Behavioral and psycho-social impairments among people living with dementia and their management by caregivers in South-Western Uganda: a qualitative study

References

• Abaasa, C., Obua, C., Wakida, E. K., & Rukundo, G. Z. (2021). A qualitative investigation of the psychosocial services utilised by care-givers of patients with Alzheimer’s disease and related dementias in southwestern Uganda. Ageing & Society, 1–14. https://doi.org/10.1017/S0144686X21001276
   Google Scholar
• Adonteng-Kissi, B., Moyle, W., & Grealish, L. (2022). Informal care of older adults with chronic life-limiting illness in Africa: An integrative review. International Social Work, 65(1), 127–141. https://doi.org/10.1177/0020872819901164
   Google Scholar
• Ainamani, H. E., Alele, P. E., Rukundo, G. Z., Maling, S., Wakida, E. K., Obua, C., & Tsai, A. C. (2020). Caregiving burden and mental health problems among family caregivers of people with dementia in rural Uganda. Global Mental Health (Cambridge, England), 7, e13. https://doi.org/10.1017/gmh.2020.7
   PubMedGoogle Scholar
• Allen, A. P., Buckley, M. M., Cryan, J. F., Ní Chorcoráin, A., Dinan, T. G., Kearney, P. M., O'Caoimh, R., Calnan, M., Clarke, G., & Molloy, D. W. (2019). Informal caregiving for dementia patients: The contribution of patient characteristics and behaviours to caregiver burden. Age and Ageing, 49(1), 52–56. https://doi.org/10.1093/ageing/afz128
   PubMed Web of Science ®Google Scholar
• Alzheimer’s Disease International. (2021). About Alzheimer’s & dementia. https://www.alzint.org/about/
   Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. [Database] https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Connors, M. H., Seeher, K., Teixeira-Pinto, A., Woodward, M., Ames, D., & Brodaty, H. (2020). Dementia and caregiver burden: A three-year longitudinal study. International Journal of Geriatric Psychiatry, 35(2), 250–258.
   PubMed Web of Science ®Google Scholar
• Crellin, N. E., Orrell, M., McDermott, O., & Charlesworth, G. (2014). Self-efficacy and health-related quality of life in family carers of people with dementia: A systematic review. Aging & Mental Health, 18(8), 954–969.
   PubMed Web of Science ®Google Scholar
• Darby, R. R., & Dickerson, B. C. (2017). Dementia, decision-making, and capacity. Harvard Review of Psychiatry, 25(6), 270–278.
   PubMed Web of Science ®Google Scholar
• Davis, M., O Connell, T., Johnson, S., Cline, S., Merikle, E., Martenyi, F., & Simpson, K. (2018). Estimating Alzheimer’s disease progression rates from normal cognition through mild cognitive impairment and stages of dementia. Current Alzheimer Research, 15(8), 777–788.
   PubMed Web of Science ®Google Scholar
• de Mendonça, A., Ribeiro, F., Guerreiro, M., & Garcia, C. (2004). Frontotemporal mild cognitive impairment. Journal of Alzheimer’s Disease: JAD, 6(1), 1–9.
   PubMedGoogle Scholar
• Downs, M., & Collins, L. (2015). Person-centred communication in dementia care. Nursing Standard (Royal College of Nursing (Great Britain): 1987), 30(11), 37–41. https://doi.org/10.7748/ns.30.11.37.s45
   PubMedGoogle Scholar
• Essuman, A., Agyemang, F. A., & Mate-Kole, C. C. (2018). Long-term care for older adults in Africa: Whither now? Journal of the American Medical Directors Association, 19(9), 728–730. https://doi.org/10.1016/j.jamda.2018.07.012
   PubMed Web of Science ®Google Scholar
• Evans, N., & Collier, L. (2019). An exploration of the experience of using calendar reminders for people with dementia and family carers. Dementia (London, England), 18(5), 1912–1933. https://doi.org/10.1177/1471301217734916
   PubMedGoogle Scholar
• Fazio, S., Pace, D., Flinner, J., & Kallmyer, B. (2018). The fundamentals of person-centered individuals with dementia. The Gerontologist, 58(suppl_1), S10–S19. https://doi.org/10.1093/geront/gnx122
   PubMed Web of Science ®Google Scholar
• Fernández, M., Gobartt, A. L., & Balañá, M., The COOPERA Study Group. (2010). Behavioural symptoms in patients with Alzheimer’s disease and their association with cognitive impairment. BMC Neurology, 10(1), 1–9. https://doi.org/10.1186/1471-2377-10-87
   PubMedGoogle Scholar
• Finkel, S. I., e Silva, J. C., Cohen, G., Miller, S., & Sartorius, N. (1997). Behavioral and psychological signs and symptoms of dementia: A consensus statement on current knowledge and implications for research and treatment. International Psychogeriatrics, 8(S3), 497–500. https://doi.org/10.1017/S1041610297003943
   Google Scholar
• Gibson, A., Holmes, S. D., Fields, N. L., & Richardson, V. E. (2019). Providing care for persons with dementia in rural communities: Informal caregivers’ perceptions of supports and services. Journal of Gerontological Social Work, 62(6), 630–648.
   PubMed Web of Science ®Google Scholar
• Green, J., & Thorogood, N. (2018). Qualitative methods for health research. London: Sage.
   Google Scholar
• Jia, L., Du, Y., Chu, L., Zhang, Z., Li, F., Lyu, D., Li, Y., Li, Y., Zhu, M., Jiao, H., Song, Y., Shi, Y., Zhang, H., Gong, M., Wei, C., Tang, Y., Fang, B., Guo, D., Wang, F., … Jia, J., COAST Group. (2020). Prevalence, risk factors, and management of dementia and mild cognitive impairment in adults aged 60 years or older in China: A cross-sectional study. The Lancet. Public Health, 5(12), e661–e671. https://doi.org/10.1016/S2468-2667(20)30185-7
   PubMed Web of Science ®Google Scholar
• Jiang, F., Kong, F., & Li, S. (2021). The association between social support and cognitive impairment among the urban elderly in Jinan, China. Healthcare, 9(11), 1443. https://www.mdpi.com/2227-9032/9/11/1443 https://doi.org/10.3390/healthcare9111443
   Google Scholar
• Kales, H. C., Gitlin, L. N., & Lyketsos, C. G. (2015). Assessment and management of behavioral and psychological symptoms of dementia. BMJ (Clinical Research ed.), 350, h369. https://doi.org/10.1136/bmj.h369
   PubMed Web of Science ®Google Scholar
• Kang, B., Karel, M. J., Corazzini, K. N., & McConnell, E. S. (2021). A mixed methods study on the manifestations of behavioural symptoms of dementia among veterans with and without posttraumatic stress disorder. Journal of Advanced Nursing, 77(7), 3176–3188.
   PubMed Web of Science ®Google Scholar
• Lawlor, B. A. (2004). Behavioral and psychological symptoms in dementia: The role of atypical antipsychotics. Journal of Clinical Psychiatry, 65, 5–10.
   PubMedGoogle Scholar
• Leggett, A. N., Bugajski, B. C., Gitlin, L. N., & Kales, H. C. (2021). Characterizing dementia caregiver style in managing care challenges: Cognitive and behavioral components. Dementia (London, England), 20(6), 2188–2204. https://doi.org/10.1177/1471301220988233
   PubMedGoogle Scholar
• Lloyd, J., Muers, J., Patterson, T. G., & Marczak, M. (2019). Self-compassion, coping strategies, and caregiver burden in caregivers of people with dementia. Clinical Gerontologist, 42(1), 47–59.
   PubMed Web of Science ®Google Scholar
• Lopes Ibanez-Gonzalez, D., & Tollman, S. M. (2015). Clinics and churches: Lifeworlds and health-seeking practices of older women with noncommunicable disease in rural South Africa. BMC International Health and Human Rights, 15(1), 12–12.
   PubMedGoogle Scholar
• Lyketsos, C. G., Carrillo, M. C., Ryan, J. M., Khachaturian, A. S., Trzepacz, P., Amatniek, J., … Miller, D. S. (2011). Neuropsychiatric symptoms in Alzheimer’s disease. Alzheimer’s & Dementia, 7, 532–539.
   Google Scholar
• Majer, R., Simon, V., Csiba, L., Kardos, L., Frecska, E., & Hortobágyi, T. (2019). Behavioural and psychological symptoms in neurocognitive disorders: Specific patterns in dementia subtypes. Open Medicine (Warsaw, Poland), 14(1), 307–316. https://doi.org/10.1515/med-2019-0028
   PubMedGoogle Scholar
• Mayston, R., Lloyd-Sherlock, P., Gallardo, S., Wang, H., Huang, Y., Montes de Oca, V., Ezeah, P., Guerra, M., Sosa, A. L., Liu, Z., Uwakwe, R., Guerchet, M. M., & Prince, M. (2017). A journey without maps—Understanding the costs of caring for dependent older people in Nigeria, China, Mexico and Peru. PLoS One, 12(8), e0182360. https://doi.org/10.1371/journal.pone.0182360
   PubMedGoogle Scholar
• McNiel, P., & Westphal, J. (2018). Namaste Care™: A person-centered care approach for Alzheimer’s and advanced dementia. Western Journal of Nursing Research, 40(1), 37–51.
   PubMed Web of Science ®Google Scholar
• Mendez, M. F., Anderson, E., & Shapira, J. S. (2005). An investigation of moral judgement in frontotemporal dementia. Cognitive and Behavioral Neurology, 18(4), 193–197.
   PubMed Web of Science ®Google Scholar
• Mohs, R. C., Doody, R. S., Morris, J. C., Ieni, J. R., Rogers, S. L., Perdomo, C. A., & Pratt, R. D., "312" Study Group. (2001). A 1-year, placebo-controlled preservation of function survival study of donepezil in AD patients. Neurology, 57(3), 481–488. https://doi.org/10.1212/wnl.57.3.481
   PubMed Web of Science ®Google Scholar
• Mubangizi, V., Maling, S., Obua, C., & Tsai, A. C. (2020). Prevalence and correlates of Alzheimer’s disease and related dementias in rural Uganda: Cross-sectional, population-based study. BMC Geriatrics, 20(1), 48. https://doi.org/10.1186/s12877-020-1461-z
   PubMed Web of Science ®Google Scholar
• O’Neill, S. A., Mason, S., Parente, G., Donnelly, M. P., Nugent, C. D., McClean, S., Scotney, B., & Craig, D. (2011). Video reminders as cognitive prosthetics for people with dementia. Ageing International, 36(2), 267–282. https://doi.org/10.1007/s12126-010-9089-5
   Google Scholar
• Olasoji, M., Maude, P., & McCauley, K. (2017). Not sick enough: Experiences of carers of people with mental illness negotiating care for their relatives with mental health services. Journal of Psychiatric and Mental Health Nursing, 24(6), 403–411. https://doi.org/10.1111/jpm.12399
   PubMed Web of Science ®Google Scholar
• Olayinka, O. O., & Mbuyi, N. N. (2014). Epidemiology of dementia among the elderly in Sub-Saharan Africa. International Journal of Alzheimer’s Disease, 2014, 195750. https://doi.org/10.1155/2014/195750
   PubMedGoogle Scholar
• Prince, M. J., Wimo, A., Guerchet, M. M., Ali, G. C., Wu, Y.-T., & Prina, M. (2015). The global impact of dementia: An analysis of prevalence, incidence, cost and trends. World Alzheimer Report 2015.
   Google Scholar
• Shah, R. S., Lee, H.-G., Xiongwei, Z., Perry, G., Smith, M. A., & Castellani, R. J. (2008). Current approaches in the treatment of Alzheimer’s disease. Biomedicine & Pharmacotherapy, 62(4), 199–207. https://doi.org/10.1016/j.biopha.2008.02.005
   PubMed Web of Science ®Google Scholar
• Steinberg, M., Shao, H., Zandi, P., Lyketsos, C. G., Welsh-Bohmer, K. A., Norton, M. C., Breitner, J. C. S., Steffens, D. C., & Tschanz, J. T., Cache County Investigators. (2008). Point and 5-year period prevalence of neuropsychiatric symptoms in dementia: The Cache County Study. International Journal of Geriatric Psychiatry, 23(2), 170–177. https://doi.org/10.1002/gps.1858
   PubMed Web of Science ®Google Scholar
• Thies, W., & Bleiler, L. (2012). 2012 Alzheimer’s disease facts and figures Alzheimer’s Association∗. Alzheimer’s & Dementia, 8(2), 131–168. https://doi.org/10.1016/j.jalz.2012.02.001
   PubMed Web of Science ®Google Scholar
• UBOS. (2016). The National Population and Housing Census 2014 - Main report. Uganda Bureau of Statistics.
   Google Scholar
• UBOS. (2020). Statistical abstract. https://www.ubos.org/wp-content/uploads/publications/11_2020STATISTICAL__ABSTRACT_2020.pdf
   Google Scholar
• UBOS. (2021). Uganda National Survey Report 2019/2020. Kampala Uganda. UBOS. https://www.ubos.org/wp-content/uploads/publications/09_2021Uganda-National-Survey-Report-2019-2020.pdf
   Google Scholar
• World Health Organization. (2021). Fact sheet on dementia. World Health Organisation.
   Google Scholar