Problems Faced by Caregivers of Alzheimer’s Patients

Authors

  • Ansa Talib Lahore College for Women University
  • Subha Malik Lahore College for Women University
  • Shehla A. Yasin Lahore College for Women University

Keywords:

Alzheimers, caregivers, content analysis, conflicts, crisis, criticism, Deductive

Abstract

Care giving is a difficult task especially when it involves physical or mental retardation, and it leaves marked negative impact on primary caregivers. Alzheimer is one such ailment where the patient is totally dependent on others for each bit of their life, so the care giving of Alzheimer patients become more burdensome. The aim of this research was to examine the burden and difficulties of caregivers dealing with Alzheimer's patient, especially those living at home. Case study method was employed for this research. Eight caregivers were selected purposively, and content analysis was used to examine their perspective regarding burden and challenges. In the assessment of content, the gathered qualitative information was analyzed in a deductive manner. The results of the analysis showed that caregivers face daily challenges in terms of physical and psychological health issues, social support and resources, family conflicts, crisis, and criticism. The outcomes further elaborated that due to different roles and responsibilities as caregivers they face both positivity and negativity in their lives which in most cases leads them to religiosity. The results of this study can add to positive social change by contributing to the development and implementation of programs that may take into account considerable differences in future.

References

Andren, S., & Elmståhl, S. (2008). The relationship between caregiver burden, caregivers’ perceived health and their sense of coherence in caring for elders with dementia. Journal of Clinical Nursing, 17(6), 790-799.

Centres for Disease Control and Prevention (CDC). (2020). Alzheimer’s disease and healthy ageing. Retrieved from https://www.cdc.gov/aging/ aginginfo/alzheimers.htm

Coetsee, M. J. (2007). The psychological health implications of social support for the Alzheimer caregiver (Unpublished doctoral dissertation). University of Pretoria, Pretoria.

Covinsky, K. E., Palmer, R. M., Fortinsky, R. H., Counsell, S. R., Stewart, A. L., Kresevic, D., & Landefeld, C. S. (2003). Loss of independence in activities of daily living inolder adults hospitalized with medical illnesses: increased vulnerability with age. Journal of the American Geriatrics Society, 51(4), 451-458.

Cuijpers, P. (2005). Depressive disorders in caregivers of dementia patients: a systematic review. Aging and Mental Health, 9(4), 325-330.

Cupidi, C., Realmuto, S., Coco, G. L., Cinturino, A., Talamanca, S., Arnao, V., & Coco, D. L. (2012). Sleep quality in caregivers of patients with Alzheimer's disease and Parkinson's disease and its relationship to quality of life. International Psychogeriatrics, 24(11), 1827-1835.

Gallant, M. P., & Connell, C. M. (2003). Neuroticism and depressive symptoms among spouse caregivers: do health behaviors mediate this relationship? Psychology and Aging, 18(3), 587.

Haley, W. E., Gitlin, L. N., Wisniewski, S. R., Mahoney, D. F., Coon, D. W., Winter, L., & Ory, M. (2004). Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers; findings from the REACH study, Aging and Mental Health, 8(4), 316-329

Heo, G. J. (2009). The role of religious coping in Alzheimer’s disease caregiving. (Unpublished doctoral dissertation). University OF Pittsburg). Retrieved from http://d-scholarship.pitt.edu/10408/1/HeoGrace12182009. pdf

Jiang, T., Tan, L., Chen, Q., Tan, M. S., Zhou, J. S., Zhu, X. C., &Yu, J. T. (2016). A rare coding variant in TREM2 increases risk for Alzheimer's disease in Han Chinese. Neurobiology of Aging, 42, 217-e1.

Kasuya, M., & Meguro, K. (2010). Health economic effect of donepezil treatment for CDR 0.5 converters to Alzheimer's disease as shown by the Markov model. Archives of Gerontology and Geriatrics, 50(3), 295-299.

Kazmi, R., & Muazzam, A. (2017). Development and validation of adjustment problems scale for college/university students. Pakistan Journal of Social and Clinical Psychology, 15(1), 20-26.

Klimova, B., Maresova, P., Valis, M., Hort, J., & Kuca, K. (2015). Alzheimer's disease and language impairments: Social intervention and medical treatment. Clinical Interventions in Aging, 10, 1401-1407.

doi:10.2147/CIA.S89714

Krippendorff, K. (2004). Content analysis: An introduction to its methodology (2nd ed.). Thousand Oaks, CA: Sage.

Mace, N. L., & Rabins, P. V. (2011). The 36-hour day: a family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life (4th ed.). Baltimore, USA: The Johns Hopkins University Press.

Mahoney, K. S., & MacSwan, J. (2005). Reexamining identification and reclassification of English language learners: A critical discussion of select state practices. Bilingual Research Journal, 29(1), 31-42.

Mannion E. (2008). Alzheimer's disease: The psychological and physical effects of the caregiver's role. Nursing Older People, 20(4), 27-32. doi:10.7748/nop2008.05.20.4.27.c8220

Melo, A. (2010). Dificuldadessentidaspelocuidador de um doente com Alzheimer (Unpublished bachelors dissertation). Faculdade Ciências da Saúde da Universidade Fernando Pessoa, Porto.

Montine, T. J., Phelps, C. H., Beach, T. G., Bigio, E. H., Cairns, N. J., Dickson, D. W., ... & Nelson, P. T. (2012). National institute on aging; Alzheimer’s Association. National Institute on Aging-Alzheimer’s Association guidelines for the neuropathologic assessment of Alzheimer’s disease: A practical approach. Actaneuropathol, 123(1), 11.

Neumann, S. M. F., & Dias, C. M. D. S. B. (2013). Doença de Alzheimer: Oquemudanavida do familiar cuidador? Revista Psicologia e Saúde, 5(1).

Norton, M. C., Smith, K. R., Østbye, T., Tschanz, J. T., Corcoran, C., Schwartz, S., & Breitner, J. C. (2010). Greater risk of Dementia when spouse has Dementia? The cache county study. Journal of the American Geriatrics Society, 58(5), 895-900.

Ott, C. H., Sanders, S., & Kelber, S. T. (2007). Grief and personal growth experience of spouses and adult-child caregivers of individuals with Alzheimer's disease and related dementias. The Gerontologist, 47(6), 798- 809.

Parks, S. M., & Novielli, K. D. (2003). Alzheimer's disease caregivers: Hidden patients. Clinical Geriatrics, 11, 34-39.

Pfeffer, A. (2004). Choroba Alzheimera–obraz kliniczny, rozpoznawanie, mo?liwo?ci terapeutyczne zaburze? poznawczych. Przewodnik Lekarza/ Guide for GPs, 7(5), 70-78.

Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and non-caregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250.

Polit, D. F., & Beck, C. T. (2009). Essentials of nursing research: Appraising evidence for nursing practice. Lippincott: Williams & Wilkins.

Polit, D. F., Beck, C. T., & Hungler, B. P. (2001). Essentials of nursing research methods appraisal and utilization. New York, USA: Lippincott.

Qualls, S. H., & Zarit, S. H. (Eds.). (2009). Aging families and caregiving. New York, USA: John Wiley & Sons, Inc.

Rachel, W., & Turkot, A. (2015). How can we help caregivers of patients with Alzheimer’s dementia? Psychotherapies, (1), 59-71.

Rammohan, A., Rao, K., & Subbakrishna, D. K. (2002). Religious coping and psychological wellbeing in carers of relatives with schizophrenia. Actapsychiatrica Scandinavica, 105(5), 356-362. doi:10.1034/j.1600-04 47.2002.1o149.x

Ricoeur, P. (2016). Imagination in discourse and in action. In rethinking imagination, (pp. 118-135). London, UK: Routledge.

Salama, R. A. A., El-Soud, F. A. A. (2012). Caregiver burden from caring for impaired elderly: A cross-sectional study in rural lower Egypt. Italian Journal of Public Health, 9(4). doi:10.2427/8662

Sansoni, J., Vellone, E., & Piras, G. (2004). Anxiety and depression in community-dwelling, Italian Alzheimer's disease caregivers. International Journal of Nursing Practice, 10(2), 93-100.

Schulz, U., Leyens, C., Fritscher, K., Peters, M., Saruhan-Brings, B., Lavigne, O., ... & Caliez, M. (2003). Some recent trends in research and technology of advanced thermal barrier coatings. Aerospace Science and technology, 7(1), 73-80.

Schulze, B., & Rossler, W. (2005). Caregiver burden in mental illness: Review of measurement, findings and interventions in 2004-2005. Current Opinion in Psychiatry, 18(6), 684-691. doi:10.1097/01.yco.000 0179504.87613.00

Sørensen, L. V., Waldorff, F. B., & Waldemar, G. (2008). Early counselling and support for patients with mild Alzheimer's disease and their caregivers: A qualitative study on outcome. Aging and Mental Health, 12(4), 444-450.

Stengård, E. (2002). Caregiving types and psychosocial well-being of caregivers of people with mental illness’s in Finland. Psychiatric Rehabilitation Journal, 26(2), 154-164. doi:10.2975/26.2002. 154.164

Suinn, R. M. (2001). The terrible twos—anger and anxiety: Hazardous to your health. American Psychologist, 56(1), 27.

Tedrus, G. A. S., Fonseca, L. C., Ciancaglio, J. C. B., Mônico, G. S., & Zamperi, C. (2020). Religiosity and quality of life of individuals with Alzheimer’s disease and of caregivers: Relationship with clinical aspects. Dementia & Neuropsychologia, 14(1), 69-74.

Thies, W. (2004). The devastating toll of Alzheimer's disease on Patients and Caregivers. USA Today Magazine, 132(2704), 56-56.

Thommessen, B., Aarsland, D., Braekhus, A., Oksengaard, A. R., Engedal, K., & Laake, K. (2002). The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease. International Journal of Geriatric Psychiatry, 17(1), 78-84.

Thommessen, M., & Rundberget, J. (1993). Nutritional counseling to patients with HIV infection. Can nutritional intervention prevent, expose or relieve symptoms in HIV-positive persons? Tidsskrift for den Norskelaegeforening: Tidsskrift for praktiskmedicin, nyraekke, 113(3), 324-326.

Vitaliano, P. P., Murphy, M., Young, H. M., Echeverria, D., & Borson, S. (2011). Does caring for a spouse with dementia promote cognitive decline? A hypothesis and proposed mechanisms. Journal of the American Geriatrics Society, 59(5), 900-908.

Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one's physical health? A meta-analysis. Psychological Bulletin, 129(6), 946.

Wimo, A., Jönsson, L., Bond, J., Prince, M., Winblad, B., & International, A. D. (2013).The worldwide economic impact of dementia 2010. Alzheimer's & Dementia, 9(1), 1-11.

Wlodarczyk, J. H., Brodaty, H., & Hawthorne, G. (2004). The relationship between quality of life, Mini-Mental State Examination, and the Instrumental Activities of Daily Living in patients with Alzheimer’s disease. Archives of Gerontology and Geriatrics, 39(1), 25-33.

Published

2021-09-30

Issue

Section

Articles