Elderly people with dementia: factors related to informal caregivers’ quality of life and burden
DOI:
https://doi.org/10.33448/rsd-v12i11.43770Keywords:
Aged; Caregivers; Quality of life; Dementia.Abstract
Objective: To associate variables related to caregivers’ activity with their QoL and burden and to correlate QoL with burden particularly regarding informal caregivers of elderly people with dementia. Materials: data collected from online and cross-sectional survey with 112 family (i.e. informal) caregivers of elderly people with dementia, from November 2021 to July 2022 through: (i) sociodemographic-clinical questionnaire, (ii) Informal Caregiver Burden Assessment Questionnaire, and (iii) Quality of Life Questionnaire - Control, Autonomy, Self-realization and Pleasure (CASP-19). Method: Descriptive analysis, Spearman correlation and Bonferroni post-hoc were performed. Results: For QoL, a negative correlation of moderate level was noted for burden (ρspearman = – 0.656; p < 0.01). Caregivers who performed paid work (36.3 ± 3.03) and who felt valued (38.8 ± 3.12) had a higher QoL score. Those who did not perform paid work (90.3 ± 5.82) and who did not feel valued (77.3 ± 5.39) showed greater burden. Conclusion: The higher the burden score, the lower the QoL score. Performing paid work and feeling valued correlated to higher QoL score while not engaging in paid work and not feeling valued were associated with greater burden.
References
Alves L. C. S., Monteiro D. Q., Bento S. R., Hayashi V. D., Pelegrini L. N. C. & Vale F. A. C. Burnout syndrome in informal caregivers of older adults with dementia: A systematic review. Dement Neuropsychol; 13(4):415-421.
Beach B, Bélanger H. L., Harding S., Rodrigues P. M., Garcia L., Tripathi I., Gillis M. & Dow B. (2022). Caring for the caregiver: Why policy must shift from addressing needs to enabling caregivers to flourish. Front Public Health; 10:997981.
Candido R. S., Costa A. B., Silva F. R. T., Melo S. C. C. S., Gervásio V. L. & Carreira L (2020). Sobrecarga do cuidador informal de idosos com alzheimer em um município do Paraná. Braz J Hea Rev; 3(1):444-62. https://ojs.brazilianjournals.com.br/ojs/index.php/BJHR/article/view/6338.
Carvalho E. B. & Neri A. L. (2019). Patterns of use of time by family caregivers of elderly persons with dementia. Revista Brasileira de Geriatria e Gerontologia. https://www.scielo.br/j/rbgg/a/84yPBV5Jy9zSTvWwcHkpzWC/abstract/?lang=pt&format=html.
Connors M. H., Seeher K., Teixeira-Pinto A., Woodward M., Ames D. & Brodaty H. (2020). Dementia and caregiver burden: A three-year longitudinal study. Int J Geriatr Psychiatry, 35(2):250-258. https://pubmed.ncbi.nlm.nih.gov/31821606/.
Dementia Forecasting Collaborators (2019). 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(2) https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(21)00249-8/fulltext.
Flesch L. D., Batistoni S. S. T., Neri A. L., & Cachioni M. (2019). Factors associated with the quality of life of elderly caregivers of other elderly persons. Revista Brasileira de Geriatria e Gerontologia. http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1809-98232019000300201.
Garre-Olmo Josep (2019). Epidemiologia de la enfermedad de Alzheimer y otras demencias. Rev Neurol, 66(11):377-386.
Hyde, M., Wiggins R. D., Higgs P. & Blane D. B. (2003). A measure of quality of life in early old age: the theory, development and properties of a needs satisfaction model (CASP-19). Aging & Mental Health, 7(3), 186-194. Recuperado em: https://pubmed.ncbi.nlm.nih.gov/12775399/.
Instituto Brasileiro de Geografia e Estatística (2022). Pesquisa Nacional por Amostra de Domicílios. https://agenciadenoticias.ibge.gov.br/agencia-noticias/2012-agencia-de-noticias/noticias/27878-com-envelhecimento-cresce-numero-de-familiares-que-cuidam-de-idosos-no-pais.
Krutter S. et al. (2020). Comparing perspectives of family caregivers and healthcare professionals regarding caregiver burden in dementia care: results of a mixed methods study in a rural setting. Age Ageing; 49(2):199-207.
Langa K. M. (2018). Cognitive Aging, Dementia, and the Future of an Aging Population. In: National Academies of Sciences, Engineering, and Medicine; National Academies Press. https://www.ncbi.nlm.nih.gov/books/NBK513075/.
Langner L. A. & Furstenberg F. F. (2020). Diferenças de gênero nos cuidados e tarefas domésticas dos cuidadores do cônjuge: fato ou ficção? J Gerontol B Psychol Sci Soc Sci; 75(1):173-183.
Martínez P. S. (2020) Síndrome del cuidador queimado. Rev Clin Med Fam. http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1699-695X2020000100013&lng=es
Monteiro E. A., Mazin S. C. & Dantas R. A. S (2015). Questionário de Avaliação da Sobrecarga do Cuidador Informal: validação para o Brasil. Rev Bras Enferm.; 68(3):421- 428). https://www.scielo.br/j/reben/a/HXCY9Rx7zRkY69zTLK4yxfP/?lang=pt.
Peres P. A. T., Buchalla C. M. & Silva S. M. (2018). Aspectos da sobrecarga e qualidade de vida de cuidadores de pacientes hospitalizados: uma análise baseada na Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF). Rev Bras Saude Ocup, 43: e12.
Perpiña G. J., Orts B. N., Fernández A. M., García S. S., García M. P. & Cabañero M. J. (2019) Level of Burden and Health-Related Quality of Life in Caregivers of Palliative Care Patients. Int J Environ Res Public Health. Nov 29;16(23):4806.
Queiroz J. P. C., Machado A. L. G. & Vieira, N. F. C. (2020). Health Literacy for old careers with Alzheimer’s disease. Rev Bras Enferm;73(Suppl 3):e20190608.
Santos F. G. T., Harmuch C., Paiano M., Radovanovic C. A. T., Rêgo A. S. & Carreira L. (2022). Competência de idosos cuidadores informais de pessoas em assistência domiciliar. Esc Anna Nery; 26:e20210288.
Shubash S. G., Rajini S., Noor A. A., Rasidah J., Mohamad A. R., Maw P. T., Sherina M. S., Suhaila M. Z., Sharmini S. K. & Nurashikin I. (2020). Prevalence of dementia and quality of life of caregivers of people living with dementia in Malaysia. Geriatr. Gerontol. https://onlinelibrary.wiley.com/doi/abs/10.1111/ggi.14031.
Sousa G. S., Silva R. M., Reinaldo A. M. S., Soares S. M., Gutierrez D. M. D. & Figueiredo M. L. F. (2021) A gente não é de ferro”: Vivências de cuidadores familiares sobre o cuidado com idosos dependentes no Brasil. Ciênc Saúde Colet; 26(1):27-36.
Souza E. C., Silva T. C., Silva M. L., Nascimento I. M. G., Alencar M. T. & Feitosa A. (2020) Dificuldades encontradas pelos cuidadores de idosos com Alzheimer. Brazilian Journal of Production Engineering, https://periodicos.ufes.br/bjpe/issue/view/1166.
Souza, N. M. P, Pereira, D. S, Alves, M. S. I., Carvalho, R. M. Q., & Horta, N. C. (2020). Aspetos socioeconômicos, sobrecarga e qualidade de vida do cuidadores de idosos com doença de Alzheimer. Revista Interdisciplinar da PUC Minas no Barreiro; 10(19). http://periodicos.pucminas.br/index.php/percursoacademico/article/view/21961/16535.
Strengthening the reporting of observational studies in epidemiology (2021) Recuperado em: https://www.strobe-statement.org/.
United Nations (2019). Highlights. New York City (NY): United Nations, Department of Economic and Social Affairs. https://www.un.org/en/development/desa/population/publications/pdf/ageing/WorldPopulat ionAgeing2019-Highlights.pdf.
World Health Organization (2023). Quality of Life instrument (WHOQOL-100). https://www.who.int/tools/whoqol/whoqol-bref.
Zmora R., Statz T. L., Birkeland R. W., McCarron H. R., Finlay J. M., Rosebush C. E. & Gaugler J. E. (2021). Transitioning to Long-Term Care: Family Caregiver Experiences of Dementia, Communities, and Counseling. J Aging Health; 33(1-2):133-146.
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Copyright (c) 2023 Amanda Curiel Trentin Corral; Naila Albertina de Oliveira; Mônica Taminato; Paula Hino; Meiry Fernanda Pinto Okuno
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