Equity, diversity and inclusion in dementia diagnosis: A Canadian perspective
Research shows that racially diverse communities have a higher prevalence of dementia and face a lack of culturally safe carer and community support. Learn more in this research essay from the 2021 World Alzheimer Report.
This commentary is led by the Alzheimer Society of Canada’s Community and Diversity Partnership Manager, Ngozi Iroanyah.
Note that this article originally appeared in World Alzheimer Report 2021: Journey through the diagnosis of dementia (pgs. 235 to 237) from Alzheimer’s Disease International.
Canada, like other western nations, has experienced unprecedented demographic changes in its age-based population. Since 2016, the number of adults over the age of 65 has outnumbered those 0–14 years of age (1). Moreover, there has been an increase in both the rate of immigration and differences in countries of origin for newcomers, resulting in 1 in every 5 Canadians now identifying as foreign born, and 1 in every 5 Canadians also identifying as a visible minority (2). As dementia is poised to impact almost a million Canadians by 2030 (3) focused attention is crucial to understand the needs and experience of these racially diverse communities when accessing dementia care services and programs.
Unlike other western nations, there is little Canadian data or resources available for the needs and experiences of people living with dementia and their carers from racially diverse communities, particularly from a population-level perspective (4,5). Specific studies found that racially diverse communities have a higher prevalence of dementia and face disproportionate challenges due to a lack of culturally safe carer and community support, and poor system-level awareness of their education needs and health-seeking behaviours (4,6). These gaps in knowledge can further exacerbate the burden of care felt in these communities, including increased isolation, stigma and delays in seeking a diagnosis.
Receiving a timely dementia diagnosis has been shown to help decrease the progression of the condition, yet the decision-making process to seek a diagnosis for people experiencing dementia complaints from racialized backgrounds is complex. It operates on cultural and structural levels. Cultural barriers are both knowledge- and society-related. Knowledge-related barriers include misidentification of the causes of dementia to spiritual, psychological, and other physical health or social origins (7,8), beliefs that dementia is part of normal ageing, misinterpreting changes in behaviour and personality, and not perceiving a need to seek a diagnosis or support (9). Society-related cultural barriers can include fear of shame, ostracization, and stigma within families and communities (8,10). Cultural expectations about family carers can create barriers to seeking a diagnosis; they can place a large onus on the family to provide for the needs of elders, thus contributing to delays in seeking a diagnosis (11).
Importantly, cultural barriers do not occur in isolation. They can be strongly influenced by structural barriers that are part of broader social contexts that inform access to healthcare services. Specifically, structural barriers can cause hesitancy engaging with the healthcare system due to systemic discrimination, difficulty navigating health services that are not culturally appropriate, and lack of resources in the language of choice (7,9).
While these studies highlight some barriers experienced by racially diverse communities, more in-depth analysis needs to take place to understand the experiences and barriers faced by physicians providing care to these communities. In Canada, primary care physicians are gatekeepers for those seeking a dementia diagnosis, making this information particularly relevant to physicians’ provision of care. Primary care physicians have been shown to have difficulty with accurately diagnosing dementia when their patients do not speak English or French, or have potential low literacy and education (12). Moreover, many of the widely used assessment tools for the diagnosis of dementia are not culturally appropriate. Education, language, ethnocultural factors can affect performance on neuropsychological testing, leading to false-positives and false-negatives (13,14). Lastly, primary care physicians may have their own biases about dementia. They may have been reluctant to confirm a diagnosis based on assumptions that people do not want to receive a diagnosis due to associated stigma or their own views that a diagnosis was not useful.
The following recommendations can enable a planned and systematic pathway to seeking a diagnosis and accessing supports. Community level recommendations include implementing and encouraging anti-stigma campaigns that are culturally safe and appropriate, along with psychoeducation, vigilant screening, culturally-friendly dementia services, and awareness building (15). For example, community agencies can provide tailored information and support to immigrants and at-risk communities. Interventions targeted at building knowledge and awareness can be customized to the needs of racially diverse groups. These could include multilingual informational pamphlets about dementia and culturally-appropriate services (11).
Clinicians should also be attentive to the subtle signs of possible dementia, including missed appointments or mismanaged chronic conditions (12). To prevent false-positive and false-negative dementia misclassification by the brief cognitive assessments in ethnically diverse groups, clinicians should also consider encouraging older adults to bring a companion or carer to the appointment. They may be in a position to inform the clinician of culturally relevant issues (12), participate in informant-rated cognition and potential test specific biases (13). Informant reports from cultural perspectives can also complement cognitive testing to improve the accuracy of a dementia diagnosis (14).
Incorporating these recommendations into dementia-friendly communities can help to normalize dementia so that individuals and their carers from these communities can be confident in obtaining a timely dementia diagnosis.
As the primary national organization that provides education and support for people living with dementia, the Alzheimer Society of Canada continues to play a crucial role in implementing these recommendations and has taken a more active approach to relationship building and understanding the experiences of ethnically diverse communities is essential. In partnership with the College of Family Physicians of Canada, the Alzheimer Society of Canada launched the first national survey focused on understanding the needs of racially diverse people living with dementia, and a companion survey to family physicians providing care to these communities. Concurrent with the survey, targeted community outreach and awareness raising is occurring within racially diverse communities. Data from the survey will be shared back with the communities to support their own decision-making and advocacy, a step rarely taken but crucial for building those communities’ capacity. Phase two will involve leveraging existing relationships and supports as a starting point, while recognizing the need for co-creation of culture-first (instead of language-first) resources.
As the population of people living with dementia continues to grow and diversify, more data and research will be essential to develop better resources and supports that focus on building knowledge and confidence in communities that have long experienced structural barriers in the healthcare system. This must be the first step in a long-term, multi-year, multimedia strategy to provide dementia care programmes and services.
- Statistics Canada. Age and sex, and type of dwelling data: Key results from the 2016 Census The Daily Statistics Canada Catalogue no. 11-001-X. Stat Canada Cat no 11-001-X [Internet]. 2017 [cited 2021 Jul 9];Ottawa. https://www150.statcan.gc.ca/n1/daily-quotidien/170503/dq170503a-eng.htm
- Statistics Canada. Immigration and ethnocultural diversity: Key results from the 2016 Census. Dly [Internet]. 2017 [cited 2021 Jul 9];(Catalogue no. 11-001-X):1–8. https://www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025b-eng.htm
- Report summary Prevalence and monetary costs of dementia in Canada (2016): a report by the Alzheimer Society of Canada. Heal Promot chronic Dis Prev Canada Res policy Pract. 2016 Oct 1;36(10):231–2.
- McCleary L, Persaud M, Hum S, Pimlott NJ, Cohen CA, Koehn S, et al. Pathways to dementia diagnosis among South Asian Canadians. Dementia [Internet]. 2013 Apr 26 [cited 2021 Jul 9];12(6):769–89. https://journals.sagepub.com/doi/abs/10.1177/1471301212444806
- O’Connor D, Phinney A, Hulko W. Dementia at the Intersections: A unique case study exploring social location. J Aging Stud. 2010 Jan 1;24(1):30–9.
- Co M, Couch E, Gao Q, Mac-Ginty S, Das-Munshi J, Prina M. Access to Health Services in Older Minority Ethnic Groups with Dementia: A Systematic Review [Internet]. Vol. 69, Journal of the American Geriatrics Society. J Am Geriatr Soc; 2021 [cited 2021 Jul 9]. p. 822–34. https://pubmed.ncbi.nlm.nih.gov/33230815/
- Mukadam N, Cooper C, Livingston G. A systematic review of ethnicity and pathways to care in dementia [Internet]. Vol. 26, International Journal of Geriatric Psychiatry. John Wiley & Sons, Ltd; 2011 [cited 2021 Jul 9]. p. 12–20. https://onlinelibrary.wiley.com/doi/full/10.1002/gps.2484
- 8Mukadam N, Cooper C, Livingston G. Improving access to dementia services for people from minority ethnic groups [Internet]. Vol. 26, Current Opinion in Psychiatry. Curr Opin Psychiatry; 2013 [cited 2021 Jul 9]. p. 409–14. https://pubmed.ncbi.nlm.nih.gov/23454888/
- Parker M, Barlow S, Hoe J, Aitken L. 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 [Internet]. Vol. 32, International Psychogeriatrics. Cambridge University Press; 2020 [cited 2021 Jul 9]. p. 611–34. https://www.cambridge.org/core/journals/ international-psychogeriatrics/article/abs/persistent-barriersand-facilitators-to-seeking-help-for-a-dementia-diagnosis-asystematic-review-of-30-years-of-the-perspectives-of-carersand-people-with-dementia/F5A64C2
- Koehn S. ‘It is not a disease, only memory loss’: Exploring the complexity of access to a diagnosis of dementia in a crosscultural sample. exploring the complexity of access to a diagnosis of dementia in a cross-cultural sample. In: Evidence-informed Approaches for Managing Dementia Transitions: Riding the Waves. Academic Press; 2020. p. 29–52.
- Koehn S, McCleary L, Garcia L, Spence M, Jarvis P, Drummond N. Understanding Chinese-Canadian pathways to a diagnosis of dementia through a critical-constructionist lens. J Aging Stud. 2012 Jan 1;26(1):44–54.
- Amjad H, Roth DL, Sheehan OC, Lyketsos CG, Wolff JL, Samus QM. Underdiagnosis of Dementia: an Observational Study of Patterns in Diagnosis and Awareness in US Older Adults. J Gen Intern Med [Internet]. 2018 Jul 1 [cited 2021 Jul 9];33(7):1131–8. https://pubmed.ncbi.nlm.nih.gov/29508259/
- Ranson JM, Kuźma E, Hamilton W, Muniz-Terrera G, Langa KM, Llewellyn DJ. Predictors of dementia misclassification when using brief cognitive assessments. Neurol Clin Pract [Internet]. 2019 Apr 1 [cited 2021 Jul 9];9(2):109–17. https://pubmed.ncbi.nlm.nih.gov/31041124/
- Sayegh P, Knight BG. Assessment and diagnosis of dementia in hispanic and non-hispanic white outpatients. Gerontologist [Internet]. 2013 Oct [cited 2021 Jul 9];53(5):760–9. https://pubmed.ncbi.nlm.nih.gov/23348889/
- Martinez-Ruiz A, Huang Y, Gee S, Jamieson H, Cheung G. Individual risk factors for possible undetected dementia amongst community-dwelling older people in New Zealand. Dementia [Internet]. 2020 Jul 10 [cited 2021 Jul 9];19(3):750–65. https://journals.sagepub.com/doi/abs/10.1177/1471301218786277?journal Code=dema
1 Alzheimer Society of Canada
2 Faculty of Health Sciences, Western University
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Manager, Diversity and Community Partnerships, Alzheimer Society of Canada