The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer's Disease When One Lives Alone

Elena Portacolone, Julene K Johnson, Kenneth E Covinsky, Jodi Halpern, Robert L Rubinstein, Elena Portacolone, Julene K Johnson, Kenneth E Covinsky, Jodi Halpern, Robert L Rubinstein

Abstract

Background: One third of older adults with cognitive impairment live alone and are at high risk for poor health outcomes. Little is known about how older adults who live alone experience the process of receiving a diagnosis of mild cognitive impairment (MCI) or Alzheimer's disease (AD).

Objective: The aim of this study was to understand the effects and meanings of receiving a diagnosis of MCI or AD on the lived experience of older adults living alone.

Methods: This is a qualitative study of adults age 65 and over living alone with cognitive impairment. Participants' lived experiences were elicited through ethnographic interviews and participant observation in their homes. Using a qualitative content analysis approach, interview transcripts and fieldnotes were analyzed to identify codes and themes.

Results: Twenty-nine older adults and 6 members of their social circles completed 114 ethnographic interviews. Core themes included: relief, distress, ambiguous recollections, and not knowing what to do. Participants sometimes felt uplifted and relieved by the diagnostic process. Some participants did not mention having received a diagnosis or had only partial recollections about it. Participants reported that, as time passed, they did not know what to do with regard to the treatment of their condition. Sometimes they also did not know how to prepare for a likely worsening of their condition, which they would experience while living alone.

Conclusion: Findings suggest the need for more tailored care and follow-up as soon as MCI or AD is diagnosed in persons living alone.

Keywords: Alzheimer’s disease; cognitive dysfunction; diagnosis; health services; residence characteristics.

References

    1. Amjad H, Roth DL, Samus QM, Yasar S, Wolff JL. Potentially unsafe activities and living conditions of older adults with dementia. J Am Geriatr Soc. 2016;64:1223–1232.
    1. Sibley A, MacKnight C, Rockwood K, Fisk J, Gauthier S, Guzman DA, Hogan DB. The effect of the living situation on the severity of dementia at diagnosis. Dement Geriatr Cogn Disord. 2002;13:40–45.
    1. Gibson AK, Richardson VE. Living alone with cognitive impairment. Am J Alzheimers Dis Other Demen. 2017;32:56–62.
    1. Nelson T, Fernandez JL, Livingston G, Knapp M, Katona C. Does diagnosis determine delivery? The Islington study of older people’s needs and health costs. Psychol Med. 2004;34:147–155.
    1. Tierney MC. Neuropsychological predictors of self-neglect in cognitively impaired older people who live alone. Am J Geriatr Psychiatry. 2007;15:140–148.
    1. Miranda-Castillo C, Woods B, Orrell M. People with dementia living alone: What are their needs and what kind of support are they receiving? Int Psychogeriatr. 2010;10:1–11.
    1. Lehmann S, Black B, Shore A, Kasper J, Rabins P. Living alone with dementia: Lack of awareness adds to functional and cognitive vulnerabilities. Int Psychogeriatr. 2010;22:778–784.
    1. De Witt L, Ploeg J. Caring for older people living alone with dementia: Healthcare professionals’ experiences. Dementia (London) 2016;15:221–238.
    1. Portacolone E, Covinsky KE, Rubinstein RL, Halpern J, Johnson JK. The precarity of older adults living alone with cognitive impairment. Gerontologist. 2018 doi: 10.1093/geront/gnx193.
    1. Pratt R, Wilkinson H. A psychosocial model of understanding the experience of receiving a diagnosis of dementia. Dementia. 2003;2:181–199.
    1. Smith AP, Beattie BL. Disclosing a diagnosis of Alzheimer’s disease: Patient and family experiences. Can J Neurol Sci. 2001;28(Suppl 1):S67–71.
    1. Zou Y, Song N, Hu YB, Gao Y, Zhang YQ, Zhao QH, Guo QH, Li X, Li GJ, Xiao SF, Chen SD, Ren RJ, Wang G. Caregivers’ attitude toward disclosure of Alzheimer’s disease diagnosis in Urban China. Int Psychogeriatr. 2017;29:1849–1855.
    1. 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;22:786–804.
    1. Beard RL. Living with Alzheimer’s. New York University Press; New York: 2016.
    1. Milby E, Murphy G, Winthrop A. Diagnosis disclosure in dementia: Understanding the experiences of clinicians and patients who have recently given or received a diagnosis. Dementia (London) 2017;16:611–628.
    1. Gjodsbol IM, Svendsen MN. Recognizing dementia: Constructing deconstruction in a Danish memory clinic. Med Anthropol Q. 2017 doi: 10.1111/maq.12365.
    1. Campbell S, Manthorpe J, Samsi K, Abley C, Robinson L, Watts S, Bond J, Keady J. Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia. J Aging Stud. 2016;37:40–47.
    1. Aminzadeh F, Byszewski A, Molnar FJ, Eisner M. Emotional impact of dementia diagnosis: Exploring persons with dementia and caregivers’ perspectives. Aging Ment Health. 2007;11:281–290.
    1. Swallow J. Expectant futures and an early diagnosis of Alzheimer’s disease: Knowing and its consequences. Soc Sci Med. 2017;184:57–64.
    1. Lian Y, Xiao LD, Zeng F, Wu X, Wang Z, Ren H. The experiences of people with dementia and their caregivers in dementia diagnosis. J Alzheimers Dis. 2017;59:1203–1211.
    1. Vince A, Clarke C, Wolverson EL. The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: A qualitative study. Int Psychogeriatr. 2017;29:93–104.
    1. Brown P, Lyson M, Jenkins T. From diagnosis to social diagnosis. Soc Sci Med. 2011;73:939–943.
    1. Brossard B, Carpentier N. To what extent does diagnosis matter? Dementia diagnosis, trouble interpretation and caregiving network dynamics. Sociol Health Illn. 2017;39:566–580.
    1. Meuleners LB, Hobday MB. A population-based study examining injury in older adults with and without dementia. J Am Geriatr Soc. 2017;65:520–525.
    1. Ennis SK, Larson EB, Grothaus L, Helfrich CD, Balch S, Phelan EA. Association of living alone and hospitalization among community-dwelling elders with and without dementia. J Gen Intern Med. 2014;29:1451–1459.
    1. Portacolone E. The myth of independence for older Americans living alone in the Bay Area of San Francisco: A critical reflection. Ageing Soc. 2011;27:166–174.
    1. Luppa M, Luck T, Weyerer S, Konig HH, Brahler E, Riedel-Heller SG. Prediction of institutionalization in the elderly. A systematic review. Age Ageing. 2010;39:31–38.
    1. Soto M, Andrieu S, Gares V, Cesari M, Gillette-Guyonnet S, Cantet C, Vellas B, Nourhashemi F. Living alone with Alzheimer’s disease and the risk of adverse outcomes: Results from the Plan de Soin et d’Aide dans la Maladie d’Alzheimer study. J Am Geriatr Soc. 2015;63:651–658.
    1. Wattmo C, Londos E, Minthon L. Solitary living in Alzheimer’s disease over 3 years: Association between cognitive and functional impairment and community-based services. Clin Interv Aging. 2014;9:1951–1962.
    1. Brodaty H, Heffernan M, Kochan NA, Draper B, Trollor JN, Reppermund S, Slavin MJ, Sachdev PS. Mild cognitive impairment in a community sample: The Sydney Memory and Ageing Study. Alzheimers Dement. 2013;9:310–317. e311.
    1. Creswell J. Qualitative Inquiry and Research Design: Choosing Among Five Traditions. Sage; Thousand Oaks: 1998.
    1. Rubinstein R. Anthropological methods in gerontological research - Entering the realm of meaning. J Aging Stud. 1992;6:57–66.
    1. Malterud K. Qualitative research: Standards, challenges, and guidelines. Lancet. 2001;358:483–488.
    1. Spradley JP. The Ethnographic Interview. Wadsworth; Belmont, CA: 2016. [1979]
    1. McKillop J, Wilkinson H. Make it easy on yourself! Advice to reseachers from someone with dementia on being interviewed. Dementia. 2004;3:117–125.
    1. Kuzel A, Like R, editors. Standard of Trustworthiness for Qualitative Studies in Primary Care. Sage Publications; Thousand Oaks, CA: 1992.
    1. Schreier M. Qualitative Content Analysis in Practice. Sage; Thousand Oaks, CA: 2012.
    1. Forman J, Damschroder J. Qualitative content analysis. In: Jacoby L, Siminoff L, editors. Empirical Methods for Bioethics: A Primer. Jai Press Elsevier; Amsterdam: 2008. pp. 39–62.
    1. Luborsky M. Identification and analysis of themes and patterns. In: Gubrium J, Sankar A, editors. Qualitative Methods in Older Age Research. Sage Publications; Newbury Park: 1994.
    1. Miles MB, Huberman MA. Qualitative Data Analysis: A Methods Sourcebook. Sage Publishers; Thousand Oaks: 2014.
    1. Crabtree BF, Miller B. A template to text analysis: Developing and using code books. In: Morse J, editor. Qualitative Health Research. Sage Publishers; Newbury Park: 1992.
    1. Corbin J, Strauss A. Basics of Qualitative Research. Sage; Thousand Oaks: 2008.
    1. Schoenberg NE, Miller EA, Pruchno R. The qualitative portfolio at The Gerontologist: Strong and getting stronger. Gerontologist. 2011;51:281–284.
    1. Grill JD, Cox CG, Kremen S, Mendez MF, Teng E, Shapira J, Ringman JM, Apostolova LG. Patient and caregiver reactions to clinical amyloid imaging. Alzheimers Dement. 2017;13:924–932.
    1. Parsons T. The sick role and the role of the physician reconsidered. Millberry Memorial Fund Quarterly. 1975:257–278.
    1. Carpenter BD, Xiong C, Porensky EK, Lee MM, Brown PJ, Coats M, Johnson D, Morris JC. Reaction to a dementia diagnosis in individuals with Alzheimer’s disease and mild cognitive impairment. J Am Geriatr Soc. 2008;56:405–412.
    1. Portacolone E, Berridge C, Johnson KJ, Schicktanz S. Time to reinvent the science of dementia: The need for care and social integration. Aging Ment Health. 2014;18:269–275.
    1. Leifer BP. Early diagnosis of Alzheimer’s disease: Clinical and economic benefits. J Am Geriatr Soc. 2003;51:S281–288.
    1. Husband HJ. Diagnostic disclosure in dementia: An opportunity for intervention? Int J Geriatr Psychiatry. 2000;15:544–547.
    1. Jha A, Tabet N, Orrell M. To tell or not to tell-comparison of older patients’ reaction to their diagnosis of dementia and depression. Int J Geriatr Psychiatry. 2001;16:879–885.
    1. Clare L. Managing threats to self: Awareness in early stage Alzheimer’s disease. Soc Sci Med. 2003;57:1017–1029.
    1. Young RF. Medical experiences and concerns of people with Alzheimer’s disease. In: Harris P, editor. The Person with Alzheimer’s Disease. The John Hopkins University Press; Baltimore & London: 2002. pp. 29–46.
    1. Clare L. We’ll fight it as long as we can: Coping with the onset of Alzheimer’s disease. Aging Ment Health. 2002;6:139–148.
    1. Gomersall T, Astell A, Nygard L, Sixsmith A, Mihailidis A, Hwang A. Living with ambiguity: A metasynthesis of qualitative research on mild cognitive impairment. Gerontologist. 2015;55:892–912.
    1. Bamford C, Lamont S, Eccles M, Robinson L, May C, Bond J. Disclosing a diagnosis of dementia: A systematic review. Int J Geriatr Psychiatry. 2004;19:151–169.
    1. Grenier AM, Looyd L, Phillipson C. Precarity in late life: Rethinkig dementia as a frail old age. Sociol Health Illn. 2017;39:318–330.
    1. Waite L. A place and space for a critical geography of precarity? Geography Compass. 2009;3:412–433.
    1. Hill L, Walton I. Screening for dementia: Diagnosis. and then what? Progress in Neurology and Psychiatry. 2013 Mar-Apr;
    1. Rubinstein RL, de Medeiros K. “Successful aging,” gerontological theory and neoliberalism: A qualitative critique. Gerontologist. 2015;55:34–42.
    1. Gibbons H. Compulsory youthfulness: Intersections of ableism and ageism in “successful aging” discourses. Rev Disabil Stud. 2016;12:70–88.
    1. Beck U, Beck-Gernsheim E. Individualization: Institutionalized Individualism and its Social and Political Consequences. Sage Publications; London: 2002.
    1. Polivka L, Luo B. The neoliberal political economy and erosion of retirement security. Gerontologist. 2015;55:183–190.
    1. Mol A. The Logic of Care: Health and the Problem of Patient Choice. Routledge; London; New York: 2008.
    1. Henwood F, Harris R, Spoel P. Informing health? Negotiating the logics of choice and care in everyday practices of ‘healthy living’. Soc Sci Med. 2011;72:2026–2032.
    1. Harris P. The experience of living alone with early stage Alzheimer’s disease: What are the person’s concerns? Alzheimers Care Q. 2006;7:84–94.

Source: PubMed

Sponsorit ja yhteistyökumppanit

Sairaudet

Huumeiden interventiot

3
Tilaa