Dementia is a progressive decline of mental functions. It affects memory, thinking ability, behaviour, and emotions (Dening & Sandilyan, 2015), and it is commonly manifested with age. Due to the increasing number of people ageing outside their country of origin, dementia is an emerging challenge within migration contexts (Canevelli et al., 2018).
The term “dementia” encompasses different neuropathologic changes, in most of the cases on a neurodegenerative basis, which correspond to different symptoms and associated conditions. The leading cause of dementia worldwide is Alzheimer Disease (AD), which occurs when an abnormal deposition of proteins damages neurons. In so-called vascular dementia, symptoms are caused by insufficient blood flow in the brain. The neurodegenerative and vascular changes often coexist, leading to mixed (or multifactorial) dementia. Several other conditions can manifest with dementia, such as Lewy Body Dementia, Frontotemporal dementia, Huntington disease, and Creutzfeldt-Jakob syndrome, to mention the most prevalent (Dening & Sandilyan, 2015).
Dementia causes a progressive inability to perform everyday tasks; affected individuals therefore need increasing support from family members and professional caregivers to complete basic functions and tasks. In late stages, dementia can lead to death, often due to increased vulnerability to infections (Brunnström & Englund, 2009).
There is no cure for dementia, but medications can be used to control the symptoms of the condition. A healthy lifestyle may reduce the risk of developing the condition and associated symptoms. Elements of a healthy lifestyle that can help prevent symptoms of the condition include quitting smoking, being socially and physically active, controlling blood pressure, and having a healthy diet (Livingston et al., 2017). The most significant risk factor for developing dementia is age (Dening & Sandilyan, 2015) with low socio-economic status described as an additional risk factor (Fischer et al., 2009; Nakahori et al., 2018). Alternatively, high socioeconomic status is described as a protective factor (Koster et al., 2005).
Cultural aspects of diagnosis and management
The way patients and caregivers experience dementia is influenced by personal understandings of the condition, which, in turn, is affected by health literacy and cultural beliefs. Understanding of dementia shapes needs and expectations of patients and family members related to treatment of the condition and other co-occurring conditions. As part of a patient-centred approach health practitioners therefore need to consider the complex factors that influence patients’ understandings of and behaviours related to dementia when providing support.
While in western cultures dementia is explained predominantly as a neuropsychiatric condition, other cultures have developed other explanatory models. For example, in certain contexts, dementia is perceived as a normal consequence of ageing, a point of view that leads to delay help-seeking behaviours. Other perspectives explain dementia as a spiritual experience (such as the consequence of witchcraft or other evil spiritual influences), potentially resulting in stigma for the patient and his/her family (van Wezel et al., 2018). Educational interventions aimed at improving health literacy are essential to promote early diagnosis and to guarantee proper support to patients and caregivers (Brooke, Cronin, Stiell, & Ojo, 2018). Indeed, when dementia is understood as a normal consequence of ageing, family members might not see the need for seeking the help of health workers. When dementia is seen as a spiritual experience, the stigma may lead the family to hide the affected person from the eyes of the community (van Wezel et al., 2018).
Evaluating cognitive decline, which informs diagnosis of dementia, can be complicated by language barriers and the use of screening tools that may not be well calibrated for patients of different cultural backgrounds. The Mini-Mental State Examination (MMSE), a scale commonly used in western countries for such a purpose, has been proven to be less effective in measuring cognitive decline among immigrants and ethnic minorities. This suggest that cross-culturally adapted and validated tools need to be created (Goudsmit et al., 2017; Nielsen et al., 2013).
Late diagnosis and lower prescription and intake of medications have been found to be common issues among immigrants affected by dementia living in western countries (Sagbakken & Kumar, 2017). Such problems have been linked with cultural, spiritual, and economic barriers, some of which are unique to or more frequently seen among migrant populations (Canevelli et al., 2018).
Early diagnosis of dementia, before advanced cognitive deterioration has occurred, gives patients the chance to express their personal desires and be directly involved in the planning of a long-term care strategy. At early stages of the condition, family support can be enough to support the needs of the patient, but as the condition progresses, the help of professional caregivers and nursing staff may become necessary, may improve the quality of care, and can prevent burnout of non-professional caregivers (Robinson, Tang, & Taylor, 2015). Family members assisting someone with dementia may feel pressured to provide all the care by themselves, especially in cultural contexts where placing a loved one in a nursing home or other professional care environment is associated with shame. Discussing concerns related to culturally-appropriate care with patients and their families is crucial to build a stronger therapeutic alliance, preventing tension and frustration (Brooke et al., 2018). Likewise, different point of views about end of life care should be considered and discussed among clinicians, patients, and their families (Sagbakken & Kumar, 2017). Lower use of nursing homes is well documented among elderly individuals from ethnic minority and migrant groups, which may not only reflect different perceptions of the appropriateness of such care but may also indicate economic barriers and lack of information (Stevnsborg, Jensen-Dahm, Nielsen, Gasse, & Waldemar, 2016).
Recommendations and conclusion
The challenges described in this article highlight the need to train healthcare workers to recognise the role that culture plays in influencing the individual understanding of dementia; likewise, developing culturally-adapted scales to evaluate cognitive decline is crucial for diagnosis of the condition in people with a non-western ethnic background. At the same time, educational interventions to improve health literacy among ethnic minorities are important to prevent delayed diagnosis and to increase patient compliance.
About the Author
Lorenzo De Min is a research assistant within the Migration group at United Nations University – Maastricht Economic and Social Research Institute on Innovation and Technology (UNU-MERIT). He also collaborates with the local faculty of medicine, where he gives training sessions on “Access to care for migrants and refugees”, “Language barriers in healthcare” and “Patient-doctor communication”. Lorenzo holds an MD from the University of Milan and an MSc in Global Health from Maastricht University. Next to his main job, he contributes to the organisation of the Dutch Global Health Film Festival and collaborates as an editor with the Italian website Saluteglobale.it
Brooke, J., Cronin, C., Stiell, M., & Ojo, O. (2018). The intersection of culture in the provision of dementia care: A systematic review. Journal of Clinical Nursing, 27(17–18), 3241–3253. https://doi.org/10.1111/jocn.13999
Brunnström, H. R., & Englund, E. M. (2009). Cause of death in patients with dementia disorders. European Journal of Neurology, 16(4), 488–492. https://doi.org/10.1111/j.1468-1331.2008.02503.x
Canevelli, M., Lacorte, E., Cova, I., Zaccaria, V., Valletta, M., Agabiti, N., … Vanacore, N. (2018). Estimating dementia cases in the immigrant population living in Italy. Neurological Sciences, 39(10), 1775–1778. https://doi.org/10.1007/s10072-018-3475-2
Dening, T., & Sandilyan, M. B. (2015). Dementia: definitions and types. Nursing Standard, 29(37), 37–42. https://doi.org/10.7748/ns.29.37.37.e9405
Fischer, C., Yeung, E., Hansen, T., Gibbons, S., Fornazzari, L., Ringer, L., & Schweizer, T. A. (2009). Impact of socioeconomic status on the prevalence of dementia in an inner city memory disorders clinic. International Psychogeriatrics, 21(6), 1096–1104. https://doi.org/10.1017/S1041610209990846
Goudsmit, M., Uysal-Bozkir, Ö., Parlevliet, J. L., van Campen, J. P. C. M., de Rooij, S. E., & Schmand, B. (2017). The Cross-Cultural Dementia Screening (CCD): A new neuropsychological screening instrument for dementia in elderly immigrants. Journal of Clinical and Experimental Neuropsychology, 39(2), 163–172. https://doi.org/10.1080/13803395.2016.1209464
Koster, A., Penninx, B. W. J. H., Bosma, H., Kempen, G. I. J. M., Newman, A. B., Rubin, S. M., … Kritchevsky, S. B. (2005). Socioeconomic Differences in Cognitive Decline and the Role of Biomedical Factors. Annals of Epidemiology, 15(8), 564–571. https://doi.org/10.1016/J.ANNEPIDEM.2005.02.008
Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S. G., Huntley, J., Ames, D., … Mukadam, N. (2017). Dementia prevention, intervention, and care. The Lancet, 390(10113), 2673–2734. https://doi.org/10.1016/S0140-6736(17)31363-6
Nakahori, N., Sekine, M., Yamada, M., Tatsuse, T., Kido, H., & Suzuki, M. (2018, April 27). A pathway from low socioeconomic status to dementia in Japan: Results from the Toyama dementia survey. BMC Geriatrics, Vol. 18. https://doi.org/10.1186/s12877-018-0791-6
Nielsen, T. R., Andersen, B. B., Gottrup, H., Lützhøft, J. H., Høgh, P., & Waldemar, G. (2013). Validation of the Rowland Universal Dementia Assessment Scale for Multicultural Screening in Danish Memory Clinics. Dementia and Geriatric Cognitive Disorders, 36(5–6), 354–362. https://doi.org/10.1159/000354375
Robinson, L., Tang, E., & Taylor, J.-P. (2015). Dementia: timely diagnosis and early intervention. BMJ (Clinical Research Ed.), 350, h3029. https://doi.org/10.1136/bmj.h3029
Sagbakken, M., & Kumar, B. (2017). Dementia, Ethnic Minorities and Migrants A Review of the Literature.
Stevnsborg, L., Jensen-Dahm, C., Nielsen, T. R., Gasse, C., & Waldemar, G. (2016). Inequalities in Access to Treatment and Care for Patients with Dementia and Immigrant Background: A Danish Nationwide Study. Journal of Alzheimer’s Disease, 54(2), 505–514. https://doi.org/10.3233/JAD-160124
van Wezel, N., Francke, A. L., Kayan Acun, E., LJM Devillé, W., van Grondelle, N. J., & Blom, M. M. (2018). Explanatory models and openness about dementia in migrant communities: A qualitative study among female family carers. Dementia, 17(7), 840–857. https://doi.org/10.1177/1471301216655236