Beliefs and views of caregivers of older women living with dementia about end of life, feeding and dysphagia
DOI:
https://doi.org/10.33448/rsd-v11i17.39165Keywords:
Caregivers; Dementia; Deglutition disorders; Palliative care; Aged.Abstract
In Brazil, end-of-life’ decisions of elderly people with dementia are commonly made by their caregivers, because they usually do not have advance directives. One of the most difficult and conflicted decision is on feeding options (oral versus gastrostomy), maybe due the caregiver’s beliefs and views, that are, however, rarely studied. This qualitative study aimed to analyze beliefs and views of five demented elderly people’s caregivers regarding end-of-life, dementia, feeding, swallowing and dysphagia in a public home care service. The researchers interviewed these caregivers; they audio-recorded and transcribed the interviews, and the content analysis was used for data analysis and interpretation. The caregivers associated eating and drinking to survival and caring. Caregivers of elderly women who received oral feeding mentioned feelings of gratitude and well-being; the caregivers of the elderly woman with tube feeding highlighted feelings such as sadness, displeasure and concern on nutritional aspects. All the caregivers identified difficulty in eating and/or swallowing of their cared ones, and they said that dysphagia had negative impact on both lives (cared one and caregivers), associating dysphagia as a marker of the end of life.
References
Adames, H. Y., Chavez-Dueñas, N. Y., Fuentes, M. A., Salas, S. P., & Perez-Chavez, J. G. (2014). Integration of Latino/a cultural values into palliative health care: A culture centered model. Palliative & supportive care, 12(2):149-157. http://dx.doi.org/10.1017/S147895151300028X
Alagiakrishnan, K., Bhanji, R. A., & Kurian, M. (2013). Evaluation and management of oropharyngeal dysphagia in different types of dementia: a systematic review. Archives of gerontology and geriatrics, 56: 1-9.
American Psychiatric Association (APA). (2014). DSM-5 – Manual Diagnóstico e Estatístico de Transtornos Mentais. Artmed.
Bardin, L. (1977). Análise de conteúdo (Volume 70). Edições.
Blank, R. H. (2011). End-of-life decision making across cultures. Journal of law, medicine and ethics, 39(2): 201-214. http://dx.doi.org/10.1111/j.1748-720X.2011.00589.x
Brody, H., Hermer, L. D., Scott, L .D., Grumbles, L. L., Kutac, J. E., & McCammon, S. D . (2011). Artificial nutrition and hydration: the evolution of ethics, evidence, and policy. Journal of general internal medicine, 26(9):1053-1058. http://dx.doi.org/10.1007/s11606-011-1659-z.
Camp, C. J., Cohen-Mansfield, J., & Capezuti, E. A. (2002). Use of nonpharmacologic interventions among nursing home residents with dementia. Psychiatric services, 53(11):1397-1401.
Cavalcante, R. B., Calixto, P., & Pinheiro, M. M. K. (2014). Análise de Conteúdo: considerações gerais, relações com a pergunta de pesquisa, possibilidades e limitações do método. Informação & Sociedade: Estudos, 24(1):13-18. http://www.periodicos.ufpb.br/ojs/index.php/ies/article/view/10000
Cesário, V. A .C., Leal, M. C.C ., Marques, A. P. O., & Claudino, K. A. (2017). Estresse e qualidade de vida do cuidador familiar de idoso portador da doença de Alzheimer. Saúde em debate, 41(112): 171-182. http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0103-11042017000100171&lng=pt. http://dx.doi.org/10.1590/0103-1104201711214
Clarke, G., Fistein, E., Holland, A., Tobin, J., Barclay, S., & Barclay, S. (2018). Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking. BMC neurology (Online), 18(1):115. http://dx.doi.org/10.1186/s12883-018-1112-6
Davies, N., Maio, L., Rait, G, & Iliffe, S. (2014). Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis. Palliative medicine; 28(7):919-930.
Ekberg, O., Hamdy, S., Woisard, V., Wuttge-Hannig, A., & Ortega, P. (2002). Social and psychological burden of dysphagia: its impact on diagnosis and treatment. Dysphagia, 17(2):139-146.
Esquível, S., Sampaio, J. F., & Silva, C. T. D. (2014). Alimentar a vida ou sustentar a morte?: Uma reflexão em equipa partindo de um caso clínico. Revista portuguesa de medicina geral e familiar, 30(1):44-49. http://www.scielo.mec.pt/scielo.php?script=sci_arttext&pid=S2182-51732014000100008&lng=pt
Falcão, D. V. S., & Bucher-Maluschke, J. S. N. F. (2008). Filhas que cuidam de pais/mães com provável/possível Doença de Alzheimer. Estudos de Psicologia (Natal), 13(3): 245-256. http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-294X2008000300007&lng=en&nrm=iso
Fuchs, T. (2020). Embodiment and personal identity in dementia. Med Health Care and Philos 23, 665–676. https://doi.org/10.1007/s11019-020-09973-0
Gil, E., Agmon, M., Hirsch, A., Ziv, M., & Zisberg, A. (2018). Dilemmas for guardians of advanced dementia patients regarding tube feeding. Age and Ageing, 47(1):138-143. https://doi.org/10.1093/ageing/afx161
Hanson, L.C ., Ersek, M., Lin, F, C., & Carey, T .S. (2013). Outcomes of feeding problems in advanced dementia in a nursing home population. Journal of the american geriatrics society, 61(10):1692-1697. https://doi.org/10.1111/jgs.12448
Horner, J., Alberts, M. J., Dawson, D. V., & Cook, G. M. (1994). Swallowing in Alzheimer’s disease. Alzheimer disease and associated disorders, 8: 177-189.
Humbert, I. A., McLaren, D. G, Kosmatka, K., Fitzgerald, M., Johnson, S., Porcaro, E., Kays, S. Umoh, E-O., & Robbins, J. (2010). Early deficits in cortical control of swallowing in Alzheimer’s disease. Journal of Alzheimer's disease, 19: 1185-1197.
Katz, S., & Akpom, C. A. (1976). A measure of primary sociobiological functions. International journal of health services, 6(3):493-508.
Kilstoff, K, & Chenoweth, L. (1998). New approaches to health and well-being for dementia day-care clients, family carers and day-care staff. International journal of nursing practice, 4(2):70-83.
Leslie, P. & Broll, J. (2022). Eating, Drinking, and Swallowing Difficulties: The Impacts on, and of, Religious Beliefs. Geriatrics (Basel). Mar 30;7(2):41. https://doi.org/10.3390/geriatrics7020041
Meyer-Rochow, V. B. (2009). Food taboos: their origins and purposes. Journal of ethnobiology and ethnomedicine, 5:18. https://doi.org/10.1186/1746-4269-5-18
Minayo, M. C. S. (Org.), (2012, 32ª Edição). Pesquisa Social. Teoria, método e criatividade. Vozes.
Minayo, M. C .S. (2008, 11ª Edição). O desafio do conhecimento: pesquisa qualitativa em saúde. Hucitec/Abrasco.
Montaño, M. B. M. M., & Ramos, L. R. (2005). Validade da versão em Português da Clinical Dementia Rating. Revista de Saúde Pública, 39(6):912–917. https://www.scielo.br/j/rsp/a/K3TRXLdkq7T7C3chjHTPV6S/
Muniz, E. A., Freitas, C. A. S. L., Oliveira, E. N., & Lacerda, M. R. (2016). Grau de sobrecarga dos cuidadores de idosos atendidos em domicílio pela Estratégia Saúde da Família. Saúde em debate, 40 (110): 172-182. https://doi.org/10.1590/0103-1104201611013
Oh, A., Erinosho, T., Dunton, G., Perna F. M., & Berrigan, D. (2014). Cross-sectional examination of physical and social contexts of episodes of eating and drinking in a national sample of US adults. Public health nutrition, 17(12):2721-2729. https://doi.org/10.1017/S1368980013003315
Ohr, S., Jeong, S., & Saul, P. (2017). Cultural and religious beliefs and values, and their impact on preferences for end-of-life care among four ethnic groups of community-dwelling older persons. Journal of clinical nursing, 26 (11-12):1681-1689. https://doi.org/10.1111/jocn.13572
Palecek, E. J., Teno, J. M., Casarett, D. J., Hanson, L. C., Rhodes, R. L., & Mitchell, S .L. (2010). Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. Journal of the american geriatrics society, 58(3):580-584. https://doi.org/10.1111/j.1532-5415.2010.02740.x
Piers, R., Albers, G., Gilissen, J., De Lepeleire, J., Steyaert, J., Van Mechelen, W., Steeman, E., Dillen, L., Vanden Berghe, P., & Van den Block, L. (2018). Advance care planning in dementia: recommendations for healthcare professionals. BMC palliative care, 21;17(1):88. https://doi.org/10.1186/s12904-018-0332-2
Priefer, B. A., & Robbins, J. (1997). Eating changes in mild-stage Alzheimer’s disease: a pilot study. Dysphagia, 12: 212-221.
Romain, M., & Sprung, C. L. (2014). End-of-Life Practices in the Intensive Care Unit: The Importance of Geography, Religion, Religious Affiliation, and Culture. Rambam Maimonides Medical Journal, 5(1):e0003. https://doi.org/10.5041/RMMJ.10137
Sampson, E. L., Candy, B., & Jones, L. (2009). Enteral tube feeding for older people with advanced dementia. The Cochrane database of systematic reviews, 2009(2):CD007209. https://doi.org/10.1002/14651858
Santos, B. P., Andrade, M. J. C., Silva, R. O., & Menezes, E. C. (2018). Disfagia no idoso em instituições de longa permanência - revisão sistemática da literatura. Revista CEFAC, 20 (1): 123-130. http://dx.doi.org/10.1590/1982-021620182013817
Santos, A. G .H. dos, Santos, S. A. dos, & Lima, U. T.S . de. (2022) Feelings, representations and social imaginary of the family caregiver in Alzheimer’s disease: Scientific evidence from 2016-2022. Research, Society and Development, 11(16), e287111638340. https://doi.org/10.33448/rsd-v11i16.38340
Santos, R. L., Sousa, M. F. D., Ganem, A. C., Silva, T. V., & Dourado, M. C. (2013). Cultural aspects in dementia: differences in the awareness of Brazilian caregivers. Trends psychiatry psychother. [Internet]. 35(3):191-197. https://doi.org/10.1590/S2237-60892013000300006
Snyder, E. A., Caprio, A. J., Wessell, K., Lin, F. C., & Hanson, L. C. (2013). Impact of a decision aid on surrogate decision-makers’ perceptions of feeding options for patients with dementia. J Am Med Dir Assoc;14(2):114-8. https://doi.org/10.1016/j.jamda.2012.10.011
van der Steen, J. T., Onwuteaka-Philipsen, B. D., Knol, D. L., Ribbe, M. W., & Deliens, L. (2013). Caregivers' understanding of dementia predicts patients' comfort at death: a prospective observational study. BMC Med. 11:105. https://doi.org/10.1186/1741-7015-11-105
Vanderwegen, J., & Van Vlasselaer, K. (2013). Clinical swallowing evaluation of dementia of the alzheimer type (DAT) in different stages of disease severity. Dysphagia, 28: 311.
Winblad, B., Amouyel, P., Andrieu, S., Ballard, C., Brayne, C., Brodaty, H., Cedazo-Minguez, A., Dubois, B., Edvardsson, D., Feldman, H., Fratiglioni, L., Frisoni, G.B., Gauthier, S., Georges, J., Graff, C., Iqbal, K., Jessen, F., Johansson, G., Jönsson, L., Kivipelto, M., Knapp, M., Mangialasche, F., Melis, R., Nordberg, A., Rikkert, M.O., Qiu, C., Sakmar, T.P., Scheltens, P., Schneider, L.S., Sperling, R., Tjernberg, L.O., Waldemar, G., Wimo, A., & Zetterberg, H. (2016). Defeating Alzheimer's disease and other dementias: a priority for European science and society. Lancet Neurol. Apr;15(5):455-532. https://doi.org/10.1016/S1474-4422(16)00062-4
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2022 Francelise Pivetta Roque; Priscila Starosky; Rayssa Nogueira Ouverney; Edison Iglesias de Oliveira Vidal
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
1) Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2) Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3) Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work.