Hostname: page-component-78c5997874-8bhkd Total loading time: 0 Render date: 2024-11-03T00:16:15.177Z Has data issue: false hasContentIssue false
  • English
  • Français

Attitudes, knowledge and beliefs about dementia: focus group discussions with Pakistani adults in Karachi and Lahore

Published online by Cambridge University Press:  18 July 2019

Nicolas Farina Open the ORCID record for Nicolas Farina [Opens in a new window] ,
Asghar Zaidi ,
Rosalind Willis Open the ORCID record for Rosalind Willis [Opens in a new window]  and
Sara Balouch
Nicolas Farina*
Affiliation:
Centre for Dementia Studies, Brighton and Sussex Medical School, Brighton, UK
Asghar Zaidi
Affiliation:
Centre for Research on Ageing, Social Sciences, University of Southampton, Southampton, UK Department of Social Welfare, Seoul National University, Seoul, Korea
Rosalind Willis
Affiliation:
Centre for Research on Ageing, Social Sciences, University of Southampton, Southampton, UK
Sara Balouch
Affiliation:
Centre for Dementia Studies, Brighton and Sussex Medical School, Brighton, UK School of Health, BPP University, London, UK
*
*Corresponding author. Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Pakistan is a lower middle-income country, which to date has had very little research and policy making to address the challenge of dementia. This study aims to explore the perceptions of dementia in a group of Pakistani adults. A series of focus group discussions were completed during 2017 with men and women in two metropolitan centres in Pakistan (Lahore and Karachi) (N = 40). Two vignettes, depicting someone with mild dementia and someone with severe dementia, were used to facilitate discussions. An induction-led thematic analysis was completed. Five themes were identified, reflecting (a) dementia awareness, (b) responsibility, (c) barriers to health care, (d) identified support needs, and (e) religion. Most participants had little awareness and knowledge about dementia, commonly understood to be a disease of forgetting or just normal ageing. Thus, there is an urgent need of a nation-wide campaign to raise dementia awareness in Pakistan, though this needs to be accompanied by improved, accessible health and social care services.

Keywords

awarenessstigmacognitive impairmentlower-middle incomereligion
Type
Article
Information
Ageing & Society , Volume 40 , Issue 12 , December 2020 , pp. 2558 - 2573
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer's Society (2008) Dementia: Out of the Shadows. London: Alzheimer's Society.Google Scholar
Baasher, TA (2001) Islam and mental health. Eastern Mediterranean Health Journal 7, 372–376.Google ScholarPubMed
Barter, C and Renold, E (1999) The use of vignettes in qualitative research. Social Research Update 25, 1–6.Google Scholar
Bowling, A (2014) Research Methods in Health: Investigating Health and Health Services. Maidenhead, UK: McGraw-Hill Education.Google Scholar
Cohen, L (1995) Toward an anthropology of senility: anger, weakness, and Alzheimer's in Banaras, India. Medical Anthropology Quarterly 9, 314–334.CrossRefGoogle ScholarPubMed
Farina, N, Hughes, LJ, Griffiths, AW and Parveen, S (2019) Adolescents’ experiences and perceptions of dementia. Aging & Mental Health. https://doi.org/10.1080/13607863.2019.1613343.Google ScholarPubMed
Ferri, CP and Jacob, KS (2017) Dementia in low-income and middle-income countries: different realities mandate tailored solutions. PLOS Medicine 14, e1002271.CrossRefGoogle ScholarPubMed
Government of Pakistan (2017) Pakistan Economic Survey 2016–2017. Islamabad: Government of Pakistan.Google Scholar
Hennink, MM (2007) International Focus Group Research: A Handbook for the Health and Social Sciences. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
Hussain, G, Rasul, A, Anwar, H, Sohail, MU, Kamran, SKS, Baig, SM, Shabbir, A and Iqbal, J (2017) Epidemiological data of neurological disorders in Pakistan and neighboring countries: a review. Pakistan Journal of Neurological Sciences 12, 52–70.Google Scholar
Iliffe, S, De Lepeleire, J, Van Hout, H, Kenny, G, Lewis, A, Vernooij-Dassen, M and DIADEM Group (2005) Understanding obstacles to the recognition of and response to dementia in different European countries: a modified focus group approach using multinational, multi-disciplinary expert groups. Aging & Mental Health 9, 1–6.Google ScholarPubMed
Khan, Q (2014) Dementia: challenges of practice in Pakistan. Neurology 83, 2091–2092.CrossRefGoogle ScholarPubMed
Kloppenborg, RP, van den Berg, E, Kappelle, LJ and Biessels, GJ (2008) Diabetes and other vascular risk factors for dementia: which factor matters most? A systematic review. European Journal of Pharmacology 585, 97–108.Google ScholarPubMed
Krueger, RA and Casey, MA (2014) Focus Groups: A Practical Guide for Applied Research. Thousand Oaks, CA: Sage.Google Scholar
La Fontaine, J, Ahuja, J, Bradbury, NM, Phillips, S and Oyebode, JR (2007) Understanding dementia amongst people in minority ethnic and cultural groups. Journal of Advanced Nursing 60, 605–614.CrossRefGoogle ScholarPubMed
Li, X, Fang, W, Su, N, Liu, Y, Xiao, S and Xiao, Z (2011) Survey in Shanghai communities: the public awareness of and attitude towards dementia. Psychogeriatrics: The Official Journal of the Japanese Psychogeriatric Society 11, 83–89.CrossRefGoogle ScholarPubMed
Livingston, G, Sommerlad, A, Orgeta, V, Costafreda, SG, Huntley, J, Ames, D, Ballard, C, Banerjee, S, Burns, A, Cohen-Mansfield, J, Cooper, C, Fox, N, Gitlin, LN, Howard, R, Kales, HC, Larson, EB, Ritchie, K, Rockwood, K, Sampson, EL, Samus, Q, Schneider, LS, Selbæk, G, Teri, L and Mukadam, N (2017) Dementia prevention, intervention, and care. The Lancet 390, 2673–2734.Google ScholarPubMed
Mackenzie, J (2006) Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK. Dementia 5, 233–247.Google Scholar
Maestre, GE (2012) Assessing dementia in resource-poor regions. Current Neurology and Neuroscience Reports 12, 511–519.Google ScholarPubMed
Malik, MA (2015) Universal Health Coverage Assessment Pakistan. Karachi: Global Network for Health Equity.Google Scholar
Milne, A (2010) The ‘D’ word: reflections on the relationship between stigma, discrimination and dementia. Journal of Mental Health 19, 227–233.CrossRefGoogle ScholarPubMed
Misra, A, Tandon, N, Ebrahim, S, Sattar, N, Alam, D, Shrivastava, U, Narayan, KM and Jafar, TH (2017) Diabetes, cardiovascular disease, and chronic kidney disease in South Asia: current status and future directions. BMJ (Clinical Research Edn) 357, j1420.CrossRefGoogle ScholarPubMed
Mukadam, N and Livingston, G (2012) Reducing the stigma associated with dementia: approaches and goals. Aging Health 8, 377–386.CrossRefGoogle Scholar
Mushi, D, Rongai, A, Paddick, S-M, Dotchin, C, Mtuya, C and Walker, R (2014) Social representation and practices related to dementia in Hai District of Tanzania. BMC Public Health 14, 260.CrossRefGoogle ScholarPubMed
National Emergency Operation Centre (2017) National Emergency Action Plan for Polio Eradication. Islamabad: National Emergency Operation Centre.Google Scholar
Nielsen, TR and Waldemar, G (2016) Knowledge and perceptions of dementia and Alzheimer's disease in four ethnic groups in Copenhagen, Denmark. International Journal of Geriatric Psychiatry 31, 222–230.CrossRefGoogle ScholarPubMed
Ott, A, Stolk, RP, Van Harskamp, F, Pols, HAP, Hofman, A and Breteler, MMB (1999) Diabetes mellitus and the risk of dementia: the Rotterdam Study. Neurology 53, 1937–1942.CrossRefGoogle ScholarPubMed
Pakistan Bureau of Statistics (2019) Population by Religion. Available at http://www.pbs.gov.pk/content/population-religion.Google Scholar
Patel, V and Prince, M (2001) Ageing and mental health in a developing country: who cares? Qualitative studies from Goa, India. Psychological Medicine 31, 29–38.CrossRefGoogle Scholar
Prince, M, Wimo, A, Guerchet, M, Ali, G-C, Wu, Y-T and Prina, M (2015) World Alzheimer Report 2015: The Global Impact of Dementia. London: Alzheimer's Disease International.Google Scholar
Qadir, F, Gulzar, W, Haqqani, S and Khalid, A (2013) A pilot study examining the awareness, attitude, and burden of informal caregivers of patients with dementia. Care Management Journals 14, 230–240.CrossRefGoogle ScholarPubMed
Randhawa, H, Jiwa, A and Oremus, M (2015) Identifying the components of clinical vignettes describing Alzheimer's disease or other dementias: a scoping review. BMC Medical Informatics and Decision Making 15, 54.CrossRefGoogle ScholarPubMed
Schoenberg, NE and Ravdal, H (2000) Using vignettes in awareness and attitudinal research. International Journal of Social Research Methodology 3, 63–74.CrossRefGoogle Scholar
Smithson, J (2008) Focus groups. In Alasuutari, P, Bickman, L and Brannen, J (eds),The Sage Handbook of Social Research Methods. Thousand Oaks, CA: Sage, pp. 357–369.CrossRefGoogle Scholar
Stewart, DW and Shamdasani, PN (2014) Focus Groups: Theory and Practice. Thousand Oaks, CA: Sage.Google Scholar
Werner, P (2003) Knowledge about symptoms of Alzheimer's disease: correlates and relationship to help-seeking behavior. International Journal of Geriatric Psychiatry 18, 1029–1036.CrossRefGoogle ScholarPubMed
Whitmer, RA, Sidney, S, Selby, J, Johnston, SC and Yaffe, K (2005) Midlife cardiovascular risk factors and risk of dementia in late life. Neurology 64, 277–281.Google ScholarPubMed
Willis, R, Zaidi, A, Balouch, S and Farina, N (2018) Experiences of people with dementia in Pakistan: help-seeking, understanding, stigma, and religion. The Gerontologist. https://doi.org/10.1093/geront/gny143.Google Scholar
World Health Organization (2014) Leading International Islamic Scholars Unite to Protect Children from Polio Paralysis. Available at http://www.emro.who.int/polio/polio-news/leading-international-islamic-scholars-unite-to-protect-children-from-polio-paralysis.html.Google Scholar
World Health Organization (2017 a) Country Cooperation Strategy at a Glance: Pakistan. Geneva: World Health Organization.Google Scholar
World Health Organization (2017 b) Dementia: A Public Health Priority. Geneva: World Health Organization.Google Scholar
Zaidi, A (2013) Global AgeWatch Index 2013: Purpose, Methodology and Results. Southampton, UK: University of Southampton.Google Scholar
Zaidi, A, Stefanoni, S and Khalil, H (2018) Moving from the Margins: Promoting the Rights of Older Persons in Pakistan (Policy brief). Southampton, UK: University of Southampton.Google Scholar
Zaidi, A, Willis, R, Farina, N, Balouch, S, Jafri, H, Ahmed, I, Khan, Q and Jaffri, R (2019) Understanding, Beliefs and Treatment of Dementia in Pakistan: Final Report. Southampton: University of Southampton.Google Scholar