Analysis of the burden of caregivers of older adults with Alzheimer's disease: cross-sectional study
Análise da sobrecarga de cuidadores de idosos com Doença de Alzheimer: estudo transversal
Abstract
This cross-sectional study aimed to analyze the level of burden of 126 home caregivers of older adults with Alzheimer's disease, in addition to associating it with sociodemographic, health and professional performance variables. A questionnaire was used to assess the sociodemographic, health and care profile of the older adults, and also the Zarit Overload Inventory. Data collection took place between February and May 2023. Data analysis was performed using Pearson's Chi-square test (p<0.05). We found a higher frequency of intense burden in caregivers who care older adults for more than 12 hours a day (p=0.015), live with older adults (p<0.001), perform informal care (p < 0.001), care for older adults who were diagnosed no more than four years ago (p=0.047) and older adults who have a Chronic Non-Communicable Disease associated with Alzheimer (p=0.006). Caregivers who experience greater burden devote more time to care, live with the patient, and provide comprehensive informal care.References
Mattosa EBT, Kovácsb MJ. Doença de Alzheimer: a experiência única de cuidadores familiares. Psicol USP. 2020;31. https://doi.org/10.1590/0103-6564e180023.
Marques YS, Casarin F, Huppes B, Maziero BR, Gehlen MH, Ilha S. Alzheimer’s disease in the elderly person/family: potentialities, weaknesses and strategies Cogitare Enferm. 2022;27. http://dx.doi.org/10.5380/ce.v27i0.80169.
2022 Alzheimer's Disease Facts and Figures. Alzheimers Dement. 2022;18(4):700–89. https://doi.org/10.1002/alz.12638.
Alzheimer’s Disease International. World Alzheimer Report 2019. Attitudes to dementia, 2019. https://www.alz.co.uk/research/ WorldAlzheimerReport2019.pdf
Dadalto EV, Cavalcante FG. O lugar do cuidador familiar de idosos com doença de Alzheimer: uma revisão de literatura no Brasil e Estados Unidos. Ciênc Saúde Colet. 2021;26(1):147-57. https://doi.org/10.1590/1413-81232020261.38482020.
Piovesan EC, Freitas BZ, Lemanski FCB, Carazzo CA. Alzheimer’s disease: an epidemiological analysis over the number of hospitalizations and deaths in Brazil. Arq Neuropsiquiatr. 2023;81(6):577-84. https://doi.org/10.1055/s-0043-1767827.
Mendes GA, Faustino AM, Santos CTB, Cruz KCT. Support for family care of aged people with dementia Braz J Dev. 2020;6(10):76828-39. https://doi.org/10.34117/bjdv6n10-201.
Moreira VS, Chaves MLF, de Castilhos RM, Olchik MR. Caregiver burden related to feeding process in Alzheimer's disease. Dement Neuropsychol. 2023;17. https://doi.org/10.1590/1980-5764-DN-2022-0092.
Taub A, Andreoli SB, Bertolucci PH. Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview. Cad Saúde Pública, 2004;20(2):372-376. https://doi.org/10.1590/S0102-311X2004000200004
Silva MR, Carvalho LRB, Barjud LE; Silva Filho ML. Doença de Alzheimer: Estratégias de cuidado diante das dificuldades ao portador e cuidador. BJIHS. 2023;5(3):164-91. https://doi.org/10.36557/2674-8169.2023v5n4p164-191
Silva PVC, Silva CMP, Silveira EAA. Family and the care of older adults with Alzheimer disease: a scoping review. Esc Anna Nery Rev Enferm. 2023;27. https://doi.org/10.1590/2177-9465-EAN-2022-0313en.
Kawano Y, Terada S, Takenoshita S, Hayashi S, Oshima Y, Miki T. et al. Patient affect and careguiver burden in dementia. Psychogeriatrics. 2020;20(2). https://doi.org/10.1111/psyg.12487.
Pinyopornpanish K, Soontornpun A, Wongpakaran T, Wongpakaran N, Tanprawate S, Pinyopornpanish K. et al. Impact of behavioral and psychological symptoms of Alzheimer’s disease on caregiver outcomes. Sci Rep. 2022;12(1). https://doi.org/10.1038/s41598-022-18470-8.
Isik AT, Soysal P, Solmi M, Veronese N. Bidirectional relationship between caregiver burden and neuropsychiatric symptoms in patients with Alzheimer`s disease: A narrative review. Int J Geriatr Psychiatry. 2019;34(9):1326-34. https://doi.org/10.1002/gps.4965.
Wang Z, Ma Z, Han H, He R, Zhou L, Liang R. et al. Caregiver burden in Alzheimer`s disease: Moderation effects of social support and mediation effects of positive aspects of caregiving. Int J Geriatr Psychiatry. 2018;33(9). https://doi.org/10.1002/gps.4910
Froelich L, Lladó A, Khandker RK, Pedrós M, Black CM, Sánchez Díaz EJ. et al. Quality of Life and Caregiver Burden of Alzheimer's Disease Among Community Dwelling Patients in Europe: Variation by Disease Severity and Progression. J Alzheimers Dis Rep. 2021;5(1):791-804. https://doi.org/10.3233/ADR-210025.
Yin X, Xie Q, Huang L, Liu L, Armstrong E, Zhen M. et al. Assessment of the Psychological Burden Among Family Caregivers of People Living with Alzheimer's Disease Using the Zarit Burden Interview. J Alzheimers Dis. 2021;82(1):285-91. doi: 10.3233/JAD-210025.
Queiroz RS, Camacho ACLF, Gurgel JL, Assis CRC, Santos LM, Santos MLSC. Sociodemographic profile and quality of life of caregivers of elderly people with dementia. Rev Bras Geriatr Gerontol. 2018;21(2). https://doi.org/10.1590/1981-22562018021.170170.
Martins G, Corrêa L, Caparrol AJS, Santos PTA, Brugnera LM, Gratão ACM. Sociodemographic and health characteristics of formal and informal caregivers of elderly people with Alzheimer’s Disease. Esc Anna Nery Rev Enferm. 2019;23(2). https://doi.org/10.1590/2177-9465-EAN-2018-0327.
Loo YX, Yan S, Low LL. Caregiver burden and its prevalence, measurement scales, predictive factors and impact: a review with an Asian perspective. Singapore Med J. 2022;63(10):593-603. https://doi.org/10.11622/smedj.2021033.
Resende-Roca, M, Cañabate P, Moreno M, Preckler S, Seguer S, Esteban E. et al. Sex, Neuropsychiatric Profiles, and Caregiver Burden in Alzheimer’s Disease Dementia: A Latent Class Analysis. J Alzheimer's Dis. 2022;89(3):993-1002. https://doi.org/10.3233/JAD-215648.
Moreira VS, Chaves MLF, Castilhos RM, Ollchik MR. Caregiver burden related to feeding process in Alzheimer`s disease. Dement Neuropsychol. 2023;17. https://doi.org/10.1590/1980-5764-DN-2022-0092.
Monteiro AMF, Santos RL, Kimura N, Baptista MAT, Dourado MCN. Coping strategies among caregivers of people with Alzheimer disease: a systematic review. Trends Psychiatry Psychother. 2020;40(3):258-68. https://doi.org/10.1590/2237-6089-2017-0065.
Kazemi A, Azimian J, Mafi M, Allen KA, Motalebi SA. Caregiver burden and coping strategies in caregivers of older patients with stroke. BMC Psychol. 2021;9(51). https://doi.org/10.1186/s40359-021-00556-z.
Ibrahim AM, Ibrahim MM, Zaghamir DEF. Burden of care and quality of life among informal caregivers to Alzheimer patients in Egypt. Palliat Support Care. 2023;29:1-8. https://doi.org/10.1017/S1478951523000573.
Pudelewicz A, Talarska D, Baczyk G. Burden of caregivers of patients with Alzheimer’s disease. Scand J Caring Sci. 2019;33(2). https://doi.org/10.1111/scs.12626.
Taveira JHA, Spinelli Junior VF. Quality of life of caregivers of people with Alzheimer´s disease. Braz J Dev. 2021;7(1):7746-62. https://doi.org/10.34117/bjdv7n1-526.
Nunes DP, Brito TRP, Corona LP, Alexandre TS, Duarte YAO. Elderly and caregiver demand: proposal for a care need classification. Rev Bras Enferm. 2018;71(2). https://doi.org/10.1590/0034-7167-2017-0123.
Rodríguez, B.C; Castiñeira, B.R; Nunes, L.C. Enfermedad de Alzheimer y calidad de vida del cuidador informal. REGG. 2019;54(2):81-7. https://doi.org/10.1016/j.regg.2018.10.008.
Leng M, Zhao Y, Xiao H, Li C, Wang Z. Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis. JMIR. 2020;22(9). https://doi.org/10.2196/19468.
Soares AC, Rêgo AS, Rodrigues TFCS, Cardoso LCB, Rossaneis MA, Carreira L. et al. Construção e validação de tecnologia educacional de autocuidado para cuidadores informais. Rev Bras Enferm. 2021;74(4). https://doi.org/10.1590/0034-7167-2020-0215.
Garcia-Ptacek S, Dahlrup B, Edlund AK, Wijk H, Eriksdotter M. The caregiving phenomenon and caregiver participation in dementia. Scand. J Caring Sci. 2019;33(2):255-65. https://doi.org/10.1111/scs.12627.
Mattos EB, Kovács MJ. Doença de Alzheimer: a experiência única de cuidadores familiares. Psicol USP. 2020;31. https://doi.org/10.1590/0103-6564e180023.
Polenick CA, Min L, Kales HC. Medical Comorbidities of Dementia: Links to Caregivers' Emotional Difficulties and Gains. JAGS. 2020;68(3):609-13. https://doi.org/10.1111/jgs.16244.
Dickson VV, Melnyk H, Ferris R, Leon A, Arcila-Mesa M, Rapozo C. et al. Perceptions of Treatment Burden Among Caregivers of Elders With Diabetes and Co-morbid Alzheimer's Disease and Related Dementias: A Qualitative Study. CRN. 2023;32(4):752-8. https://doi.org/10.1177/10547738211067880.
Araujo APS, Moreira RAPS, Slabcoushi RL. Correlação Entre o Impacto de Cuidar e Capacidade Funcional de Pacientes com Doença de Alzheimer. Rev Saúde Pesq. 2010;4(2):177-84.
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