Salud Mental

Caregiver Burden among Caregivers of Older Adults with Alzheimer’s Disease Impairs their Quality of Life: A Cross-sectional Study in Brazil

##plugins.themes.bootstrap3.article.main##

Chia Chen Lin
Izabela Vitória Pereira Marques
José Roberto Andrade do Nascimento Júnio
Caroline Rodrigues Lyra
Eduardo Quadros da Silva
Daniel Vicentini de Oliveira

Abstract

Introduction. The role of caregivers of older adults with Alzheimer’s disease is crucial but often challenging.

Objective. To determine whether the increased burden of care among caregivers of older adults with Alzheimer’s disease negatively impacts their perceived quality of life.

Method. This is a cross-sectional study of 126 caregivers using the Zarit Caregiver Burden Interview and WHOQOL-Bref. Data analysis included the Kolmogorov-Smirnov test, skewness and kurtosis coefficients, bootstrap procedures, Pearson correlation, simple linear regression analysis, Pearson’s Chi-square test, and One-Way ANOVA together with Tukey’s Post-Hoc test (p < .05).

Results. The burden level explained a significant degree of caregivers’ perceived quality of life (p < .01), with a significant negative prediction across all quality of life domains (β = -.48 to -.62).

Discussion and conclusion. Higher burden levels compromise caregivers’ perceived quality of life.

Keywords:
Aging, home care service, dementia, quality of life

References

Alonso‐Cortés, B., González‐Cabanach, R., & Seco‐Calvo, J. (2020). Involvement in self‐care and psychological well‐being of Spanish family caregivers of relatives with dementia. Health & Social Care in the Community, 29(5), 1308-1316. https://doi.org/10.1111/hsc.13171

Bernardo, L. D., & Raymundo, T. M. (2018). Ambiente físico e social no processo de intervenção terapêutico ocupacional para idosos com Doença de Alzheimer e seus cuidadores: uma revisão sistemática da literatura/Physical and social environment in the occupational therapeutic intervention process for elderly with Alzheimer’s disease and their caregivers: a systematic review of the literature. Cadernos Brasileiros De Terapia Ocupacional, 26(2), 463–477. https://doi.org/10.4322/2526-8910.ctoAO1064

Chandran, D. R. (2021). A Short Review of the Literature on Assistive Technologies for Alzheimer’s Patients and Their Caregivers. Advances in Alzheimer’s Disease, 11(4). 48-64. https://doi.org/10.4236/aad.2022.114005

Cheng, S. (2017). Dementia Caregiver Burden: a Research Update and Critical Analysis. Current Psychiatry Reports, 19(9), https://doi.org/10.1007/s11920-017-0818-2

Connors, M. H., Seeher, K., Teixeira‐Pinto, A., Woodward, M., Ames, D., & Brodaty, H. (2019). Dementia and caregiver burden: A three‐year longitudinal study. International Journal of Geriatric Psychiatry, 35(2), 250–258. https://doi.org/10.1002/gps.5244

Cruz, M. D. N., & Hamdan, A.C. (2008). O impacto da doença de Alzheimer no cuidador. Psicologia em Estudo, 13(2), 223-229 https://doi.org/10.1590/s1413-73722008000200004

Delfino, L. L., Komatsu, R. S., Komatsu, C., Neri, A. L., & Cachioni, M. (2018). Path analysis of caregiver characteristics and neuropsychiatric symptoms in Alzheimer's disease patients. Geriatrics & Gerontology International, 18(8), 1177–1182. https://doi.org/10.1111/ggi.13437

Duplantier, S. C., & Williamson, F. A. (2023). Barriers and Facilitators of Health and Well-Being in Informal Caregivers of Dementia Patients: A Qualitative Study. International Journal of Environmental Research and Public Health, 20(5), 4328. https://doi.org/10.3390/ijerph20054328

Durán-Gómez, N., Guerrero-Martín, J., Pérez-Civantos, D., López Jurado, C. F., Palomo-López, P., & Cáceres, M. C. (2020). Understanding Resilience Factors Among Caregivers of People with Alzheimer’s Disease in Spain. Psychology Research and Behavior Management, 13, 1011–1025. https://doi.org/10.2147/prbm.s274758

El Haj, M., Jardri, R., Larøi, F., & Antoine, P. (2016). Hallucinations, loneliness, and social isolation in Alzheimer's disease. Cognitive Neuropsychiatry, 21(1), 1-13. https://doi.org/10.1080/13546805.2015.1121139

Elagamey, M., Elmatty, G. M. A., Gida, N. I. M., & Mohammed, M. M. (2022). Burden assessment and quality of life among caregivers for Alzheimer’s patients. Port Said Scientific Journal of Nursing, 9(3), 138-159. https://doi.org/10.21608/pssjn.2022.124614.1181

Fagerström, C., Elmståhl, S., & Wranker, L. S. (2020). Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: A cross-sectional cohort study. Health and Quality of Life Outcomes, 18(1). https://doi.org/10.1186/s12955-020-01321-3

Farina, N., Page, T. E., Daley, S., Brown, A., Bowling, A., Basset, T., Livingston, G., Knapp, M., Murray, J., & Banerjee, S. (2017). Factors associated with the quality of life of family carers of people with dementia: A systematic review. Alzheimer's & Dementia, 13(5), 572-581. https://doi.org/10.1016/j.jalz.2016.12.010

Falcão, D., Braz, M., Garcia, C., Santos, G., Yassuda, M., Cachioni, M., Nunes, P., & Forlenza, O. (2018). Atenção psicogerontológica aos cuidadores familiares de idosos com doença de Alzheimer. Psicologia, Saúde & Doenças, 19(2), 377-389. https://doi.org/10.15309/18psd190217

Family Caregiver Alliance. (2020). National Policy Statement. https://www.caregiver.org/national-policy-statement

Fleck, M. P. A., Louzada, S., Xavier, M., Chachamovich, E., Vieira, G., Santos, L., & Pinzon, V. (2000). Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida "WHOQOL-bref". Revista de Saúde Pública, 34(2), 178-183.

Furegato, A. R. F., & Santos, J. L. F. (2012). Perfil de cuidadores de idosos com doença de Alzheimer associado à resiliência. Texto & Contexto - Enfermagem, 21(1), 150-157. https://doi.org/10.1590/s0104-07072012000100017

Gale, S.A., Acar, D., & Daffner, K.R. (2018). Dementia. The American Journal of Medicine, 131(10), 1161-1169. https://doi.org/10.1016/j.amjmed.2018.01.022

Gutierrez, D. M. D., Sousa, G. S. D., Figueiredo, A. E. B., Ribeiro, M. D. N. D. S., Diniz, C. X., & Nobre, G. A. S. S. (2021). Vivências subjetivas de familiares que cuidam de idosos dependentes. Ciência & Saúde Coletiva, 26(1), 47-56. https://doi.org/10.1590/1413-81232020261.30402020

Han, S., Chi, N., Han, C., Oliver, D. P., Washington, K., & Demiris, G. (2019). Adapting the Resilience Framework for Family Caregivers of Hospice Patients With Dementia. American Journal of Alzheimer's Disease & Other Dementias®, 34(6), 399-411. https://doi.org/10.1177/1533317519862095

Haukoos, J. S., & Lewis, R. J. (2005). Advanced Statistics: Bootstrapping Confidence Intervals for Statistics with “Difficult” Distributions. Academic Emergency Medicine, 12(4), 360-365. https://doi.org/10.1197/j.aem.2004.11.018

Hellis, E., & Mukaetova-Ladinska, E. B. (2022). Informal Caregiving and Alzheimer’s Disease: The Psychological Effect. Medicina, 59(1), 48. https://doi.org/10.3390/medicina59010048

Ibrahim, A. M., Ibrahim, M. M., & Zaghamir, D. E. F. (2024). Burden of care and quality of life among informal caregivers to Alzheimer patients in Egypt. Palliative and Supportive Care, 22(1), 182-189. https://doi.org/10.1017/s1478951523000573

Kawaharada, R., Sugimoto, T., Matsuda, N., Tsuboi, Y., Sakurai, T., & Ono, R. (2019). Impact of loss of independence in basic activities of daily living on caregiver burden in patients with Alzheimer's disease: A retrospective cohort study. Geriatrics & Gerontology International, 19(12), 1243-1247. https://doi.org/10.1111/ggi.13803

Kekli̇Kçi̇, O., Topal, K., Gerekli̇Oğlu, Ç., & Aksoy, H. (2023). Influence of Care Burden-related Factors on Mental Health and Quality of Life of the Caregivers of Dementia Patients. Journal Of Basic And Clinical Health Sciences, 7(1), 10-17. https://doi.org/10.30621/jbachs.915418

Khan, S., Barve, K. H., & Kumar, M. S. (2020). Recent Advancements in Pathogenesis, Diagnostics and Treatment of Alzheimer’s Disease. Current Neuropharmacology, 18(11), 1106-1125. https://doi.org/10.2174/1570159x18666200528142429

Kim, B., Noh, G. O., & Kim, K. (2021). Behavioural and psychological symptoms of dementia in patients with Alzheimer's disease and family caregiver burden: A path analysis. BMC Geriatrics, 21(1), 160. https://doi.org/10.1186/s12877-021-02109-w

Luzardo, A. R., Gorini, M. I. P. C., & Silva, A. P. S. S. D. (2006). Características de idosos com doença de Alzheimer e seus cuidadores: uma série de casos em um serviço de neurogeriatria. Texto & Contexto - Enfermagem, 15(4), 587-594. https://doi.org/10.1590/s0104-07072006000400006

Mattos, E. B. T., Oliveira, J. P., & Novelli, M. M. P. C. (2020). As demandas de cuidado e autocuidado na perspectiva do cuidador familiar da pessoa idosa com demência. Revista Brasileira de Geriatria e Gerontologia, 23(3), https://doi.org/10.1590/1981-22562020023.200189

Monfared, A. A. T., Stern, Y., Doogan, S., Farid, N., Karahan, E., & Zhang, Q. (2023). Understanding the impact of social stigma on the patient journey in Alzheimer’s disease through social media narratives. Alzheimer’s & Dementia:The Journal of the Alzheimer’s Association, 19(S5). https://doi.org/10.1002/alz.063148

Nascimento, H. G. D., & Figueiredo, A. E. B. (2019). Demência, familiares cuidadores e serviços de saúde: o cuidado de si e do outro. Ciência & Saúde Coletiva, 24(4), 1381-1392. https://doi.org/10.1590/1413-81232018244.01212019

Paschalidis, M., Konstantyner, T. C. R. D. O., Simon, S. S., & Martins, C. B. (2023). Trends in mortality from Alzheimer’s disease in Brazil, 2000-2019. Epidemiologia e Serviços de Saúde, 32(2), https://doi.org/10.1590/s2237-96222023000200002

Peixoto, J. M., Rabelo, I. D. O., Araújo, J. R. C. L., Silva, J. M., Pereira, K. C., Vieira, D., & Morais, T. A. D. (2022). Sobrecarga laboral e qualidade de vida em cuidadores de idosos institucionalizados em Araguari - MG. Brazilian Journal of Health Review, 5(4), 13973-13989. https://doi.org/10.34119/bjhrv5n4-165

Pinyopornpanish, M., Pinyopornpanish, K., Soontornpun, A., Tanprawate, S., Nadsasarn, A., Wongpakaran, N., & Wongpakaran, T. (2021). Perceived stress and depressive symptoms not neuropsychiatric symptoms predict caregiver burden in Alzheimer’s disease: a cross-sectional study. BMC Geriatrics, 21(1), https://doi.org/10.1186/s12877-021-02136-7

Pinyopornpanish, K., Soontornpun, A., Wongpakaran, T., Wongpakaran, N., Tanprawate, S., Pinyopornpanish, K., Nadsasarn, A., & Pinyopornpanish, M. (2022). Impact of behavioral and psychological symptoms of Alzheimer's disease on caregiver outcomes. Scientific Reports, 12(1), 14138. https://doi.org/10.1038/s41598-022-18470-8

Pudelewicz, A., Talarska, D., & Bączyk, G. (2019). Burden of caregivers of patients with Alzheimer's disease. Scandinavian Journal of Caring Sciences, 33(2), 336-341. https://doi.org/10.1111/scs.12626

Rosende-Roca, M., Cañabate, P., Moreno, M., Preckler, S., Seguer, S., Esteban, E., Tartari, J. P., Vargas, L., Narvaiza, L., Pytel, V., Bojaryn, U., Alarcon, E., González-Pérez, A., Gurruchaga, M. J., Tárraga, L., Ruiz, A., Marquié, M., Boada, M., & Valero, S. (2022). Sex, Neuropsychiatric Profiles, and Caregiver Burden in Alzheimer’s Disease Dementia: A Latent Class Analysis. Journal of Alzheimer's Disease, 89(3), 993-1002. https://doi.org/10.3233/jad-215648

Rosa, R. D. L. D., Simões-Neto, J. P., Santos, R. L., Torres, B., Baptista, M. A. T., Kimura, N. R. S., & Dourado, M. C. N. (2020). Caregivers' resilience in mild and moderate Alzheimer's disease. Aging & Mental Health, 24(2), 250-258 https://doi.org/10.1080/13607863.2018.1533520

Rozani, V., Pilko, A., & Kagan, I. (2022). Provision of integrated care by a National Call Support Program for Alzheimer’s patients and their caregivers. International Journal of Integrated Care, 22, https://doi.org/10.5334/ijic.icic22294

Shafizadeh, A., Mirzaee, A., Heravi-Karimooi, M., Rejeh, N., Nia, H.S., Montazari, A. (2020). Relationship between Caregiver Burden and Demographic Characteristics in Caregivers of Alzheimer's Elderly. Journal of Nursing Education, 9(1), 61–70. https://sid.ir/paper/389273/en

Shea, Y. F., Shum, C. K., Wan, W. H., & Chan, M. M. K. (2020). Worsening behavioural and psychological symptoms of dementia during the coronavirus disease 2019 pandemic. Psychogeriatrics, 20(6), 916-917. https://doi.org/10.1111/psyg.12608

Silva, P. V. D. C., Silva, C. M. P. D., & Silveira, E. A. A. D. (2023). A família e o cuidado de pessoas idosas com doença de Alzheimer: revisão de escopo. Escola Anna Nery, 27, https://doi.org/10.1590/2177-9465-ean-2022-0313pt

Sklavou, K., & Sarathanou, F. (2022). The difference of the quality of life between formal/professional and informal/nonprofessional caregivers to patients with Alzheimer’s disease. Hellenic Journal of Nursing Science, 51-59. https://doi.org/10.24283/hjns.202225

Srivastava, S., Ahmad, R., & Khare, S. K. (2021). Alzheimer’s disease and its treatment by different approaches: A review. European Journal of Medicinal Chemistry, 216, 113320. https://doi.org/10.1016/j.ejmech.2021.113320

Talib, A., Malik, S., & Yasin, S. A. (2021). Problems Faced by Caregivers of Alzheimer’s Patients. Pakistan Journal of Psychological Research, 36(3), 397-411. https://doi.org/10.33824/pjpr.2021.36.3.22

Taub, A., Andreoli, S. B., & Bertolucci, P. H. (2004). Dementia caregiver burden: Reliability of the Brazilian version of the Zarit caregiver burden interview. Cadernos de Saúde Pública, 20(2), 372-376. https://doi.org/10.1590/s0102-311x2004000200004

Villarejo-Galende, A., García-Arcelay, E., Piñol-Ripoll, G., del Olmo-Rodríguez, A., Viñuela, F., Boada, M., Franco-Macías, E., Ibañez de la Peña, A., Riverol, M., Puig-Pijoan, A., Abizanda-Soler, P., Arroyo, R., Baquero-Toledo, M., Feria-Vilar, I., Balasa, M., Berbel, Á., Rodríguez-Rodríguez, E., Vieira-Campos, A., García-Ribas, G., Rodrigo-Herrero, S., Terrancle, Á., Prefasi, D., Lleó, A., & Maurino, J. (2022). Quality of Life and the Experience of Living with Early-Stage Alzheimer’s Disease. Journal of Alzheimer's Disease, 90(2), 719-726. https://doi.org/10.3233/jad-220696

Vu, M., Mangal, R., Stead, T., Lopez-Ortiz, C., & Ganti, L. (2022). Impact of Alzheimer’s Disease on Caregivers in the United States. Health Psychology Research, 10(3), https://doi.org/10.52965/001c.37454

Yakubu, Y. A., & Schutte, D. W. (2019). Socio-economic determinants and environmental hygiene factors of female caregiver burden in two selected low-income communities in Cape Town, South Africa. Pan African Medical Journal, 34, 80. https://doi.org/10.11604/pamj.2019.34.80.16719

Zahed, S., Zamani-Alavijeh, F., Emami, M., Eslami, A., Barekatain, M., & Hassanzadeh, A. (2020). Stress as a challenge in promoting mental health among dementia caregivers. Journal of Education and Health Promotion, 9(1), 65. https://doi.org/10.4103/jehp.jehp_445_19

Zhang, Y., Tatewaki, Y., Liu, Y., Tomita, N., Nagasaka, T., Muranaka, M., Yamamoto, S., Takano, Y., Nakase, T., Mutoh, T., & Taki, Y. (2022). Perceived social isolation is correlated with brain structure and cognitive trajectory in Alzheimer's disease. GeroScience, 44(3), 1563-1574. https://doi.org/10.1007/s11357-022-00584-6

Zhang, X., Tian, Y., Wang, Z., Ma, Y., Tan, L., & Yu, J. (2021). The Epidemiology of Alzheimer's Disease Modifiable Risk Factors and Prevention. The Journal of Prevention of Alzheimer's Disease, 8(3), 313-321. https://doi.org/10.14283/jpad.2021.15

Zvěřová, M. (2019). Clinical aspects of Alzheimer's disease. Clinical Biochemistry, 72, 3-6. https://doi.org/10.1016/j.clinbiochem.2019.04.015