Health literacy of informal caregivers on alzheimer's disease

Authors

DOI:

https://doi.org/10.29352/mill0217.24987

Keywords:

Alzheimer´s disease, informal caregiver, dementia, health literacy

Abstract

Introduction: Considering population aging and the demographic projections for Portugal, is expected an increase in the development of chronic degenerative diseases, as is the case of Alzheimer's Disease (AD). Thus, Informal Caregivers (IC) have a fundamental role in the provision of care, which is influenced by the literacy level of such population.

Objective: To explore the level of literacy of Informal Caregivers on Alzheimer's Disease.

Methods: Descriptive, exploratory and quantitative study, with a sample of 28 participants. The data collection took place through a questionnaire and the Alzheimer's Disease Knowledge Scale, on Google Forms, after informed consent.

Results: Most IC were female (75%), with an average of 54,04 years of age (12,46), a high level of educational qualifications and a close relationship with the person cared for. They provide care on average 4,18 years (±2,41), approximately 12 hours a day, seven days a week.  Regarding the difficulties felt, the majority reported neurobehavioral changes in AD, management of personal and professional life, lack of support and uncertainties of personal training to care. It is considered that 57,14% of IC have an intermediate level (3 on a scale of 1-5) in the way they provide care.

Conclusion: Due to the difficulties and needs mentioned by IC, the creation of new health literacy programs in the community is essential. In future studies it is important to evaluate the effectiveness of these programs in order to promote care strategies for IC of people with AD.

Downloads

Download data is not yet available.

References

Almeida, C. V. de, Silva, C. R. da, Rosado, D., Miranda, D., Oliveira, D., Mata, F., … Assunção, V. (2019). Manual de Boas Práticas Literacia em Saúde: Capacitação dos Profissionais de Saúde. Ministério da Saúde. Direção-Geral da Saúde. https://doi.org/10.13140/RG.2.2.17763.30243

Arriaga, M. T. de, Santos, B. dos, Silva, A., Mata, F., Chaves, N., & Freitas, G. (2019). Plano de ação para a literacia em saúde, Portugal 2019-2021. Lisboa.

Bauab, J. P., & Emmel, M. L. G. (2014). Mudanças no cotidiano de cuidadores de idosos em processo demencial. Revista Brasileira de Geriatria e Gerontologia, 17(2), 339–352. https://doi.org/10.1590/S1809-98232014000200011

Carpenter, B. D., Balsis, S., Otilingam, P. G., Hanson, P. K., & Gatz, M. (2009). The Alzheimer’s Disease Knowledge Scale: Development and Psychometric Properties. The Gerontologist, 49(2), 236–247. https://doi.org/10.1093/GERONT/GNP023

Costa, M. B. A. L. da, Paúl, M. C. L. de F., Azevedo, M. J. T. da C., & Gomes, J. C. R. (2019). Motivações dos cuidadores informais de pessoas com demência e o paradoxo do cuidado. Revista Eletrônica Acervo Saúde, 11(18). https://doi.org/10.25248/reas.e2620.2019

Despacho n.o 5988/2018 de 19 de Junho. Diário da República nº 176/98 – II Série. Lisboa: Gabinete do Secretário de Estado Adjunto e da Saúde.

Espanha, R., Ávila, P., & Mendes, R. V. (2016). Literacia em saúde em Portugal- relatório síntese. Fundação Calouste Gulbenkian. Lisboa. Retrieved from: https://gulbenkian.pt/

Eurocarers. (2020). About carers. Retrieved from: https://eurocarers.org/about-carers/?fbclid=IwAR3Lu5MvawpSA8tJ5ztbkEWzMvW7fbw4i7s8CaAVNGjZMaHOuIu0x_h2NY4

Griffiths, A., Mustasaari, S., & Mäki-Petajä-Leinonen, A. (2017). Subjectivity, Citizenship and Belonging in Law: Identities and Intersections - Google Livros (Vol. 1). New York: Routledge.

INE. (2017). Estatísticas da população residente, Portugal 2016. Lisboa, Portugal: Instituto Nacional de Estatística.

Jiang, Y., Sereika, S. M., Lingler, J. H., Tamres, L. K., & Erlen, J. A. (2018). Health literacy and its correlates in informal caregivers of adults with memory loss. Geriatric Nursing, 39(3), 285–291. https://doi.org/10.1016/j.gerinurse.2017.10.008

Konerding, U., Bowen, T., Forte, P., Karampli, E., Malmström, T., Pavi, E., … Graessel, E. (2019). Do Caregiver Characteristics Affect Caregiver Burden Differently in Different Countries? American Journal of Alzheimer’s Disease and Other Dementias, 34(3), 148–152. https://doi.org/10.1177/1533317518822047

Lane, C. A., Hardy, J., & Schott, J. M. (2018). Alzheimer’s disease. European Journal of Neurology, 25(1), 59–70. https://doi.org/10.1111/ene.13439

Lei nº100/2019 de 6 de setembro de 2019. Diário da República nº 171/2019, Série I. Lisboa: Assembleia da República.

Lin, C. Y., Shih, P. Y., & Ku, L. J. E. (2019). Activities of daily living function and neuropsychiatric symptoms of people with dementia and caregiver burden: The mediating role of caregiving hours. Archives of Gerontology and Geriatrics, 81, 25–30. https://doi.org/10.1016/j.archger.2018.11.009

Prince, M., Wimo, A., Guerchet, M., Ali, G.-C., Wu, Y.-T., & Prina, M. (2015). World Alzheimer Report 2015: The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer's Disease International. Londres.

Quaresma, M. de L. (2008). Questões do envelhecimento nas sociedades contemporâneas. Revista Kairós : Gerontologia, 11(2), 21–47. https://doi.org/10.23925/2176-901X.2008V11I2P%P

Quinn, C., Nelis, S. M., Martyr, A., Victor, C., Morris, R. G., & Clare, L. (2019). Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction With Life: Findings From the IDEAL Study. American Journal of Geriatric Psychiatry, 27(8), 838–848. https://doi.org/10.1016/j.jagp.2019.02.005

Rodrigues, V. (2018). Literacia em saúde. Revista Portuguesa de Cardiologia, 37(8), 679–680. https://doi.org/10.1016/j.repc.2018.07.001

Ruisoto, P., Contador, I., Fernández-Calvo, B., Palenzuela, D., & Ramos, F. (2018). Exploring the association between optimism and quality of life among informal caregivers of persons with dementia. International Psychogeriatrics, 31(3), 309–315. https://doi.org/10.1017/S104161021800090X

Stall, N. M., Kim, S. J., Hardacre, K. A., Shah, P. S., Straus, S. E., Bronskill, S. E., … Rochon, P. A. (2019). Association of Informal Caregiver Distress with Health Outcomes of Community-Dwelling Dementia Care Recipients: A Systematic Review. Journal of the American Geriatrics Society, 67(3), 609–617. https://doi.org/10.1111/jgs.15690

Struckmeyer, L. R., & Pickens, N. D. (2016). Home modifications for people with Alzheimer’s disease: A scoping review. American Journal of Occupational Therapy, 70(1). https://doi.org/10.5014/ajot.2015.016089

Teixeira, A. R., Alves, B., Augusto, B., Fonseca, C., Abreu, J., Almeida, M. J., … & Nascimento, R. (2017). Medidas de intervenção junto dos cuidadores informais. Gabinete de Estratégia e Planeamento do MTSSS. Lisboa.

Veronese, N., Solmi, M., Basso, C., Smith, L., & Soysal, P. (2019). Role of physical activity in ameliorating neuropsychiatric symptoms in Alzheimer disease: A narrative review. International Journal of Geriatric Psychiatry, 34(9), 1316–1325. https://doi.org/10.1002/gps.4962

World Health Organization. (1998). Health Promotion Glossary. Oxford University Press, 13(4), 357. https://doi.org/10.1093/heapro/13.4.349

World Health Organization. (2013). Health literacy: The solid facts.

Published

2021-12-29

How to Cite

Sarmento, B., Caetano, L., Serra, M. J., & Costa, M. (2021). Health literacy of informal caregivers on alzheimer’s disease. Millenium - Journal of Education, Technologies, and Health, 2(17), 53–60. https://doi.org/10.29352/mill0217.24987

Issue

Section

Life and Healthcare Sciences