Resumen
Marco contextual: las personas con Demencia experimentan un número creciente de procedimientos de cuidado, lo que puede llevar a la sobrecarga del Cuidador Familiar. El seguimiento de estos cuidadores es crucial para la detección temprana de cambios. Objetivos: evaluar la sobrecarga de los Cuidadores Familiares de Personas con Demencia inscritas en una Unidad de Salud de la Familia en Portugal e identificar las intervenciones que los enfermeros familiares adoptan en el manejo de esta sobrecarga. Metodología: estudio cuantitativo, transversal y descriptivo, realizado con 45 Cuidadores Familiares, mediante el llenado de un formulario por entrevista telefónica, incluyendo la Evaluación del Impacto Físico, Emocional y Social del Rol del Cuidador Informal (QASCI). Resultados: la mayoría de los cuidadores familiares estudiados son del sexo femenino, mayores de 65 años, con bajo nivel educativo y con tiempo de cuidado superior a 5 años. Los dominios con mayor impacto son carga financiera, implicaciones para la vida personal y carga emocional. La frecuencia de apoyo de la enfermera de familia fue escasa y el tipo de apoyo más mencionado fue la orientación telefónica y las actividades instrumentales. Conclusiones: el cuidado familiar de la Persona con Demencia, durante la pandemia de la COVID-19, generó sobrecarga física, emocional y social de estos cuidadores.
Citas
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. (2020). 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
Alzheimer’s Disease International. (2018). World Alzheimer Report 2018 - The state of the art of dementia research: New Frontiers. from: https://www.alzint.org/resource/world-alzheimer-report-2018/
Broekema, S., Paans, W., Roodbol, P. F., & Luttik, M. L. A. (2021). Effects of family nursing conversations on families in home health care: A controlled before-and-after study. Journal of advanced nursing, 77(1), 231–243. https://doi.org/10.1111/jan.14599
Cheng S. T. (2017). Dementia Caregiver Burden: a Research Update and Critical Analysis. Current psychiatry reports, 19(9), 64. https://doi.org/10.1007/s11920-017-0818-2
Cheng, S. T., & Zhang, F. (2020). A comprehensive meta-review of systematic reviews and meta-analyses on nonpharmacological interventions for informal dementia caregivers. BMC geriatrics, 20(1), 137. https://doi.org/10.1186/s12877-020-01547-2
Curnow, E., Rush, R., Maciver, D., Górska, S., & Forsyth, K. (2021). Exploring the needs of people with dementia living at home reported by people with dementia and informal caregivers: a systematic review and Meta-analysis. Aging & mental health, 25(3), 397–407. https://doi.org/10.1080/13607863.2019.1695741
Ducharme, F. C., Lévesque, L. L., Lachance, L. M., Kergoat, M. J., Legault, A. J., Beaudet, L. M., & Zarit, S. H. (2011). "Learning to become a family caregiver" efficacy of an intervention program for caregivers following diagnosis of dementia in a relative. The Gerontologist, 51(4), 484–494. https://doi.org/10.1093/geront/gnr014
Ferreira, I. (2013). A sobrecarga do cuidador informal de pessoas com dependência [Unpublished master's thesis]. Escola Superior de Saúde do Instituto Politécnico de Setúbal.
Frias, C. E., Garcia-Pascual, M., Montoro, M., Ribas, N., Risco, E., & Zabalegui, A. (2020). Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review. Journal of advanced nursing, 76(3), 787–802. https://doi.org/10.1111/jan.14286
Kerpershoek, L., de Vugt, M., Wolfs, C., Woods, B., Jelley, H., Orrell, M., Stephan, A., Bieber, A., Meyer, G., Selbaek, G., Handels, R., Wimo, A., Hopper, L., Irving, K., Marques, M., Gonçalves-Pereira, M., Portolani, E., Zanetti, O., Verhey, F., & Actifcare Consortium (2018). Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice. Aging & mental health, 22(7), 897–902. https://doi.org/10.1080/13607863.2017.1390732
Leocadie, M. C., Morvillers, J. M., Pautex, S., & Rothan-Tondeur, M. (2020). Characteristics of the skills of caregivers of people with dementia: observational study. BMC family practice, 21(1), 149. https://doi.org/10.1186/s12875-020-01218-6
Liu, Z., Heffernan, C., & Tan, J. (2020). Caregiver burden: A concept analysis. International journal of nursing sciences, 7(4), 438–445. https://doi.org/10.1016/j.ijnss.2020.07.012
Martins, T., Ribeiro, J., & Garrett, C. (2013). Estudo de validação do questionário de avaliação da sobrecarga para cuidadores informais. Psicol Saúde e Doenças, 4(1), 131–48.
Movimento cuidar dos cuidadores informais. (2018). O que é ser Cuidador Informal em Portugal. https://movimentocuidadoresinformais.pt/wp-content/uploads/2021/04/cuidadores-informais_infografia_2021_A4.pdf
Palumbo, M., & Rambur, B. 2020). Two Different Primary Care Approaches for Caring for People With Dementia and Their Families. J Nurse Pract., 16(10), 756–761. DOI:10.1016/j.nurpra.2020.08.003
Parra, M., Torres, C. C., Arboleda, L. B., Rivera Carvajal, R., Franco, S., & Santos, J. (2019). Effectiveness of an Educational Nursing Intervention on Caring Ability and Burden in Family Caregivers of Patients with Chronic Non-Communicable Diseases. A Preventive Randomized Controlled Clinical Trial. Investigacion y educacion en enfermeria, 37(1), e04. https://doi.org/10.17533/udea.iee.v37n1e04
Rodrigues, C. M. da N. C. ., Amaral, A. F. S. ., & Tavares, J. P. de A. (2023). A pessoa dependente, o cuidador familiar e os recursos utilizados: Estudo com famílias clássicas. Revista de Enfermagem Referência, 6(2), 1–7. https://doi.org/10.12707/RVI22071
Santos, J., Rodrigues, C., Zogheib, J., Malachias, M., & Rezende, B. (2017). Assessment of hemodynamic and vascular parameters in Alzheimer’s disease, vascular dementia and mild cognitive abnormalities: a pilot study. Rev Bras Geriatr e Gerontol., 20(5), 670–678. DOI:10.1590/1981-22562017020.160211
Sequeira, C. (2018). Cuidar de Idoos com Dependência Física e Mental (2ª ed.). Lidel.
Sołtys, A., & Tyburski, E. (2020). Predictors of mental health problems in formal and informal caregivers of patients with Alzheimer's disease. BMC psychiatry, 20(1), 435. https://doi.org/10.1186/s12888-020-02822-7
Unnikrishnan, B., Rathi, P., Saxena, P. U. P., Aggarwal, A., Shekhar, S., Bansal, S., Naidu, B. V., & Menon, S. (2019). Psychosocial Burden Among Informal Caregivers of Adult Cancer Patients Attending a Tertiary Care Cancer Center in Coastal South India. SAGE Open, 9(3). https://doi.org/10.1177/2158244019876287
Van Manen, M. (2017). Phenomenology and meaning attribution. Indo-Pacific Journal of Phenomenology, 17(1), 1–12. https://doi.org/10.1080/20797222.2017.1368253
Wang, M., Shao, S., Li, J., Liu, Y., Xu, X., & Du, J. (2018). The needs of informal caregivers and barriers of primary care workers toward dementia management in primary care: a qualitative study in Beijing. BMC family practice, 19(1), 201. https://doi.org/10.1186/s12875-018-0890-7
World Health Organization. (2018). Towards a dementia plan: a WHO guide. https://www.who.int/publications-detail-redirect/towards-a-dementia-plan-a-who-guide
Wulff, J., Fänge, A. M., Lethin, C., & Chiatti, C. (2020). Self-reported symptoms of depression and anxiety among informal caregivers of persons with dementia: a cross-sectional comparative study between Sweden and Italy. BMC health services research, 20(1), 1114. https://doi.org/10.1186/s12913-020-05964-2
Zubaidi, Z. S., Ariffin, F., Oun, C. T. C., & Katiman, D. (2020). Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study. BMC palliative care, 19(1), 186. https://doi.org/10.1186/s12904-020-00691-1
Zwingmann, I., Michalowsky, B., Esser, A., Kaczynski, A., Monsees, J., Keller, A., Hertel, J., Wucherer, D., Thyrian, J. R., Eichler, T., Kilimann, I., Teipel, S., Dreier Wolfgramm, A., & Hoffmann, W. (2019). Identifying Unmet Needs of Family Dementia Caregivers: Results of the Baseline Assessment of a Cluster-Randomized Controlled Intervention Trial. Journal of Alzheimer's disease : JAD, 67(2), 527–539. https://doi.org/10.3233/JAD-180244
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Derechos de autor 2024 João Lindo Simões, Alcione Cristina Silva Perucci, João Paulo Tavares