The Alzheimer’s Dementia Patients’ Observed Illness Course and Experience in Ghana and Care Lessons to Be Learnt: A Mental Health Professional’s Perspective
Alzheimer’s disease (AD) and associated dementia patient numbers continue
to increase globally with associated economic
costs to healthcare systems. Of note
is the increase in numbers in lower and middle-income countries (LMICs) including Sub-Saharan African (SSA) countries, which already face
challenges with their health budgets from communicable and non-communicable diseases. Ghana, an SSA country, faces the problem of healthcare budgetary difficulties and the
additional impact of AD as a consequence of increasing population strata of old aged persons (OAPs) due to the
demographic transitioneffect.This article uses examples of known patients’ illness courses to give aperspective on the lived experience
of patients with dementia (PWD) in Ghana, living amongst a populace with
a culture of stigmatization of PWD, and a relatively fragile public mental
health system (PMHS) for those with mental illness,
including AD. The lived experience of AD patients is characterised bystigmatisation, discrimination, non-inclusiveness,
diminished dignity and human rights abuses in the face of their mental
disability, and eventually death. This article is an advocacy article giving
voice to the voiceless and all persons suffering from AD and other dementias in
Ghana, whilst pleading for a call to action from healthcare professionals and
responsible state agencies.
References
[1]
GBD 2019 Dementia Forecasting Collaborators (2022) Estimation of the Global Prevalence of Dementia in 2019 and Forecasted Prevalence in 2050: An Analysis for the Global Burden of Disease Study 2019. The Lancet Public Health, 7, e105-e125. http://www.thelancet.com/public-health
[2]
Kalaria, R.N., Maestre, G.E., Arizaga, R., Friedland, R., et al. (2008) Alzheimer’s Disease and Vascular Dementia in Developing Countries: Prevalence, Management and Risk Factors. The Lancet Neurology, 7, 818-826. http://www.thelancet.com/neurology https://doi.org/10.1016/S1474-4422(08)70169-8
[3]
Guerchet, M.M., Mayston, R., Lloyd-Sherlock, P., Prince, M.J., Aboderin, I., Akinyemi, R., et al. (2017) Dementia in Sub-Saharan Africa: Challenges and Opportunities. Alzheimer’s Disease International. https://unilim.hal.science/hal-03495416
[4]
Akinyemi, R.O., Yaria, J., Ojagbemi, A., Guerchet, M., et al. (2022) Dementia in Africa: Current Evidence, Knowledge Gaps, and Future Directions. Alzheimer’s & Dementia, 18, 790-809.
[5]
Mba, C.J. (2010) Population Ageing in Ghana: Research Gaps and the Way Forward. Journal of Ageing Research, 2010, Article ID: 672157. https://doi.org/10.4061/2010/672157
[6]
Wimo, A., Seeher, K., Cataldi, R., Cyhlarova, E., Dielemann, J.L., Frisell, O., et al. (2023) The Worldwide Costs of Dementia in 2019. Alzheimer’s and Dementia, 19, 2865-2873. https://doi.org/10.1002/alz.12901
[7]
Nandi, A., Counts, N., Chen, S., Seligman, B., Tortorice, D., et al. (2022) Global and Regional Projections of the Economic Burden of Alzheimer’s Dementia and Related Dementias from 2019 to 2050: A Value of Statistical Life Approach. eClinicalMedicine, 51, Article 101580. https://doi.org/10.1016/j.eclinm.2022.101580
[8]
Belloy, M.E., Napolioni, V. and Greicius, M.D. (2019) A Quarter Century of APOE and Alzheimer’s Disease: Progress to Date and the Path Forward. Neuron, 101, 820-838. https://doi.org/10.1016/j.eclinm.2022.101580
[9]
Schlesinger, D., Grinberg, L., Alba, J., et al. (2013) African Ancestry Protects against Alzheimer’s Disease-Related Neuropathology. Molecular Psychiatry, 18, 79-85. https://doi.org/10.1038/mp.2011.136
[10]
Sirugo, G., Williams, S.M. and Tishkoff, S.A. (2019) The Missing Diversity in Human Genetic Studies. Cell, 177, 1080. https://doi.org/10.1016/j.cell.2019.04.032
[11]
Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballad, C., Banerjee, S., et al. (2020) Dementia Prevention, Intervention and Care: 2020 Report of the Lancet Commission. The Lancet, 396, 413-446. https://doi.org/10.1016/S0140-6736(20)30367-6
[12]
Fingers Brain Health Institute (2023) Dementia Prevention, Research and Implementation. https://fbhi.se/
[13]
Ju, Y. and Tam, K.Y. (2021) Pathological Mechanisms and Therapeutic Strategies for Alzheimer’s Disease. Neural Regeneration Research, 17, 543-549. https://doi.org/10.4103/1673-5374.320970
[14]
Sturchio, A., Dwidevi, A.K., Malm, T., Wood, M.J.A., Cilia, R., et al. (2022) High Soluble Amyloid-β42 Predicts Normal Cognition in Amyloid-Positive Individuals with Alzheimer’s Disease-Causing Mutations. Journal of Alzheimer’s Disease, 90, 333-348. https://doi.org/10.3233/JAD-220808
[15]
Swerdlow, R.H. (2023) The Alzheimer’s Disease Mitochondrial Cascade Hypothesis: A Current Overview. Journal of Alzheimer’s Disease, 92, 751-768. https://doi.org/10.3233/JAD-221286
[16]
Atri, A. (2019) The Alzheimer’s Disease Clinical Spectrum: Diagnosis and Management. Medical Clinics of North America, 103, 263-293. https://doi.org/10.1016/j.mcna.2018.10.009
[17]
Pedroro-Prieto, C.M., Garcia-Carpintero, S., Frontinan-Rubio, J., Llanos-Gonzalez, E., Garcia, C.A., et al. (2020) A Comprehensive Systematic Review of CSF Proteins and Peptides that Define Alzheimer’s Disease. Clinical Proteomics, 17, Article No. 21. https://doi.org/10.1186/s12014-020-09276-9
[18]
Gonzalez-Ortiz, F., Turton, M., Przemyslaw, R.K., et al. (2023) Brain-Derived Tau: A Novel Blood-Based Biomarker for Alzheimer’s Disease-Type Neurodegeneration. Brain, 146, 1152-1165. https://doi.org/10.1093/brain/awac407
[19]
Ashton, N.J., Brum, W.S., Di Molfetta, G., Benedet, A.L., Arslan, B., et al. (2024) Diagnostic Accuracy of a Plasma Phosphorylated Tau 217 Immunoassay for Alzheimer Disease Pathology. JAMA Neurology, E1-E10. https://doi.org/10.1001/jamaneurol.2023.5319
[20]
Ju, C., Wong, I.C., Mann, K.K., Braur, R., Ma, T.T., et al. (2021) Global Trends in Symptomatic Medication against Dementia in 66 Countries/Regions from 2008 to 2016. European Journal of Neurology, 28, 3979-3989. https://doi.org/10.1111/ene.15053
[21]
Alexander, G.C., Knopman, D.S., Emerson, S.S., Ovbiagele, B., Kryscio, R.J., et al. (2021) Revisiting FDA Approval of Aducanumab. The New England Journal of Medicine, 385, 769-771. https://doi.org/10.1056/NEJMp2110468
[22]
Mahase, E. (2023) Alzheimer’s Disease: FDA Approves Lecanemab Amid Cost and Safety Concerns. The BMJ, 380, 73. https://doi.org/10.1136/bmj.p73
[23]
Ramanan, V.K., Armstrong, M.J., Choudhury, P., Coever, K., Hamilton, R.H., et al. (2023) Antiamyloid Monoclonal Antibody Therapy for Alzheimer’s Disease: Emerging Issues in Neurology. Neurology, 101, 842-852. https://doi.org/10.1212/WNL.0000000000207757
[24]
Raikes, A.C., Hernandez, G.D., Mathews, D.C., Lukic, A.S., Law, M., et al. (2022) Exploratory Imaging Outcome of a Phase 1b/2a Clinical Trial Allopregnanolone as a Regenerative Therapeutic for Alzheimer’s Disease: Structural Effects and Functional Connectivity Outcomes. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 8, e12258. https://doi.org/10.1002/trc2.12258
[25]
Zucchella, C., Sinforiani, E., Tamburin, S., Federico, A., Mantovani, E., et al. (2018) The Multidisciplinary Approach to Alzheimer’s Disease and Dementia. A Narrative Review of Non-Pharmacological Treatment. Frontiers in Neurology, 9, Article 1058. https://doi.org/10.3389/fneur.2018.01058
[26]
Tijms, B.M., Vromen, E.M., Mjaavatten, O., Holstege, H., Reus, L.M., et al. (2024) Cerebrospinal Fluid Proteomics in Patients with Alzheimer’s Disease Reveals Five Molecular Subtypes with Distinct Genetic Risk Profiles. Nature Aging, 4, 33-47. https://doi.org/10.1038/s43587-023-00550-7
[27]
Nyarko, C.A. (2022) Mental Healthcare in Ghana: A Time Bomb. GNA. https://gna.org.gh/2022/08/mental-healthcare-in-ghana-a-time-bomb/
[28]
Osei, A. (2018) The Mental Health Act 846, Six Years on. Graphic Online. https://www.graphic.com.gh/news/health/the-mental-health-act-846-six-years-on.html
[29]
Andoh, D. (2022) 10 Years after Passage of Law: Mental Health Care Still Unsatisfactory-Dr. Akwasi Osei Laments. Graphic Online. https://www.adomonline.com/10-years-after-passage-of-law-mental-health-care-still-unsatisfactory/
[30]
Opare-Henaku, A. and Utsey, S.O. (2017) Culturally Prescribed Beliefs about Mental Illness among the Akan of Ghana. Transcultural Psychiatry, 54, 502-522. https://doi.org/10.1177/1363461517708120
[31]
Quin, N. (2007) Beliefs and Community Responses to Mental Health in Ghana: The Experiences of Family Carers. International Journal of Social Psychiatry, 53, 175-188. https://doi.org/10.1177/0020764006074527
[32]
Ae-Ngibise, K., Cooper, S., Adiibokah, E., Akpalu, B., Lund, C., Mhapp Research Programme Consortium., et al. (2010) “Whether You Like It or Not People with Mental Problems Are Going to Go to Them”: A Qualitative Exploration into the Widespread Use of Traditional and Faith Healers in the Provision of Mental Health Care in Ghana. International Review of Psychiatry, 22, 558-567. https://doi.org/10.3109/09540261.2010.536149
[33]
Read, U.M., Adiibokah, E. and Nyame, S. (2009) Local Suffering and the Global Discourse of Mental Health and Human Rights: An Ethnographic Study of Response to Mental Illness in Rural Ghana. Globalization and Health, 5, Article No. 13. https://doi.org/10.1186/1744-8603-5-13
[34]
Human Rights Watch (2017) #BreakTheChains: End Shackling in Ghana. https://www.hrw.org/video-photos/video/2017/10/07/breakthechains-end-shackling-Ghana
[35]
Sarfo, F.S., Kyem, G., Asibey, S.O., Tagge, R. and Ovbiagele, B. (2021) Contemporary Trends in HIV-Associated Neurocognitive Disorders in Ghana. Clinical Neurology and Neurosurgery, 210, Article id: 107003. https://doi.org/10.1016/j.clineuro.2021.107003
[36]
Sarfo, F.S., Akassi, J., Adamu, S., Obese, V. and Ovbiagele, B. (2017) Burden and Predictors of Post-Stroke Cognitive Impairment in a Sample of Ghanaian Stroke Survivors. The Journal of Stroke & Cerebrovascular Diseases, 26, 2553-2562. https://doi.org/10.1016/j.jstrokecerebrovasdis.2017.05.041
[37]
Ofori-Atta, A., Attafuah, J., Jack, H., Baning, F., Rosenheck, R. and the Joining Forces Research Consortium (2018) Joining Psychiatric Care and Faith Healing in a Prayer Camp in Ghana: Randomised Trial. The British Journal of Psychiatry, 212, 34-41. https://doi.org/10.1192/bjp.2017.12
[38]
Mfoafo-M’Carthy, M. and Grishow, J. (2022) Social Exclusion and Marginalization of Mental Illness in Ghana. In: Liamputtong, P., Ed., Handbook of Social Inclusion, Springer, Cham, 953-967. https://doi.org/10.1007/978-3-030-89594-5_53
[39]
15th Pre-Sessional Working Group (2022) Ghana: Submission to the UN Committee on the Rights of Persons with Disabilities. Human Rights Watch (HRW). https://www.hrw.org/news/2022/03/02/ghana-submission-un-committee-rights-persons-disabilities
[40]
Spittel, S. and Wolf-Ostermann, K. (2013) P2-350: Challenges in Health Care for People with Dementia in Ghana. Alzheimer’s & Dementia, 9, 488. https://doi.org/10.1016/j.jalz.2013.05.998
[41]
Yirabo, E., Lulin, Z., Antwi, H.A., Marfo, E.O., Amoako, K.O. and Offin, D.K. (2014) A Qualitative Review of Ghana’s Elderly Care Policy: A Grounded Theory Approach Using EU’s “Carmen” Model. International Journal of Academic Research in Public Policy and Governance, 1, 91-116.
[42]
Kwankye, S.O. (2013) Growing Old in Ghana: Health and Economic Implications. Postgraduate Medical Journal of Ghana, 2, 88-89. https://doi.org/10.60014/pmjg.v2i2.42
[43]
Kpessa-White, M. (2018) Aging and Demographic Transition in Ghana: State of the Elderly and Emerging Issues. The Gerontologist, 58, 403-408. https://doi.org/10.1093/geront/gnx205
[44]
Karikari, G., Lohrmann, D.K., Huber, L., Adamek, M. and Omodior, O. (2022) Attitudes of Graduating Health Practitioners toward Older Persons in Ghana. Indigenous Health Faculty Publications. https://commons.und.edu/ih-fac/1
[45]
Atakro, C.A. (2022) Gerontological Nursing in Ghana: Preferences and Perceptions of Nursing Students. Gerontology & Geriatrics Education, 43, 482-498. https://doi.org/10.1080/02701960.2022.2060419
[46]
Gyesi, K.Z. (2022) First Ghana Trained Geriatrician Demands Better Care for the Elderly. Graphic Online. https://www.graphic.com.gh/news/general-news/ghana-s-first-locally-trained-geriatrician-graduates-demands-better-care-for-the-elderly.html
[47]
Ayisi-Boateng, N.K., Opoku, D.A., Tawiah, P., Owusu-Antwi, R., Kunadu, E., et al. (2022) Carers’ Needs Assessment for Patients with Dementia in Ghana. African Journal of Primary Health Care & Family Medicine, 14, a3595. https://doi.org/10.4102/phcfm.v14i1.3595
[48]
Dovie, D.A. (2019) The Status of Older Adult Care in Contemporary Ghana: A Profile of Some Emerging Issues. Frontiers in Sociology, 4, Article 25. https://doi.org/10.3389/fsoc.2019.00025
[49]
Atakro, C.A., Atakro, A., Aboagye, J.S., Blay, A.A., Addo, S.B., Agyare, D.F., et al. (2021) Older People’s Challenges and Expectation of Healthcare in Ghana: A Qualitative Study. PLOS ONE, 16, e0245451. https://doi.org/10.1371/journal.pone.0245451
[50]
Van der Geest, S. (2016) Will Families in Ghana Continue to Care for Older People? In: Hoffman, J. and Pype, K., Eds., Ageing in Sub-Saharan Africa: Spaces and Practices of Care, Policy Press, Bristol, 21-41. https://doi.org/10.56687/9781447325277-006
[51]
Essuman, A. and Mate-Kole, C.C. (2021) Ageing in Ghana. In: Selin, H., Ed., Aging across Cultures, Vol. 10, Springer, Cham, 1-11. https://doi.org/10.1007/978-3-030-76501-9_1
[52]
Sossou, M.A. and Yogtiba, J.A. (2015) Abuse, Neglect, and Violence against Elderly Women in Ghana: Implications for Social Justice and Human Rights. Journal of Elder Abuse & Neglect, 27, 422-427. https://doi.org/10.1080/08946566.2015.1091423
[53]
United Nations (2006) Convention of the Rights of Persons with Disabilities and Optional Protocol. https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf
[54]
Gong, J., Harris, K., Lipnicki, D.M., et al. (2023) Sex Differences in Dementia Risk and Risk Factors: Individual-Participant Data Analysis Using 21 Cohorts across Six Continents from the COSMIC Consortium. Alzheimer’s & Dementia, 19, 3365-3378. https://doi.org/10.1002/alz.12962
[55]
Ashirifi, G.D., Karikari, G. and Adamek M.E. (2022) Prioritizing the National Aging Policy in Ghana: Critical Next Steps. Journal of Aging & Social Policy, 34, 127-144. https://doi.org/10.1080/08959420.2021.1927621
[56]
Kpessa-Whyte, M. and Tsekpo, K. (2020) Lived Experience of the Elderly in Ghana: Analysis of Ageing Policies and Options for Reform. Journal of Cross-Cultural Gerontology, 35, 341-352. https://doi.org/10.1007/s10823-020-09401-z
[57]
Aboderin, I. (2009) Ageing in West Africa. In: Uhlenberg, P., Ed., International Handbook of Population Ageing, Springer, Dordrecht, 253-276. https://doi.org/10.1007/978-1-4020-8356-3_12
[58]
Ayisi-Boateng, N.K., Sarfo, F.S., Opoku, D.A., et al. (2022) Educational Intervention to Enhance the Knowledge of Ghanaian Health Workers on Alzheimer’s Disease and Related Dementias. African Journal of Primary Health Care & Family Medicine, 14, a3448. https://doi.org/10.4102/phcfm.v14i1.3448
[59]
Quansah, E. and Karikari, T.K. (2016) Neuroscience-Related Research in Ghana: A Systemic Evaluation of Direction and Capacity. Metabolic Brain Disease, 31, 11-24. https://doi.org/10.1007/s11011-015-9724-7
[60]
Spittel, S., Kraus, E., Maier, A. and Wolf-Osterman, K. (2018) Healthcare Challenges of Older People with and without Dementia in Ghana: An Exploratory Pilot Study. International Journal on Ageing in Developing Countries, 3, 116-131. https://www.inia.org.mt/wp-content/uploads/2019/07/3.2-Full-Final_compressed-1.pdf#page=10
[61]
Aminoff, B.F. and Adunsky, A. (2004) Dying Dementia Patients: Too Much Suffering, Too Little Palliation. American Journal of Alzheimer’s Disease & Other Dementias, 4, 243-247. https://doi.org/10.1177/153331750401900402
[62]
Coleman, A.M.E. (2019) The Ethics of Psychiatric Care and Research in Resource Poor Settings: The Case of a Research Trial in a Prayer Camp in Ghana. Indian Journal of Medical Ethics, 4, 139-143. https://doi.org/10.20529/IJME.2019.004
[63]
Tronto, J.C. (2001) An Ethics of Care. In: Holstein, M.B. and Mitzen, P., Eds., Ethics in Community-Based Elder Care, Springer, New York, 60-68.
[64]
Arbour L. (2008) The Responsibility to Protect as a Duty of Care in International Law and Practice. Review of International Studies, 34, 445-458. https://doi.org/10.1017/S0260210508008115
[65]
Banerjee, D., Rabheru, K., Ivbijaro, G. and Mendonca, L.C. (2021) Dignity of Older Persons with Mental Conditions: Why Should the Clinician Care? Frontiers in Psychiatry, 12, Article 774533. https://doi.org/10.3389/fpsyt.2021.774533
[66]
Alzheimer’s Disease International (2023) World Alzheimer Report 2023. Reducing Dementia Risk: Never Too Early, Never Too Late. https://www.alzint.org/resource/world-alzheimer-report-2023/