Experience of People in Mild and Moderate Stages of Alzheimer’s Disease in Spain
DOI:
https://doi.org/10.5294/aqui.2020.20.4.4Keywords:
Dementia, alzheimer disease, qualitative research, life experience, interviews.Abstract
Experiencia de personas con Alzheimer en fases leves y moderadas en España
A experiência de pessoas com Alzheimer na Espanha nas fases leve e moderada
Objective: To analyze the meaning of dementia by those affected by it, and to give them a voice.
Material and methods: Descriptive phenomenology through interviews with people of both genders who are over 50 years old and living in Tarragona (Spain), with a diagnosis of mild or moderate dementia, mainly related to Alzheimer’s disease.
Results: Three main themes emerged: 1) normalization of memory loss in early stages as part of the natural aging process; 2) self-awareness of progressive memory decline, which is concealed from others, and 3) adaptation processes and strategies to coexist with their condition after diagnosis.
Conclusions: The most evident features were the lack of specialized infrastructures within the health system in terms of care, prevention programs, and early detection.
Para citar este artículo / To reference this article / Para citar este artigo
Riquelme-Galindo JR, García-Sanjuán S, Lillo-Crespo M, Martorell-Poveda MA.
Experience of People in Mild and Moderate Stages of Alzheimer's Disease in Spain Aquichan. 2020;20(4):e2044. DOI: https://doi.org/10.5294/aqui.2020.20.4.4
Recibido: 05/04/2020
Aceptado: 24/08/2020
Publicado: 04/12/2020
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References
Organización Mundial de la Salud. Demencia. Notas Descriptivas [Internet]. 2019 sept. 19. Disponible en: http://www.who.int/es/news-room/fact-sheets/detail/dementia
Alzheimer’s Association. 2018 Alzheimer’s disease facts and figures. Alzheimer’s Dement [Internet]. 2018;14(3):367-429. Disponible en: https://www.alz.org/media/homeoffice/facts%20and%20figures/facts-and-figures.pdf
Prince M, Wimo A, Guerchet M, Ali G, Wu Y, Prina M. The global impact of dementia: an analysis of prevalence, incidence, cost and trends. World Alzheimer Report 2015 [Internet] London : Alzheimer’s Disease International (ADI); 2015 oct. Disponible en: https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf
Baldwin C, Bradford Dementia Group. Narrative, citizenship and dementia: The personal and the political. J Aging Stud. 2008; 22(3):222-228. DOI: https://doi.org/10.1016/j.jaging.2007.04.002
World Health Organization. World report on ageing and health [Internet]. Switzerland; 2015. Disponible en: https://apps.who.int/iris/bitstream/handle/10665/186463/9789240694811_eng.pdf;jsessionid=5BD52DA27A105549AE4A3D8D326BCF32?sequence=1
Keady J, Nolan, M, Gilliard J. Listen to the voices of experience. J Dementia Care [Internet]. 1995;3(3):15-17. Disponible en: https://research-information.bris.ac.uk/en/publications/listen-to-the-voices-of-experience
Flicker, L. Dementia reconsidered: the person comes first. BMJ (Clinical Research ed.). 1999 Mar;318(7187):880A. DOI: https://doi.org/10.1136/bmj.318.7187.880a
Burgener SC, Dickerson-Putman J. Assessing patients in the early stages of irreversible dementia. J Gerontol Nurs. 1999;25(2):33-41. DOI: https://doi.org/10.3928/0098-9134-19990201-07
Bahro M, Silber E, Sunderland T. How do patients with Alzheimer’s disease cope with their illness? a clinical experience report. J Am Geriatr Soc. 1995;43(1):41-46. DOI: https://doi.org/10.1111/j.1532-5415.1995.tb06240.x
Orona CJ. Temporality and identity loss due to Alzheimer’s disease. Soc Sci Med. 1990;30(11):1247-1256. DOI: https://doi.org/10.1016/0277-9536(90)90265-T
Sabat SR, Harré R. The construction and deconstruction of self in Alzheimer’s disease. Ageing soc 1992;12(4):443-461. DOI: https://doi.org/10.1017/S0144686X00005262
Buckwalter KC, Gerdner LA, Hall GR, Stolley JM, Kudart P, Ridgeway S. Shining through: The humor and individuality of persons with Alzheimer’s disease. J Gerontol Nurs. 1995;21(3):11-16.DOI: https://doi.org/10.3928/0098-9134-19950301-04
Burgener SC, Shimer R, MurelI L. Expressions of individuality in cognitively impaired elders need for individual assessment and care. J Gerontol Nurs. 1993;19(4):13-22. DOI: https://doi.org/10.3928/0098-9134-19930401-05
Cotrell V, Schulz R. The perspective of the patient with Alzheimer’s disease: a neglected dimension of dementia research. Gerontologist. 1993;33(2):205-211. DOI: https://doi.org/10.1093/geront/33.2.205
Nowell ZC, Thornton A, Simpson J. The subjective experience of personhood in dementia care settings. Dementia. 2013;12(4):394-409. DOI: https://doi.org/10.1177/1471301211430648
Cowdell F. Preserving personhood in dementia research: a literature review. Int J Older People Nurs. 2006;1(2):85-94. DOI: https://doi.org/10.1111/j.1748-3743.2006.00016.x
Dröes RM. Insight in coping with dementia: listening to the voice of those who suffer from it. Aging Ment Health. 2007;11(2):115-118. DOI: https://doi.org/10.1080/13607860601154658
Lillo-Crespo M, Riquelme J, Macrae R, De Abreu W, Hanson E, Holmerova I, et al. Experiences of advanced dementia care in seven European countries: implications for educating the workforce. Glob. Health Action. 2018;11(1). DOI: https://doi.org/10.1080/16549716.2018.1478686
Sadana R, Soucat A, Beard J. Boletín de la Organización Mundial de la Salud. Disponible en: http://www.who.int/bulletin/volumes/96/1/17-204214/es/
Niu H, Álvarez-Álvarez I, Guillén-Grima F, Aguinaga-Ontoso I. Prevalencia e incidencia de la enfermedad de Alzheimer en Europa: metaanálisis. Neurología. 2017;32(8):523-532. DOI: https://doi.org/10.1016/j.nrl.2016.02.016
Paley J. Husserl, phenomenology and nursing. J Adv Nurs 1997;26(1):187-193. DOI: https://doi.org/10.1046/j.1365-2648.1997.1997026187.x
Husserl E. The crisis of European sciences and transcendental phenomenology: An introduction to phenomenological philosophy. Northwestern University Press. 1970. Disponible en: https://nupress.northwestern.edu/content/crisis-european-sciences-and-transcendental-phenomenology
Escalante E, Páramo M. Aproximación al análisis de datos cualitativos [Internet]. Mendoza: Universidad del Aconcagua; 2011. Disponible en: http://bibliotecadigital.uda.edu.ar/objetos_digitales/177/aproximacion-al-analisis-de-datos-cualitativos-t1-y-2.pdf
Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med 2002;64(3):510-519. DOI: https://doi.org/10.1097/00006842-200205000-00016
León-Salas B, Martínez-Martín P. Revisión de instrumentos de calidad de vida utilizados en personas con demencia: II. Instrumentos específicos. Psicogeriatría. 2010;2(1):15-24. Disponible en: https://www.viguera.com/sepg/pdf/revista/0201/0201_0015_0024.pdf
Folstein MF, Robins LN, Helzer JE. The mini-mental state examination. Arch Gen Psychiatry 1983;40(7):812-812. DOI: https://doi.org/10.1001/archpsyc.1983.01790060110016
Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982; 139(9):1136-1139. DOI: https://doi.org/10.1176/ajp.139.9.1136
Guba E, Lincoln Y. Paradigmas en pugna en la investigación cualitativa. En: Denzin N, Lincoln I, editores. Handbook of Qualitative Research. Londres: Sage; 1994. Cap. 6. p. 105-117. Disponible en: https://issuu.com/rithard/docs/paradigmas_en_pugna_en_la_investigaci_n_cualitativ
Colaizzi PF. Psychological research as the phenomenologist views it. In: Ronald S. Valle, Mark King, editors. Existential-Phenomenological Alternatives for Psychology. Oxford University Press; 1978. p. 6.
Bowen J, Teri L, Kukull W, McCormick W, McCurry SM, Larson EB. Progression to dementia in patients with isolated memory loss. Lancet. 1997;349(9054), 763-765.
Emery Trindade PG, Santos RL, Lacerda IB, Johannessen A, Nascimento Dourado MC. Awareness of disease in Alzheimer’s disease: what do patients realize about their own condition? Aging Ment health. 2018:1-8. DOI: https://doi.org/10.1080/13607863.2018.1488945
Santos TO. Cognitive changes in aging: implications for discourse processing. In: Carozza LS, editor. Communication and aging: Creative approaches to improving the quality of life. Plural Publishing; 2015. p. 26-65.
Clare L, Quinn C, Jones IR, Woods RT. “I Don’t Think Of It As An Illness”: Illness Representations in Mild to Moderate Dementia. J Alzheimer’s Dis. 2016;51(1):139-150. DOI: https://doi.org/10.3233/jad-150794
Harman G, Clare L. Illness representations and lived experience in early-stage dementia. Qual Health Res. 2006;16(4):484-502. DOI: https://doi.org/10.1177/1049732306286851
Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. 1983;5(2):168-195. DOI: https://doi.org/10.1111/1467-9566.ep10491512
Moos R, Scheafer J. The Crisis of Physical Illness, An Overview and Conceptual Approach. In: Moos, Rudolf, editors. Coping with Physical Illness. 2 New Perspectives. US: Springer; 968. p. 3-25.
Gilmour JA, Huntington AD. Finding the balance: living with memory loss. Int J Nurs Pract 2005;11(3):118-124. DOI: https://doi.org/10.1111/j.1440-172X.2005.00511.x
Preston L, Marshall A, Bucks RS. Investigating the ways that older people cope with dementia: A qualitative study. Aging Ment Health. 2007;11(2):131-143. DOI: https://doi.org/10.1080/13607860600844572
Beard RL. In their voices: Identity preservation and experiences of Alzheimer’s disease. J Aging Stud. 2004;18(4):415-428. https://doi.org/10.1016/j.jaging.2004.06.005
Lin Y, Dai Y, Hwang S. The effect of reminiscence on the elderly population: a systematic review. Public health nursing. 2003;20(4):297-306. DOI: https://doi.org/10.1046/j.1525-1446.2003.20407.x
Merchant A, Ford J. Nostalgia and giving to charity: a conceptual framework for discussion and research. Int J Nonprofit Volunt Sect Mark. 2008;13(1):13-30. DOI: https://doi.org/10.1002/nvsm.300
Bates J, Boote J, Beverley C. Psychosocial interventions for people with a milder dementing illness: a systematic review. J Adv Nurs. 2004;45(6):644-658. DOI: https://doi.org/10.1046/j.1365-2648.2003.02959.x
Belling R, McLaren S, Woods L. Specialist nursing interventions for inflammatory bowel disease. Cochrane Database of Systematic Reviews 2009, Issue 4. Art. No.: CD006597. DOI: https://doi.org/10.1002/14651858.CD006597.pub2
Gomersall T, Smith SK, Blewett C, Astell A. ‘It’s definitely not Alzheimer’s’: Perceived benefits and drawbacks of a mild cognitive impairment diagnosis. Br J Health Psychol. 2017;22(4):786-804. DOI: https://doi.org/10.1111/bjhp.12255
Rivera B, Casal B, Currais L. Provisión de cuidados informales y enfermedad de Alzheimer: valoración económica y estudio de la variabilidad del tiempo. Hacienda Pública Española/Revista de Economía Pública [Internet]. 2009;189:107-130. Disponible en: https://sid.usal.es/idocs/F8/ART13158/provision_de_cuidados_informales_y_enfermedad.pdf
Rowe MA, Ahn H, Benito AP, Stone H, Wilson A, Kairalla J. Injuries and unattended home exits in persons with dementia: A 12-month prospective study. Am. J. Alzheimer’s Dis. Other Dement. 2010;25(1):27-31. DOI: https://doi.org/10.1177/1533317508323138
Livingston G, Leavey G, Manela M, Livingston D, Rait G, Sampson E, et al. Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ. 2010 Aug. 18;341:c4184. DOI: https://doi.org/10.1136/bmj.c4184
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