Thematic analysis of blog narratives written by people with Alzheimer's disease and other dementias and care partners
- PMID: 29642716
- PMCID: PMC6027602
- DOI: 10.1177/1471301218768162
Thematic analysis of blog narratives written by people with Alzheimer's disease and other dementias and care partners
Abstract
Limited research takes a socio-biographical approach to study the experiences and perspectives of individuals affected by Alzheimer’s disease and related dementias. The purpose of this study was to thematically analyze blog narratives written by people with Alzheimer’s disease and related dementia and care partners in order to increase understanding of their experiences. Nineteen blogs written by people with Alzheimer’s disease and related dementia and 44 blogs written by care partners were analyzed. The first two authors utilized line-by-line open coding to analyze five posts from each group for the development of a codebook. Using NVivo software, the first author proceeded to code the remaining blogs for emergent themes and subcategories. Emergent themes included (1) effects of Alzheimer’s disease and related dementia on the person with Alzheimer’s disease and related dementia and/or the care partner; (2) seeing the positives; (3) feeling out of control; (4) advocacy and empowerment; (5) coping mechanisms and compensatory strategies; and (6) candid descriptions of experiences with Alzheimer’s disease and related dementia. These themes also encompassed numerous subcategories that are discussed in this paper. Results from this study provide insights into the experiences of individuals affected by Alzheimer’s disease and related dementia. Writers discussed several topics that are consistent with research on illness narratives of individuals with chronic diseases, including loss of identity, strategies for coping, and poignant descriptions of life with the disease. This study provides information in the form of overlapping themes from first-person perspectives of numerous individuals affected by Alzheimer’s disease and related dementia. This type of data is crucial to understand the experiences of people who live with ADRD.
Keywords: Alzheimer’s disease; care partner; narratives; qualitative analysis; writing.
Conflict of interest statement
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Similar articles
-
Narrating dementia: self and community in an online forum.Qual Health Res. 2013 Sep;23(9):1215-27. doi: 10.1177/1049732313501725. Epub 2013 Aug 1. Qual Health Res. 2013. PMID: 23907588
-
Nonpharmacological Strategies Used By Family Caregivers of Persons With Alzheimer's Disease and Related Dementias as Presented in Blogs.J Gerontol Nurs. 2019 Jul 1;45(7):25-35. doi: 10.3928/00989314-20190612-04. J Gerontol Nurs. 2019. PMID: 31237659
-
'Journeys' in the life-writing of adult-child dementia caregivers.J Med Humanit. 2013 Sep;34(3):385-97. doi: 10.1007/s10912-013-9233-9. J Med Humanit. 2013. PMID: 23728880
-
Blog/web log - a new easy and interactive website building tool for a non-net savvy radiologist.J Thorac Imaging. 2007 May;22(2):115-9. doi: 10.1097/01.rti.0000213578.47398.aa. J Thorac Imaging. 2007. PMID: 17527112 Review.
-
Ethical considerations in the study of online illness narratives: a qualitative review.J Adv Nurs. 2011 May;67(5):945-53. doi: 10.1111/j.1365-2648.2010.05563.x. Epub 2011 Jan 13. J Adv Nurs. 2011. PMID: 21231955 Review.
Cited by
-
Technological interventions in European dementia care: a systematic review of acceptance and attitudes among people living with dementia, caregivers, and healthcare workers.Front Neurol. 2024 Oct 2;15:1474336. doi: 10.3389/fneur.2024.1474336. eCollection 2024. Front Neurol. 2024. PMID: 39416661 Free PMC article.
-
Representations of the experiences of people with dementia in Irish newspapers.Dementia (London). 2022 May;21(4):1343-1362. doi: 10.1177/14713012221077526. Epub 2022 Mar 30. Dementia (London). 2022. PMID: 35354057 Free PMC article.
-
Navigating who I was and who I am online: How people with dementia use social media platforms to support identity.Dementia (London). 2025 May;24(4):647-665. doi: 10.1177/14713012241292659. Epub 2024 Oct 11. Dementia (London). 2025. PMID: 39392942 Free PMC article.
-
A qualitative exploration of people living with dementia's experiences of using everyday technology.Digit Health. 2025 Jun 30;11:20552076251351538. doi: 10.1177/20552076251351538. eCollection 2025 Jan-Dec. Digit Health. 2025. PMID: 40605995 Free PMC article.
-
Safe Enough to Share: Setting the Dementia Agenda Online.CSCW Conf Comput Support Coop Work. 2019 Nov;3:85. CSCW Conf Comput Support Coop Work. 2019. PMID: 32601621 Free PMC article.
References
-
- Alzheimer’s Association. 2017 Alzheimer’s disease facts and figures. 2017 Retrieved from www.alz.org/documents_custom/2017-facts-and-figures.pdf. - PubMed
-
- Basting AD. Looking back from loss: Views of the self in Alzheimer’s disease. Journal of Aging Studies. 2003;17:87–99.
-
- Beach Thielst C. Weblogs: A communication tool. Journal of Healthcare Management; Mumbai. 2007;52:287–289. - PubMed
-
- Beard R. In their voices: Identity preservation and experiences of Alzheimer’s disease. Journal of Aging Studies. 2004;18:415–428.
-
- Beard RL, Fetterman DJ, Wu B, Bryant L. The two voices of Alzheimer’s: Attitudes toward brain health by diagnosed individuals and support persons. The Gerontologist. 2009;49(Suppl 1):S40–S49. - PubMed
MeSH terms
Grants and funding
LinkOut - more resources
Full Text Sources
Other Literature Sources
Medical