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

  • Kirsty M. Patterson (a1), Chris Clarke (a2), Emma L. Wolverson (a2) and Esme D. Moniz-Cook (a3)
Abstract
Background:

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.

Method:

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.

Results:

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.

Conclusion:

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.

Copyright
Corresponding author
Correspondence should be addressed to: Kirsty M. Patterson, Department of Clinical Psychology for Older People, The Hull Memory Clinic, 39-41 Coltman Street, Hull HU3 2SG, UK. Phone: +44 1482 336618. Email: kirstypatterson@nhs.net.
References
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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.
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.
Bartlett, R. (2014a). The emergent modes of dementia activism. Ageing and Society, 34, 623644, doi: 10.1017/S0144686X12001158.
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.
Beard, R. L. (2004). In their voices: identity preservation and experiences of Alzheimer's disease. Journal of Aging Studies, 18, 415428.
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.
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).
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.
Caddell, L. S. and Clare, L. (2011). I'm still the same person: the impact of early-stage dementia on identity. Dementia, 10, 379398.
Clare, L. (2003). Managing threats to self: awareness in early stage Alzheimer's disease. Social Science & Medicine, 57, 10171029.
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.
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.
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.
Department of Health. (2015). Prime Minister's Challenge on Dementia 2020. London: Department of Health.
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.
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.
Evans, D. and Lee, E. (2014). Impact of dementia on marriage: a qualitative systematic review. Dementia, 13, 330349.
Finlay, L. (2002). Negotiating the swamp: the opportunity and challenge of reflexivity in research practice. Qualitative Research, 2, 209230, doi: 10.1177/146879410200200205.
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.
Harris, P. B. (2012). Maintaining friendships in early stage dementia: factors to consider. Dementia, 11, 305314, doi: 10.1177/1471301211421066.
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.
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.
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.
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.
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: https://doi.org/10.1136/bmj.d4163.
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.
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.
Keyes, C. L. (1998). Social well-being. Social Psychology Quarterly, 61, 121140. doi: 10.2307/2787065.
Kitwood, T. (1990). The dialectics of dementia: with particular reference to Alzheimer's disease. Ageing and Society, 10, 177196, doi: 10.1017/S0144686X00008060.
Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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: https://publications.nice.org.uk/pmg6b; last accessed 12 March 2015.
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.
Örulv, L. (2012). Reframing dementia in Swedish self-help group conversations: constructing citizenship. International Journal of Self Help and Self Care, 6, 941, doi: https://doi.org/10.2190/SH.6.1.c.
O'Sullivan, G., Hocking, C. and Spence, D. (2014). Dementia: the need for attitudinal change. Dementia, 13, 483497, doi: 10.1177/1471301213478241.
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.
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.
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.
Sabat, S. R. (2001). The Experience of Alzheimer's Disease: Life Through a Tangled Veil. Oxford: Blackwell Publishers.
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.
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.
Seligman, M. E. P. and Csikszentmihalyi, M. (2000). Positive psychology: an introduction. American Psychologist, 55, 514, doi: 10.1037/0003-066X.55.1.5.
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.
Tranvåg, O., Petersen, K. A. and Nåden, D. (2015). Relational interactions preserving dignity experience: perceptions of persons living with dementia. Nursing Ethics, 22, 577593.
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.
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.
Vernooij-Dassen, M. and Moniz-Cook, E. (2016). Person-centred dementia care: moving beyond caregiving. Aging & Mental Health, 20, pp. 667668.
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.
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.
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International Psychogeriatrics
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