Prisoners of Care: The Experience of Loneliness among Caregivers of Individuals with Alzheimer’s Disease
DOI:
https://doi.org/10.12775/PCh.2020.011Keywords
Alzheimer’s disease, caregivers, lonelinessAbstract
Adjusting to an Alzheimer’s disease diagnosis is a complex process. Caregivers tend to experience feelings of loneliness and isolation, which in turn may have adverse effects on their well-being. Although the detrimental effects of caregiving on psychological and physical health are well documented, more research is needed to give a comprehensive portrait of the caregiving experience, especially in the areas of aloneness and social isolation. Loneliness remains a neglected aspect of the caregiving experience. Results from this study offer important insights into the caregiving experience for psychologists and other healthcare professionals.
References
Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S. & Lachs, M. S. (2014). Caregiver Burden: A Clinical Review. JAMA, 311(10), 1052–1060. DOI:10.1001/jama.2014.304
Alzheimer’s Association (2019). Alzheimer’s Disease Facts and Figures. Alzheimer’s and Dementia, 15(3), 321-387.
Ayalon, L., Shiovitz-Ezra, S. & Palgi, Y. (2013). Associations of loneliness in older married men and women. Aging & Mental Health, 17(1), 33-39. DOI:10.1080/13607863.2012.702725
Boyatzis, R. E. (1998). Transforming qualitative information: Thematic analysis and code development. Thousand Oaks, CA: Sage Publications, Inc.
Brodaty, H. & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in clinical neuroscience, 11(2), 217–228.
De Frias, C. M., Tuokko, H. & Rosenberg, T. (2005). Caregiver physical and mental health predicts reactions to caregiving. Aging and Mental Health, 9(4), 331-336. DOI: 10.1080/13607860500089674.
De Vugt, M. E., Stevens, F., Aalten, P., Lousberg, R., Jaspers, N., Winkens, I., … Verhey, F. R. J. (2003). Behavioural disturbances in dementia patients and quality of the marital relationship. International Journal of Geriatric Psychiatry, 18(2), 149-154. https://doi.org/10.1002/gps.807.
Fauth, E. B., Femia, E. E. & Zarit, S. H. (2016). Resistiveness to care during assistance with activities of daily living in non-institutionalized persons with dementia: associations with informal caregivers’ stress and well-being. Aging and Mental Health, 20(9), 888–898. DOI:10.1080/13607863.2015.1049114.
Grunfeld, E., Coyle, D., Whelan, T., Clinch, J., Reyno, L., Earle, C. C., … Glossop, R. (2004). Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ: Canadian Medical Association Journal (journal de l’Association medicale Canadienne), 170(12), 1795–1801. DOI:10.1503/cmaj.1031205.
Holt-Lunstad, J., Smith, T. B. & Layton, J. B. (2010). Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Medicine, 7(7), e1000316. https://doi.org/10.1371/journal.pmed.1000316.
Karantzoulis, S. & Galvin, J. E. (2011). Distinguishing Alzheimer’s disease from other major forms of dementia. Expert Review of Neurotherapeutics, 11(11), 1579–1591. DOI:10.1586/ern.11.155.
Lavretsky, H. (2005). Stress and depression in informal family caregivers of patients with Alzheimer’s disease. Aging Health 1(1), 117-133. https://doi.org/10.2217/1745509X.1.1.117.
Lee, K., Martin, P. & Poon, L. W. (2017). Predictors of caregiving burden: impact of subjective health, negative affect, and loneliness of octogenarians and centenarians. Aging and Mental Health, 21(1), 1214-1221. https://doi.org/10.1080/13607863.2016.1206512
Lepore, M., Ferrell, A. & Wiener, J. M. (2017). Living Arrangements of People with Alzheimer’s Disease and Related Dementias: Implications for Services and Supports. Research Summit on Dementia Care. https://aspe.hhs.gov/system/files/pdf/257966/LivingArran.pdf
Levinger, G. & Huston, T. L. (1990). The social psychology of marriage. In T. Bradbury & F. Fincham (Eds.), The Psychology of Marriage (pp. 19-58). New York, NY: Guilford Press.
Nieminen, T., Prättälä, R., Martelin, T., Härkänen, T., Hyyppä, M. T., Alanen, E. & Koskinen, S. (2013). Social capital, health behaviours and health: a population-based associational study. BMC public health, 13, 613. DOI:10.1186/1471-2458-13-613.
Perlman, D. & Peplau, L. A. (1981). Toward a Social Psychology of Loneliness. In: S. Duck & R. Gilmour (eds.), Personal Relationships in Disorder (pp. 31–56). London, UK: Academic Press.
Pinquart, M. & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250-267. http://dx.doi.org/10.1037/0882-7974.18.2.250.
Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W. & Ferri, C. P. (2013). The global prevalence of dementia: a systematic review and metaanalysis. Alzheimer’s & Dementia, 9, 63–75. e62. DOI: 10.1016/j.jalz.2012.11.007.
Rafnsson, S. B., Orrell, M., d’Orsi, E., Hogervorst, E. & Steptoe, A. (2017). Loneliness, Social Integration, and Incident Dementia Over 6 Years: Prospective Findings From the English Longitudinal Study of Ageing. The Journals of Gerontology: Series B, gbx087, https://doi.org/10.1093/geronb/gbx087.
Richard, A., Rohrmann, S., Vandeleur, C. L., Schmid, M., Barth, J. & Eichholzer, M. (2017). Loneliness is adversely associated with physical and mental health and lifestyle factors: Results from a Swiss national survey. PLoS ONE 12(7), e0181442. https://doi.org/10.1371/journal.pone.0181442
Rokach, A. (2012). Loneliness Updated: An Introduction. The Journal of Psychology, 146(1-2), 1-6. DOI: 10.1080/00223980.2012.629501.
Saumure, K. & Given, L. M. (2008). Convenience sample. In L. M. Given (ed.), The Sage Encyclopedia of Qualitative Research Methods (pp. 124-125). Thousand Oaks, CA: Sage Publications.
Schulz, R. & Eden, J. (2016). Families Caring for an Aging America. Washington (DC): National Academies Press (US). Retrieved from: https://www.ncbi.nlm.nih.gov/books/NBK396398/.
Sharma, N., Chakrabarti, S. & Grover, S. (2016). Gender differences in caregiving among family - caregivers of people with mental illnesses. World Journal of Psychiatry, 6(1), 717. DOI:10.5498/wjp.v6.i1.7
Singleton, D., Mukadam, N., Livingston, G. & Sommerlad, A. (2017). How people with dementia and carers understand and react to social functioning changes in mild dementia: a UK-based qualitative study. BMJ open 7(7), e016740. DOI:10.1136/bmjopen 2017-016740
Skira, M. M. (2015). Dynamic wage and employment effects of elder parent care. International Economic Review, 56(1), 63–93. https://doi.org/10.1111/iere.12095
Victor, C., Scambler, S., Bond, J. & Bowling, A. (2000). Being alone in later life: Loneliness, social isolation and living alone. Reviews in Clinical Gerontology, 10, 407–417. https://doi.org/10.1017/S0959259800104101
Vitaliano, P. P., Zhang, J. & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129, 946–972. DOI: 10.1037/00332909.129.6.946
Waring, E. M. & Chelune, G. J. (1983). Marital intimacy and self-disclosure. Journal of Clinical Psychology, 39(2), 183-190. http://dx.doi.org/10.1002/10974679(198303)39:2<183::AIDJCLP2270390206>3.0.CO;2-L
Waring, E. M., Patton, D., Neron, C. A. & Linker, W. (1986). Types of marital intimacy and prevalence of emotional illness. Canadian Journal of Psychiatry, 31(8), 720–725. DOI: 10.1177/070674378603100805
Weiss, R. S. (1973). Loneliness: The experience of emotional and social isolation. Cambridge, MA: The MIT Press.
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