-text: Forest plots showing multivariable associations between sociodemographic variables (age, sex, language, education, prior dementia exposure) and information sources with three help-seeking outcomes on behalf of a family member (family/friends, health professionals, no help-seeking). Stronger beliefs that people with dementia are incapable and lower stigma related to social distancing were associated with a higher likelihood of seeking help from health professionals for a family member.

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Factors associated with help-seeking intentions for a family member.

For informal and other help-seeking intentions, associations with stigma subscales were inconsistent. Stronger beliefs that people with dementia are incapable (factor 2) was associated with greater likelihood of seeking help from family or friends (OR = 1.05; 95% CI: 1.02–1.08). Greater perceptions that people with dementia are a burden (factor 4) was associated with a decreased likelihood of not seeking help (OR = 0.93; 95% CI: 0.88–0.99). Greater endorsement of social distancing (factor 5) was also associated with lower likelihood of seeking help from family or friends (OR = 0.91; 95% CI: 0.85–0.97).

Supplementary analysis on regional differences on characteristics and stigma

Participants from selected PHN regions (Western Sydney, Western Victoria, and Adelaide) showed similar help-seeking intentions and demographic and stigma characteristics to participants from other areas of Australia, except that mean scores (SD) for dementia stigma factor 2 (incapacity and loss) were slightly lower in these regions (P < .001) (Supplementary Table S10).

Discussion

This study aimed to examine dementia help-seeking intentions in middle-aged and older Australians. We found high rates of formal help-seeking intentions, and contrary to our hypothesis, Australians were significantly more likely to intend to seek help from a health professional rather than from family and friends. There were no differences in our sample the likelihood of help-seeking for oneself or a family member. Some aspects of dementia stigma (i.e. viewing people with dementia as incapable, not seeing the positive characteristics of people with dementia, or endorsing social distance behaviours towards people with dementia) were associated with lower likelihood of formal help-seeking. This study identified that education, speaking a language other than English at home and previously seeking information about dementia, were associated with higher help-seeking intentions.

Our finding that more participants said they would help-seek from a health professional than from family and friends was unexpected, given considerable previous research on help-seeking behaviours suggesting that the first preference when cognitive decline is noticed is to help-seek from close relatives before speaking to a GP (Werner et al. 2014, Low et al. 2025). This might be because our survey scenario suggested that the problem was dementia, giving the problem a medical label, whereas in the real world the cause of observed changes is often attributed to ageing, stress, or mental health issues, which might require discussion with or support of family and friends. The findings emphasize the important role that primary care professionals have in the dementia help-seeking pathway.

We found no difference in willingness in formal help-seeking intentions for self or a family member. Dementia is the second most feared condition amongst Australian hospital outpatients (Watson et al. 2023), so we expected for people to be more reluctant to help-seek for themselves than for a family member because of anticipated stigma (Rosin et al. 2020). This could be because the scenario as described in the survey did not elicit anticipated stigma because participants were not thinking further around the consequences of having dementia. Further, participants might have considered their own family dynamics when considering help-seeking with family or friends such as whether those friends would be supportive or helpful; such family dynamics have been shown to impact informal help-seeking for mental health (Hammond et al. 2025). These findings highlight the limitations of scenario-based help-seeking intention surveys in accurately predicting a participant’s future behaviour. This has been a criticism of hypothetical methodologies when studying public attitudes towards dementia (Nguyen and Li 2020).

While there were no differences in help-seeking intentions for self and a family member, the associations between some aspects of stigma and help-seeking for self or family member were in the opposite direction. Participants who were likely to formally help-seek for themselves had weaker beliefs that people with dementia are incapable (factor 2), greater negative perceptions of the personhood of people with dementia (factor 3), and greater endorsement of social distance items (factor 5). Participants who were likely to formally help-seek for a family member had stronger beliefs that people with dementia are incapable (factor 2), and lower endorsement of social distance items (factor 5). We note that these effect sizes were small. Our previous Australian work and a Japanese study that found that fear of dementia-related discrimination was associated with lower formal help-seeking intentions (Phillipson et al. 2015, Noguchi et al. 2025). These results could be interpreted to mean that participants with lower anticipated stigma for themselves have higher formal help-seeking intentions compare with those with higher anticipated stigma, though we did not measure anticipated stigma directly. In contrast, stronger views that people with dementia are incapable and require help and stronger willingness to include people with dementia is associated with help-seeking for family members. Despite the difficulties with interpretation, these findings suggest that cognitive and behavioural aspects of public dementia stigma should be addressed in order to increase dementia diagnosis rates. Reducing dementia-related stigma should therefore extend beyond awareness and knowledge-based campaigns, to increasing positive attitudes around the personhood of people with dementia and changing community attitudes around social distance towards people with dementia. Campaigns might include facilitated positive interactions with people living with dementia (Phillipson et al. 2019) and positive media depictions of people living with dementia (Winter et al. 2025).

Participants with lower education were more likely to intend to formally help-seek for themselves and less likely to formally help-seek for a family member. These results are surprising as we expected that education would have the same association with help-seeking for self and a family member, with lower education associated with lower willingness to help-seek (Werner et al. 2014). We found that participants who had previously sought dementia information from a formal source (e.g. GPs, specialists) were less likely to formally seek help for themselves and were also more likely to delay or not seek help at all, but more likely to formally help seek for a family member. We do not have information about the outcome of their previous formal information seeking attempt, and how this has affected their willingness to help-seek for self or a family member. One interpretation is that their previous formal help-seeking efforts might have been negative, consistent with research indicating that GPs might dismiss concerns and are reluctant to diagnose dementia (Parker et al. 2020, Low et al. 2025) however they still believe that they should formally help-seek for a family member. International studies have indicated the need for further GP training in dementia (Sideman et al. 2023). The results also suggest the need to support people to effectively seek help formally for dementia, by indicating who they should seek help from, and providing a checklist of symptoms to assist with communication.

A strength of this study was the geographically diverse survey panel with less bias towards people with an interest and knowledge of dementia. However, we had a lower proportion of participants who spoke a non-English language at home (9.2%) compared with the 22.8% of Australians identified in the 2021 census as being from a non-English speaking background (Australian Bureau of Statistics 2022). Participants with low English proficiency would be less likely to volunteer for panel surveys, and their low participation rate might mean that the dementia help-seeking might be overestimated, and dementia stigma underestimated.

Women are also over-represented in this study (60.7%), which may underestimate the level of stigma found in the sample, as women have also been found to hold significantly lower levels of dementia-related stigma compared with males (Australian Institute of Health and Welfare 2024). The survey did not ask about delaying help-seeking for a family member in error. This was a missed opportunity to explore the demographic and stigma-related factors associated with delaying help-seeking for others. In addition, social desirability might have led to underestimation of the true level of stigma present (Australian Institute of Health and Welfare 2024). The anonymous format might reduce this social desirability bias (Joinson 1999).

Potential limitations of the hypothetical methodology have been discussed above. We were not able to adequately explore the complex relationship between stigma and help-seeking intentions through this cross-sectional hypothetical survey design. Future dementia help-seeking research could attempt to overcome the weaknesses of hypothetical scenario and retrospective designs by identifying people with concerns that they themselves or a family member might have dementia and follow their help-seeking journey while measuring anticipated and self-stigma over time.

Conclusion

Help-seeking intentions amongst Australian adults were associated with dementia stigma, as well as age, education and past dementia information seeking. However, the relationships between these variables and help-seeking are complex and require further explanation. Campaigns to increase help-seeking for dementia may consider addressing dementia stigma particularly by showing that people with dementia keep their personhood (i.e. that they are still people) and promote inclusion of people with dementia. Health practitioner dementia training is required, and resources might be made available to support effective help-seeking.

Supplementary Material

daag146_Supplementary_Data
daag146_supplementary_data.zip (133.6KB, zip)

Acknowledgements

We thank the interview and co-design workshop participants. We thank Bobby Redman, a dementia advocate, for her contributions to the conceptualization, investigation, resources, and supervision of this study.

Contributor Information

Lee-Fay Low, School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building, Camperdown, Sydney, New South Wales 2006, Australia.

Hieu T Le, School of Pharmacy, Faculty of Medicine and Health, The University of Sydney, Pharmacy and Bank Building A15, Science Road, Camperdown, Sydney, New South Wales 2006, Australia.

Annica Barcenilla-Wong, School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building, Camperdown, Sydney, New South Wales 2006, Australia.

Lyn Phillipson, School of Health and Society, Faculty of Arts, Social Sciences and Humanities, University of Wollongong, Northfields Ave Wollongong, Wollongong, New South Wales 2522, Australia.

Meredith Gresham, School of Health and Society, Faculty of Arts, Social Sciences and Humanities, University of Wollongong, Northfields Ave Wollongong, Wollongong, New South Wales 2522, Australia; Centre for Healthy Brain Ageing, Discipline of Psychiatry and Mental Health, School of Clinical Medicine, The University of New South Wales, High Street, Kensington, Sydney, New South Wales 2033, Australia.

Mark Yates, School of Medicine, Faculty of Health, Deakin University, Locked Bag, Geelong, Victoria 3220, Australia; Department of Geriatric Medicine, Grampians Health, 1 Drummond Street North Ballarat, Ballarat, Victoria 3350, Australia.

Caroline Gibson, School of Medicine, Faculty of Health, Deakin University, Locked Bag, Geelong, Victoria 3220, Australia.

Edwin C K Tan, School of Pharmacy, Faculty of Medicine and Health, The University of Sydney, Pharmacy and Bank Building A15, Science Road, Camperdown, Sydney, New South Wales 2006, Australia; Pharmaceutical Policy Node, Charles Perkins Centre, The University of Sydney, Building D17, 17 Johns Hopkins Drive, Camperdown, Sydney, New South Wales 2006, Australia; Kolling Institute, Faculty of Medicine and Health, The University of Sydney and the Northern Local Health District, 10 Westbourne Street, St Leonards, New South Wales 2065, Australia.

Amy Tan, School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building, Camperdown, Sydney, New South Wales 2006, Australia.

Michael Camit, Health Literacy Unit, Multicultural Services, South Western Sydney Local Health District, 52 Scrivener Street, Warwick Farm, New South Wales 2017, Australia; Schools of Public Health and Management, University of Technology Sydney, Building 10, 235 Jones Street, Ultimo, Sydney, New South Wales 2007, Australia.

Monica Cations, College of Education, Psychology and Social Work, Flinders University, Sturt Road, Bedford Park, Adelaide, South Australia 5042, Australia.

Kate Laver, College of Nursing and Health Sciences, Flinders University, Sturt Road, Bedford Park, Adelaide, South Australia 5042, Australia.

Author contributions

Lee-Fay Low (Conceptualization, Funding acquisition, Investigation, Project administration, Supervision, Validation, Writing—review & editing), Hieu T. Le (Data curation, Formal analysis, Methodology, Visualization, Writing—original draft), Annica Barcenilla-Wong (Data curation, Formal analysis, Investigation, Methodology, Project administration, Resources, Writing—original draft), Lyn Phillipson (Conceptualization, Data curation, Investigation, Project administration, Writing—review & editing), Meredith Gresham (Conceptualization, Investigation, Methodology, Project administration, Writing—review & editing), Mark Yates (Conceptualization, Methodology, Project administration, Validation, Writing—review & editing), Caroline Gibson (Conceptualization, Investigation, Project administration, Validation, Writing—review & editing), Edwin C.K Tan (Conceptualization, Investigation, Methodology, Validation, Writing—review & editing), Amy Tan (Conceptualization, Formal analysis, Investigation, Methodology, Resources, Writing—original draft), Michael Camit (Conceptualization, Investigation, Methodology, Validation, Writing—review & editing), Monica Cations (Conceptualization, Data curation, Investigation, Project administration, Resources, Writing—review & editing), and Kate Laver (Conceptualization, Investigation, Methodology, Project administration, Resources, Writing—review & editing)

Supplementary material

Supplementary material is available at Health Promotion International online.

Conflicts of interest

None declared.

Funding

This work was supported by the Medical Research Future Fund (MRFF) Dementia, Ageing and Aged Care Mission Projects under Grant number 2015770.

Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

daag146_Supplementary_Data
daag146_supplementary_data.zip (133.6KB, zip)

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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