Skip to main content Accessibility help
Hostname: page-component-5cfd469876-phsm7 Total loading time: 0.216 Render date: 2021-06-24T07:12:00.202Z Has data issue: true Feature Flags: { "shouldUseShareProductTool": true, "shouldUseHypothesis": true, "isUnsiloEnabled": true, "metricsAbstractViews": false, "figures": true, "newCiteModal": false, "newCitedByModal": true, "newEcommerce": true }

Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis

Published online by Cambridge University Press:  26 January 2017

Kirsty M. Patterson
Department of Clinical Psychology for Older People, The Hull Memory Clinic, Hull, UK
Chris Clarke
Department of Psychological Health and Wellbeing, University of Hull, Hull, UK
Emma L. Wolverson
Department of Psychological Health and Wellbeing, University of Hull, Hull, UK
Esme D. Moniz-Cook
Faculty of Health and Social Care, University of Hull, Hull, UK
E-mail address:



Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts.


A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have.


Four major themes were derived from the findings of the 23 included studies: being treated as an “other” rather than “one of us”; being treated as “lesser” rather than a full, valued member of society; the impact of others’ responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia.


Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia.

Review Article
Copyright © International Psychogeriatric Association 2017 

Access options

Get access to the full version of this content by using one of the access options below.


Ablitt, A., Jones, G. V. and Muers, J. (2009). Living with dementia: a systematic review of the influence of relationship factors. Aging & Mental Health, 13, 497511, doi: 10.1080/13607860902774436.CrossRefGoogle ScholarPubMed
Barnett-Page, E. and Thomas, J. (2009). Methods for the synthesis of qualitative research: a critical review. BMC Medical Research Methodology, 9, 59. doi:10.1186/1471-2288-9-59.CrossRefGoogle ScholarPubMed
Bartlett, R. (2014a). The emergent modes of dementia activism. Ageing and Society, 34, 623644, doi: 10.1017/S0144686X12001158.CrossRefGoogle Scholar
Bartlett, R. (2014b). Citizenship in action: the lived experiences of citizens with dementia who campaign for social change. Disability & Society, 29, 12911304, doi: 10.1080/09687599.2014.924905.CrossRefGoogle Scholar
Beard, R. L. (2004). In their voices: identity preservation and experiences of Alzheimer's disease. Journal of Aging Studies, 18, 415428.CrossRefGoogle Scholar
Beard, R. L. and Fox, P. J. (2008). Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Social Science & Medicine, 66, 15091520, doi: 10.1016/j.socscimed.2007.12.024.CrossRefGoogle ScholarPubMed
Bennett, D. A., Schneider, J. A., Tang, Y., Arnold, S. E. and Wilson, R. S. (2006). The effect of social networks on the relation between Alzheimer's disease pathology and level of cognitive function in old people: a longitudinal cohort study. The Lancet Neurology, 5, 406412, doi: 10.1016/S1474-4422(06).CrossRefGoogle ScholarPubMed
Brohan, E., Slade, M., Clement, S. and Thornicroft, G. (2010). Experiences of mental illness stigma, prejudice and discrimination: a review of measures. BMC Health Services Research, 10, 8090. doi:10.1186/1472-6963-10-80.CrossRefGoogle ScholarPubMed
Caddell, L. S. and Clare, L. (2011). I'm still the same person: the impact of early-stage dementia on identity. Dementia, 10, 379398.CrossRefGoogle Scholar
Clare, L. (2003). Managing threats to self: awareness in early stage Alzheimer's disease. Social Science & Medicine, 57, 10171029.CrossRefGoogle ScholarPubMed
Clare, L., Rowlands, J. M. and Quin, R. (2008). Collective strength: the impact of developing a shared social identity in early-stage dementia. Dementia, 7, 930, doi: 10.1177/1471301207085365.CrossRefGoogle Scholar
Clemerson, G., Walsh, S. and Isaac, C. (2014). Towards living well with young onset dementia: an exploration of coping from the perspective of those diagnosed. Dementia, 13, 451466, doi: 10.1177/1471301212474149.CrossRefGoogle ScholarPubMed
De Boer, M. E., Hertogh, C. M., Dröes, R. M., Riphagen, I. I., Jonker, C. and Eefsting, J. A. (2007). Suffering from dementia – the patient's perspective: a review of the literature. International Psychogeriatrics, 19, 10211039, doi: 0.1017/S1041610207005765.CrossRefGoogle ScholarPubMed
Department of Health. (2015). Prime Minister's Challenge on Dementia 2020. London: Department of Health.Google Scholar
Dixon-Woods, M. et al. (2006). Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Medical Research Methodology, 6, 3548, doi:10.1186/1471-2288-6-35.CrossRefGoogle ScholarPubMed
Earnshaw, V. A. and Quinn, D. M. (2012). The impact of stigma in healthcare on people living with chronic illnesses. Journal of Health Psychology, 17, 157168. doi: 10.1177/1359105311414952.CrossRefGoogle ScholarPubMed
Evans, D. and Lee, E. (2014). Impact of dementia on marriage: a qualitative systematic review. Dementia, 13, 330349.CrossRefGoogle ScholarPubMed
Finlay, L. (2002). Negotiating the swamp: the opportunity and challenge of reflexivity in research practice. Qualitative Research, 2, 209230, doi: 10.1177/146879410200200205.CrossRefGoogle Scholar
Harris, P. B. (2004). The perspective of younger people with dementia: still an overlooked population. Social Work in Mental Health, 2, 1736, doi: 10.1300/J200v02n04_02.CrossRefGoogle Scholar
Harris, P. B. (2012). Maintaining friendships in early stage dementia: factors to consider. Dementia, 11, 305314, doi: 10.1177/1471301211421066.CrossRefGoogle Scholar
Harris, P. B. (2013). Dementia and friendship: the quality and nature of the relationships that remain. The International Journal of Aging and Human Development, 76, 141164, doi: 10.2190/AG.76.2.c.CrossRefGoogle ScholarPubMed
Harris, P. B. and Sterin, G. J. (1999). Insider's perspective: defining and preserving the self of dementia. Journal of Mental Health and Aging, 5, 241256.Google Scholar
Hedman, R., Hansebo, G., Ternestedt, B. M., Hellström, I. and Norberg, A. (2012). How people with alzheimer's disease express their sense of self: analysis using Rom Harré’s theory of selfhood. Dementia, 12, 713733, doi. 10.1177/1471301212444053.CrossRefGoogle ScholarPubMed
Hochgraeber, I., Riesner, C. and Schoppmann, S. (2013). The experience of people with dementia in a social care group: case study. Dementia, 12, 751768. doi: 10.1177/1471301212444300.CrossRefGoogle Scholar
Huber, M., Knottnerus, J. A., Green, L., van der Horst, H., Jadad, A. R., Kromhout, D. and Schnabel, P. (2011). How should we define health?. BMJ, 343, doi: ScholarPubMed
Jacoby, A., Snape, D. and Baker, G. A. (2005). Epilepsy and social identity: the stigma of a chronic neurological disorder. The Lancet Neurology, 4, 171178, doi: 10.1016/S1474-4422(05)01014-8.CrossRefGoogle ScholarPubMed
Katsuno, T. (2005). Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Ageing and Society, 25, 197214, doi: 10.1017/S0144686X0400279X.CrossRefGoogle Scholar
Keyes, C. L. (1998). Social well-being. Social Psychology Quarterly, 61, 121140. doi: 10.2307/2787065.CrossRefGoogle Scholar
Kitwood, T. (1990). The dialectics of dementia: with particular reference to Alzheimer's disease. Ageing and Society, 10, 177196, doi: 10.1017/S0144686X00008060.CrossRefGoogle Scholar
Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press.Google Scholar
La Fontaine, J. and Oyebode, J. R. (2014). Family relationships and dementia: a synthesis of qualitative research including the person with dementia. Ageing and Society, 34, 12431272, doi: 10.1017/S0144686X13000056.CrossRefGoogle Scholar
Langdon, S. A., Eagle, A. and Warner, J. (2007). Making sense of dementia in the social world: a qualitative study. Social Science & Medicine, 64, 9891000, doi:10.1016/j.socscimed.2006.10.029.CrossRefGoogle ScholarPubMed
Levy, B. (1996). Improving memory in old age through implicit self-stereotyping. Journal of Personality and Social Psychology, 71, 10921107, doi: 10.1037/0022-3514.71.6.1092.CrossRefGoogle ScholarPubMed
Lyman, K. A. (1989). Bringing the social back in: a critique of the biomedicalization of dementia. The Gerontologist, 29, 597605, doi: 10.1093/geront/29.5.597.CrossRefGoogle Scholar
MacQuarrie, C. R. (2005). Experiences in early stage Alzheimer's disease: understanding the paradox of acceptance and denial. Aging & Mental Health, 9, 430441, doi: 10.1080/13607860500142853.CrossRefGoogle ScholarPubMed
MacRae, H. (2011). Self and other: the importance of social interaction and social relationships in shaping the experience of early-stage Alzheimer's disease. Journal of Aging Studies, 25, 445456, doi: 10.1016/j.jaging.2011.06.001.CrossRefGoogle Scholar
Mitchell, G. J., Dupuis, S. L. and Kontos, P. (2013). Dementia discourse: from imposed suffering to knowing other-wise. Journal of Applied Hermeneutics, 2, 119.Google Scholar
Mok, E., Lai, C. K., Wong, F. L. and Wan, P. (2007). Living with early‐stage dementia: the perspective of older Chinese people. Journal of Advanced Nursing, 59, 591600, doi: 10.1111/j.1365-2648.2007.04368.x.CrossRefGoogle ScholarPubMed
Moniz-Cook, E. D. (2008). Assessment and psychosocial Intervention for older people with suspected dementia: a memory clinic perspective. In Laidlaw, K. and Knight, B. (eds.), Handbook of Emotional Disorders in Late Life: Assessment and Treatment (pp. 88112). New York: Oxford University Press.Google Scholar
National Institute for Health and Care Excellence (NICE) (2012). Clinical Guideline Development Methods: The Guidelines Manual 2012. London: National Institute for Health and Care Excellence. Available at:; last accessed 12 March 2015.Google Scholar
O'Connor, D., Phinney, A. and Hulko, W. (2010). Dementia at the intersections: a unique case study exploring social location. Journal of Aging Studies, 24, 3039, doi:10.1016/j.jaging.2008.08.001.CrossRefGoogle Scholar
Örulv, L. (2012). Reframing dementia in Swedish self-help group conversations: constructing citizenship. International Journal of Self Help and Self Care, 6, 941, doi: Scholar
O'Sullivan, G., Hocking, C. and Spence, D. (2014). Dementia: the need for attitudinal change. Dementia, 13, 483497, doi: 10.1177/1471301213478241.CrossRefGoogle ScholarPubMed
Pipon-Young, F. E., Lee, K. M., Jones, F. and Guss, R. (2012). ‘I'm not all gone, I can still speak’: the experiences of younger people with dementia. An action research study. Dementia, 11, 597616, doi: 10.1177/1471301211421087.CrossRefGoogle Scholar
Powers, S. M., Dawson, N. T., Krestar, M. L., Yarry, S. J. and Judge, K. S. (2016). ‘I wish they would remember that I forget’: the effects of memory loss on the lives of individuals with mild-to-moderate dementia. Dementia, 15, 10531067, doi: 10.1177/1471301214553236.CrossRefGoogle Scholar
Ross, C. A. and Goldner, E. M. (2009). Stigma, negative attitudes and discrimination towards mental illness within the nursing profession: a review of the literature. Journal of Psychiatric and Mental Health Nursing, 16, 558567, doi: 10.1111/j.1365-2850.2009.01399.x.CrossRefGoogle ScholarPubMed
Sabat, S. R. (2001). The Experience of Alzheimer's Disease: Life Through a Tangled Veil. Oxford: Blackwell Publishers.Google Scholar
Sabat, S. R. (2002). Selfhood and Alzheimer's disease. In Harris, P. B. (ed.), The Person with Alzheimer's Disease: Pathways to Understanding the Experience (pp. 88112). Baltimore: The Johns Hopkins University Press.Google Scholar
Schomerus, G. et al. (2012). Evolution of public attitudes about mental illness: a systematic review and meta‐analysis. Acta Psychiatrica Scandinavica, 125, 440452, doi: 10.1111/j.1600-0447.2012.01826.x.CrossRefGoogle ScholarPubMed
Seligman, M. E. P. and Csikszentmihalyi, M. (2000). Positive psychology: an introduction. American Psychologist, 55, 514, doi: 10.1037/0003-066X.55.1.5.CrossRefGoogle Scholar
Steeman, E., Casterlé, D., Dierckx, B., Godderis, J. and Grypdonck, M. (2006). Living with early‐stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 722738, doi: 10.1111/j.1365-2648.2006.03874.x.CrossRefGoogle ScholarPubMed
Tranvåg, O., Petersen, K. A. and Nåden, D. (2015). Relational interactions preserving dignity experience: perceptions of persons living with dementia. Nursing Ethics, 22, 577593.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M. and Jeon, Y. H. (2016). Social health and dementia: the power of human capabilities. International Pschogeriatric Association, 28, 701703, doi:10.1017/S1041610216000260.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M., Leatherman, S. and Rikkert, M. O. (2011). Quality of care in frail older people: the fragile balance between receiving and giving. BMJ, 342, 12, doi: 10.1136/bmj.d403.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M. and Moniz-Cook, E. (2016). Person-centred dementia care: moving beyond caregiving. Aging & Mental Health, 20, pp. 667668.CrossRefGoogle ScholarPubMed
Wadham, O., Simpson, J., Rust, J. and Murray, C. (2016). Couples' shared experiences of dementia: a meta-synthesis of the impact upon relationships and couplehood. Aging & Mental Health, 20, 463473.CrossRefGoogle ScholarPubMed
Wolverson, E. L., Clarke, C. and Moniz-Cook, E. D. (2016). Living positively with dementia: a systematic review and synthesis of the qualitative literature. Aging & Mental Health, 20, 124.CrossRefGoogle ScholarPubMed
Supplementary material: File

Patterson supplementary material

Table S1

Download Patterson supplementary material(File)
File 99 KB
Supplementary material: File

Patterson supplementary material

Table S2

Download Patterson supplementary material(File)
File 112 KB
Cited by

Send article to Kindle

To send this article to your Kindle, first ensure is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

Note you can select to send to either the or variations. ‘’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis
Available formats

Send article to Dropbox

To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis
Available formats

Send article to Google Drive

To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis
Available formats

Reply to: Submit a response

Please enter your response.

Your details

Please enter a valid email address.

Conflicting interests

Do you have any conflicting interests? *