“We Are Doing These Things So That People Will Not Laugh at Us”: Caregivers’ Attitudes About Dementia and Caregiving in Nigeria

Abstract

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.

Keywords

mental health and illness youth,young adults,older people aging,home care caregivers,caretaking,religion,spirituality culture,cultural competence,dementia,health seeking health,access to health care,immigrants,migrants qualitative descriptive research Nigeria

Get full access to this article

View all access options for this article.

References

Abdulmalik

Olayiwola

Docrat

Lund

Chisholm

Gureje

(2019). Sustainable financing mechanisms for strengthening mental health systems in Nigeria. International Journal of Mental Health Systems, 13, Article 38. https://doi.org/10.1186/s13033-019-0293-8

Adebiyi

A. O.

Fagbola

M. A.

Olakehinde

Ogunniyi

(2016). Enacted and implied stigma for dementia in a community in south-west Nigeria. Psychogeriatrics, 16(4), 268–273. https://doi.org/10.1111/psyg.12156

Adeloye

Auta

Ezejimofor

Oyedokun

Harhay

M. O.

Rudan

Chan

K. Y.

(2019). Prevalence of dementia in Nigeria: A systematic review of the evidence. Journal of Global Health Reports, 3, Article e2019014. https://doi/10.29392/joghr.3.e2019014

Ae-Ngibise

K. A.

Doku

V. C. K.

Asante

K. P.

Owusu-Agyei

(2015). The experience of caregivers of people living with serious mental disorders: A study from rural Ghana. Global Health Action, 8(1), Article 26957. https://doi.org/10.3402/gha.v8.26957

Akinyemi

(2014). Ageing and national development in Nigeria: Costly assumptions and challenges for the future. https://www.researchgate.net/publication/289428065_Ageing_and_national_development_in_Nigeria_Costly_assumptions_and_challenges_for_the_future

Armiyau

A. Y.

(2015). A review of stigma and mental illness in Nigeria. https://www.researchgate.net/profile/Aishatu_Armiyau2/publication/277934187_A_Review_of_Stigma_and_Mental_Illness_in_Nigeria/links/57c8429f08aefc4af34ebe6c.pdf

Atkinson

Bray

(2013). Dementia awareness & intergenerational exchange in schools: A pioneer project supporting dementia friendly communities. https://www2.worcester.ac.uk/documents/Schools_Evaluation_Final_Report.pdf

Ballard

Gauthier

Corbett

Brayne

Aarsland

Jones

(2011). Alzheimer’s disease. The Lancet, 377(9770), 1019–1031. https://doi.org/10.1016/S0140-6736(10)61349-9

Benbow

S. M.

Jolley

(2012). Dementia: Stigma and its effects. Neurodegenerative Disease Management, 2(2), 165–172. https://doi.org/10.2217/nmt.12.7

10.

Berwald

Roche

Adelman

Mukadam

Livingston

(2016). Black African and Caribbean British communities’ perceptions of memory problems: “We don’t do dementia.” PLOS ONE, 11(4), Article e0151878. https://doi.org/10.1371/journal.pone.0151878

11.

Birks

Chapman

Francis

(2008). Memoing in qualitative research: Proving data and processes. Journal of Research in Nursing, 13(1), 68–75. https://doi.org/10.1177/1744987107091254

12.

Birt

Scott

Cavers

Campbell

Walter

(2016). Member checking: A tool to enhance trustworthiness or merely a nod to validation? Qualitative Health Research, 26(13), 1802–1811. https://doi.org/10.1177/1049732316654870

13.

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. https://doi.org/10.1191/1478088706qp063oa

14.

Brinkhoff

(2017). Anambra: State in Nigeria. https://www.citypopulation.de/php/nigeria-admin.php?adm1id=NGA004

15.

Brooke

Ojo

(2019). Contemporary views on dementia as witchcraft in sub-Saharan Africa: A systematic review. Journal of Clinical Nursing, 29, 20–30. https://doi.org/10.1111/jocn.15066

16.

Bryman

(2012). Social research methods (4th ed.). Oxford University Press.

17.

Burns

J. K.

Tomita

(2015). Traditional and religious healers in the pathway to care for people with mental disorders in Africa: A systematic review and meta-analysis. Social Psychiatry and Psychiatric Epidemiology, 50(6), 867–877. https://doi.org/10.1007/s00127-014-0989-7

18.

Chow

J. C. C.

Auh

E. Y.

Scharlach

A. E.

Lehning

A. J.

Goldstein

(2010). Types and sources of support received by family caregivers of older adults from diverse racial and ethnic groups. Journal of Ethnic & Cultural Diversity in Social Work, 19(3), 175–194. https://doi.org/10.1080/15313204.2010.499318

19.

Dilworth-Anderson

Gibson

B. E.

(2002). The cultural influence of values, norms, meanings, and perceptions in understanding dementia in ethnic minorities. Alzheimer Disease & Associated Disorders, 16, S56–S63. https://doi.org/10.1097/00002093-200200002-00005

20.

Faleye

O. A.

(2017). Housing “lunatics” in Nigeria: A study in the history of eco-psychiatry and psychiatric epidemiology. https://pdfs.semanticscholar.org/1bc6/acad09eb46004c4f4578900a8b78ff567610.pdf?_ga=2.5922099.1297575420.1572128597-1052156134.1570034953

21.

Fereday

Muir-Cochrane

(2006). Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5(1), 80–92. https://doi.org/10.1177/160940690600500107

22.

Fusch

P. I.

Ness

L. R.

(2015). Are we there yet? Data saturation in qualitative research. The Qualitative Report, 20(9), 1408–1416. http://nsuworks.nova.edu/tqr/vol20/iss9/3

23.

George-Carey

Adeloye

Chan

K. Y.

Paul

Kolčić

Campbell

Rudan

(2012). An estimate of the prevalence of dementia in Africa: A systematic analysis. Journal of Global Health, 2(2), Article 020401. https://doi.org/10.7189/jogh.02.020401

24.

Goffman

(1963). Stigma: Notes on the management of spoiled identity. Prentice-Hall.

25.

Goffman

(2006). Selections from stigma. In Davis

L. E.

(Ed.), The disability studies reader (2nd ed., pp. 131–140). Routledge.

26.

Gurayah

(2015). Caregiving for people with dementia in a rural context in South Africa. South African Family Practice, 57(3), 194–197. https://doi.org/10.1080/20786190.2014.976946

27.

Hadi

M., A.

Closs

S., J.

(2015). Ensuring rigour and trustworthiness of qualitative research in clinical pharmacy. International Journal of Clinical Pharmacy, 38, 641–646.

28.

Hall

Sikes

(2017). “It would be easier if she’d died”: Young people with parents with dementia articulating inadmissible stories. Qualitative Health Research, 27(8), 1203–1214. https://doi.org/10.1177/1049732317697079

29.

Hamilton

J. B.

(2020). Rigor in qualitative methods: An evaluation of strategies among underrepresented rural communities. Qualitative Health Research, 30(2), 196–204. https://doi.org/10.1177/1049732319860267

30.

Harris

G. M.

Allen

R. S.

Dunn

Parmelee

(2013). “Trouble won’t last always”: Religious coping and meaning in the stress process. Qualitative Health Research, 23(6), 773–781. https://doi.org/10.1177/1049732313482590

31.

Goodkind

Kowal

(2016). An aging world: 2015. https://www.census.gov/content/dam/Census/library/publications/2016/demo/p95-16-1.pdf

32.

Kakuma

Kleintjes

Lund

Drew

Green

Flisher

A. J.

& MHAPP Research Programme Consortium. (2010). Mental health stigma: What is being done to raise awareness and reduce stigma in South Africa? African Journal of Psychiatry, 13(2), 116–124. https://doi.org/10.4314/ajpsy.v13i2.54357

33.

Kalaria

R. N.

Maestre

G. E.

Arizaga

Friedland

R. P.

Galasko

Hall

. . . Antuono

(2008). Alzheimer’s disease and vascular dementia in developing countries: Prevalence, management, and risk factors. The Lancet Neurology, 7(9), 812–826. https://doi.org/10.1016/S1474-4422(08)70169-8

34.

Kehoua

Dubreuil

C. M.

Ndamba-Bandzouzi

Guerchet

Mbelesso

Dartigues

J. F.

Preux

P. M.

(2019). People with dementia in Sub-Saharan Africa: From support to abuse by caregivers: Results of EPIDEMCA-FU program in Congo. Dementia and Geriatric Cognitive Disorders Extra, 9(1), 163–175. https://doi/10.1159/000489846

35.

Khonje

Milligan

Yako

Mabelane

Borochowitz

K. E.

de Jager

C. A.

(2015). Knowledge, attitudes and beliefs about dementia in an urban Xhosa-speaking community in South Africa. Advances in Alzheimer’s Disease, 4, 21–36. https://doi.org/10.4236/aad.2015.42004

36.

Kim

Sefcik

J. S.

Bradway

(2017). Characteristics of qualitative descriptive studies: A systematic review. Research in Nursing & Health, 40(1), 23–42. https://doi.org/10.1002/nur.21768

37.

Kleinman

(1978). Concepts and a model for the comparison of medical systems as cultural systems. Social Science and Medicine. Part B: Medical Anthropology, 12, 85–93. https://doi.org/10.4324/9781003136378-3

38.

Kleinman

Good

(Eds.). (1985). Culture and depression: Studies in anthropology and cross-cultural psychiatry of affect and disorder. University of California Press.

39.

Labinjo

Serrant

Ashmore

Turner

(2020). Perceptions, attitudes and cultural understandings of mental health in Nigeria: A scoping review of published literature. Mental Health, Religion & Culture, 23(7), 606–624. https://doi.org/10.1080/13674676.2020.1726883

40.

Lambert

S. D.

Loiselle

C. G.

(2008). Combining individual interviews and focus groups to enhance data richness. Journal of Advanced Nursing, 62(2), 228–237. https://doi.org/10.1111/j.1365-2648.2007.04559.x

41.

Lambert

V. A.

Lambert

C. E.

(2012). Qualitative descriptive research: An acceptable design. Pacific Rim International Journal of Nursing Research, 16(4), 255–256. https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/5805

42.

Lietz

C. A.

Langer

C. L.

Furman

(2006). Establishing trustworthiness in qualitative research in social work. Qualitative Social Work, 5(4), 441–458. https://doi.org/10/1177/1473325006070288

43.

Liu

Hinton

Tran

Hinton

Barker

J. C.

(2008). Reexamining the relationships among dementia, stigma, and aging in immigrant Chinese and Vietnamese family caregivers. Journal of Cross-Cultural Gerontology, 23(3), 283–299. https://doi.org/10.1007/s10823-008-9075-5

44.

Nwakasi

C. C.

(2019). Exploring the experiences of Nigerian female dementia caregivers [Electronic thesis or dissertation]. https://etd.ohiolink.edu/apexprod/rws_olink/r/1501/10?p10_etd_subid=183263&clear=10

45.

Nwakasi

C. C.

Hayes

Fulton

Roberts

A. R.

(2019). A pilot qualitative study of dementia perceptions of Nigerian migrant caregivers. International. Journal of Africa Nursing Sciences, 10, 167–174. https://doi.org/10.1016/j.ijans.2019.03.003

46.

Ogunniyi

(2018). Challenges faced by Nigerian families dealing with dementia: What can be done? http://gabiwilliamsalzheimersfoundation.org/assets/img/demo/GWAF%20lecture_2018.pdf

47.

Ogunniyi

Hall

K. S.

Baiyewu

Gureje

Unverzagt

Gao

Hendrie

H. C.

(2005). Caring for individuals with dementia: The Nigerian experience. West African Journal of Medicine, 24(3), 259–262. https://doi.org/10.4314/wajm.v24i3.28211

48.

Okoye

(2012). Family care-giving for ageing parents in Nigeria: Gender differences, cultural imperatives and the role of education. https://www.researchgate.net/publication/233762967_Family_care-giving_for_ageing_parents_in_Nigeria_gender_differences_cultural_imperatives_and_the_role_of_education

49.

Okoye

(2014). Financial incentives to support family caregivers of older adults in Nigeria: A policy consideration. https://www.researchgate.net/publication/267868227_Financial_Incentives_to_Support_Family_Care-Givers_of_Older_Adults_in_Nigeria_a_Policy_Consideration

50.

Pescosolido

Martin

J. K.

(2015). The stigma complex. Annual Review of Sociology, 41, 87–116. https://doi.org/10.1146/annurev-soc-071312-145702

51.

Sandelowski

(2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340. https://doi.org/10.1002/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g

52.

Schatz

Seeley

(2015). Gender, ageing and carework in East and Southern Africa: A review. Global Public Health, 10(10), 1185–1200. https://doi.org/10.1080/17441692.2015.1035664

53.

Shamsaei

Kermanshahi

S. M. K.

Vanaki

Holtforth

M. G.

(2013). Family care giving in bipolar disorder: Experiences of stigma. Iranian Journal of Psychiatry, 8(4), 188–194. https://pubmed.ncbi.nlm.nih.gov/25628713/

54.

Sosa-Ortiz

A. L.

Acosta-Castillo

Prince

M. J.

(2012). Epidemiology of dementias and Alzheimer’s disease. Archives of Medical Research, 43(8), 600–608. https://doi.org/10.1016/j.arcmed.2012.11.003

55.

Spittel

Maier

Kraus

(2019). Awareness challenges of mental health disorder and dementia facing stigmatisation and discrimination: A systematic literature review from Sub-Sahara Africa. Journal of Global Health, 9(2), 1–11. https://doi/10.7189/jogh.09.020419

56.

Togonu-Bickersteth

Akinyemi

A. I.

(2014). Ageing and national development in Nigeria: Costly assumptions and challenges for the future. African Population Studies, 27(2), 361–371. https://doi.org/10.11564/27-2-481

57.

Ugochukwu

Mbaezue

Lawal

S. A.

Azubogu

Sheikh

T. L.

Vallières

(2020). The time is now: Reforming Nigeria’s outdated mental health laws. The Lancet. Global Health, 8(8), e989–e990. https://doi.org/10.1016/S2214-109X(20)30302-8

58.

Urbańska

Szcześniak

Rymaszewska

(2015). The stigma of dementia. Postępy Psychiatrii i Neurologii, 24(4), 225–230. https://doi.org/10.1016/j.pin.2015.10.001

59.

Uwakwe

(2000). Knowledge of religious organizations about dementia and their role in care. International Journal of Psychiatry, 15, 1152–1157. https://doi.org/10.1002/1099-1166(200012)15:12<1152::aid-gps247>3.0.co;2-m

60.

Uwakwe

(2006). Satisfaction with dementia care-giving in Nigeria—A pilot investigation. International Journal of Geriatric Psychiatry, 21(3), 296–297. https://doi.org/10.1002/gps.1500

61.

Velkoff

V. A.

Kowal

P. R.

(2006). Aging in sub-Saharan Africa: The changing demography of the region. http://www.nap.edu/read/11708/chapter/5#55

62.

Wahab

E. O.

Ikebudu

C. J.

(2014). Quality of life of patients with early onset dementia in Nigeria. International Letters of Social and Humanistic Sciences, 12, 28–42. https://doi.org/10.18052/www.scipress.com/ILSHS.12.28

63.

Welcome

M. O.

(2011). The Nigerian health care system: Need for integrating adequate medical intelligence and surveillance systems. Journal of Pharmacy & Bioallied Sciences, 3(4), 470–478. https://doi.org/10.4103/0975-7406.90100

64.

Werner

Goldstein

Buchbinder

(2010). Subjective experience of family stigma as reported by children of Alzheimer’s disease patients. Qualitative Health Research, 20(2), 159–169. https://doi.org/10.1177/1049732309358330

65.

Williams

Gorman

Hankerson

(2014). Implementing a mental health ministry committee in faith-based organizations: The promoting emotional wellness and spirituality program. Social Work in Health Care, 53(4), 414–434. https://doi.org/10.1080/00981389.2014.880391

66.

World Health Organization. (2014). Mental health atlas country profile 2014: Nigeria. https://www.who.int/mental_health/evidence/atlas/profiles-2014/nga.pdf?ua=1

67.

Yusuf

A. J.

Baiyewu

(2012). Beliefs and attitudes towards dementia among community leaders in northern Nigeria. West African Journal of Medicine, 31(1), 3–7. https://www.researchgate.net/publication/232745751_Beliefs_and_Attitudes_Towards_Dementia_among_Community_Leaders_in_Northern_Nigeria

68.

Zaney

G. D.

(2018). Promoting a healthier, secure aging. http://www.ghana.gov.gh/index.php/media-center/features/1966-promoting-a-healthier-secure-ageing

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.13 MB