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Transforming lived places into the connected neighbourhood: a longitudinal narrative study of five couples where one partner has an early diagnosis of dementia

Published online by Cambridge University Press:  16 September 2019

Xia Li*
Affiliation:
National Institute for Health and Care Excellence, Manchester, UK
John Keady
Affiliation:
Division of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK
Richard Ward
Affiliation:
University of Stirling, Stirling, UK
*
*Corresponding author. Email: xia.bushell@googlemail.com

Abstract

To support people with dementia to live at home, a key national and international policy driver is to create dementia-friendly communities which draws attention to the importance of a local neighbourhood and living well with dementia. However, there is a lack of evidence about how people with dementia define and interact with their neighbourhood. This longitudinal narrative research aimed to uncover the meaning, construction and place of neighbourhood in the lives of people with dementia and their care partners through a participatory approach. Five couples, where one partner had an early diagnosis of dementia and capacity to consent, participated in the (up to) one-year mixed qualitative method study. During this time-frame, 65 home visits were conducted, resulting in over 57 hours of interview data alongside the development of other artefacts, such as neighbourhood maps, photographs, diaries and field notes. Narrative analysis was applied within and across the data-sets. This led to the emergence of three themes to describe a connected neighbourhood. First, ‘connecting to people’ is about the couples’ connections with family members, friends and neighbours through a sense of belonging, group identification and responsibilities. Second, ‘connecting to places’ shares the couples’ emotional and biographical attachment to places. Third, ‘connecting to resources’ refers to the couples actively seeking support to live independently and to retain neighbourhood connections.

Type
Article
Copyright
Copyright © Cambridge University Press 2019

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References

Alzheimer's Society (2013) Building Dementia-friendly Communities: A Priority for Everyone. London: Alzheimer's Society.Google Scholar
Alzheimer's Society (2017) What is Dementia? London: Alzheimer's Society.Google Scholar
Baker, R (1968) Ecological Psychology. Stanford, CA: Stanford University Press.Google Scholar
Bartlett, R (2014) Citizenship in action: the lived experiences of citizens with dementia who campaign for social change. Disability and Society 29, 12911304.CrossRefGoogle Scholar
Bartlett, R and Brannelly, T (2018) Life at Home for People with a Dementia. London: Routledge.CrossRefGoogle Scholar
Bartlett, R and O'Connor, D (2007) From personhood to citizenship: broadening the lens for dementia practice and research. Journal of Ageing Studies 21, 107118.CrossRefGoogle Scholar
Bartlett, R and O'Connor, D (2010) Broadening the Dementia Debate: Towards Social Citizenship. London: Policy Press.CrossRefGoogle Scholar
Bergold, J and Thomas, S (2012) Participatory research methods: a methodological approach in motion. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research 13, Article 30.Google Scholar
Blackman, T (2006) Placing Health: Neighbourhood Renewal, Health Improvement and Complexity. Bristol, UK: The Policy Press.Google Scholar
Brannelly, T (2011) That others matter: the moral achievement – care ethics and citizenship in practice with people with dementia. Ethics and Social Welfare 5, 210216.CrossRefGoogle Scholar
British Psychological Society (2015) Dementia and People with Intellectual Disabilities: Guidance on the Assessment, Diagnosis, Interventions and Support of People with Intellectual Disabilities Who Develop Dementia. Leicester, UK: British Psychological Society.Google Scholar
Brittain, KR, Corner, L, Robinson, L and Bond, J (2010) Ageing in place and technologies of place: the lived experience of people with dementia in changing social, physical and technological environments. Sociology Health Illness 32, 272287.CrossRefGoogle ScholarPubMed
Brorsson, A, Ohman, A, Lundberg, S and Nygard, L (2011) Accessibility in public space as perceived by people with Alzheimer's disease. Dementia: The International Journal of Social Research and Practice 10, 587602.CrossRefGoogle Scholar
Connelly, F and Clandinin, D (2006) Narrative inquiry. In Green, J, Camilli, G and Elmore, P (eds), Handbook of Complementary Methods in Education Research. Mahwah, NJ: Lawrence Erlbaum, pp. 375385.Google Scholar
Dempsey, N (2007) Are high quality neighbourhoods socially cohesive? Methodological challenges of unpacking multidimensional concepts. Paper presented at the EURA 10th Anniversary Conference, Glasgow, UK.Google Scholar
Department of Health (2012) Prime Minister's Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015. London: Department of Health.Google Scholar
Department of Health (2015) Prime Minister's Challenge on Dementia 2020. London: Department of Health.Google Scholar
Dewing, J (2007) Participatory research: a method for process consent with persons who have dementia. Dementia: The International Journal of Social Research and Practice 6, 1125.CrossRefGoogle Scholar
Duggan, S, Blackman, T, Martyr, A and van Schalk, P (2008) The impact of early dementia on outdoor life: a ‘shrinking world’? Dementia: The International Journal of Social Research and Practice 7, 191204.CrossRefGoogle Scholar
Folstein, FM, Folstein, ES and McHugh, RP (1975) Mini-mental state: a practical guide for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research 12, 189198.CrossRefGoogle Scholar
Górska, S, Forsyth, K and Maciver, D (2018) Living with dementia: a meta-synthesis of qualitative research on the lived experience. The Gerontologist 58, 180196.Google ScholarPubMed
Hammitt, W, Backlund, E and Bixler, R (2004) Experience use history, place bonding and resource substitution of trout anglers during recreation engagement. Journal of Leisure Research 36, 356378.CrossRefGoogle Scholar
Harding, AJE, Morbey, H, Ahmed, F, Opdebeeck, C, Wang, YY, Williamson, P, Swarbrick, C, Leroi, I, Challis, D, Davies, L, Reeves, D, Holland, F, Hann, M, Hellström, I, Hydén, LC, Burns, A, Keady, J and Reilly, S (2018) Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions. Trials 19, 124.CrossRefGoogle ScholarPubMed
Hellström, I, Nolan, M, Nordenfelt, L and Lundh, U (2007) Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics 14, 608619.CrossRefGoogle ScholarPubMed
Huber, M, Knottnerus, JA, Green, L, van der Horst, H, Jadad, AR, Kromhout, D, Leonard, B and Smid, H (2011) How should we define health? BMJ 343, d4163.CrossRefGoogle ScholarPubMed
Institute of Development Studies (2017) About Participatory Methods. Available at http://www.participatorymethods.org/page/about-participatory-methods.Google Scholar
Keady, J, Campbell, S, Barnes, H, Ward, R, Li, X, Swarbrick, C, Burrow, S and Elvish, R (2012) Neighbourhoods and dementia in the health and social care context: a realist review of the literature and implications for UK policy development. Reviews in Clinical Gerontology 22, 150163.CrossRefGoogle Scholar
Kelly, F and Innes, A (2013) Human rights, citizenship and dementia care nursing. International Journal of Older People Nursing 8, 6170.CrossRefGoogle ScholarPubMed
Kyle, G, Graefe, A, Manning, R and Bacon, J (2004) Effect of involvement and place attachment on recreationists’ perceptions of setting density. Journal of Leisure Research 36, 209231.CrossRefGoogle Scholar
La Gory, M, Ward, R and Sherman, S (1985) The ecology of ageing: neighbourhood satisfaction in an older population. The Sociological Quarterly 26, 405418.CrossRefGoogle Scholar
Low, SM and Altman, I (1992) Place attachment: a conceptual inquiry. In Altman, I and Low, SM (eds), Place Attachment. New York, NY: Plenum, pp. 112.Google Scholar
Massey, D (1994) Space, Place and Gender. Minneapolis, MN: University of Minnesota Press.Google Scholar
Meijering, L, Lettinga, AT, Nanninga, CS and Milligan, C (2017) Interpreting therapeutic landscape experiences through rural stroke survivors’ biographies of disruption and flow. Journal of Rural Studies 51, 275283.CrossRefGoogle Scholar
Mental Health Foundation (2015) Dementia, Rights and the Social Model of Disability. London: Mental Health Foundation.Google Scholar
McGovern, J (2016) Capturing the significance of place in the lived experience of dementia. Qualitative Social Work 16, 664679.CrossRefGoogle Scholar
Mitchell, L and Burton, E (2010) Designing dementia-friendly neighbourhoods: helping people with dementia to get out and about. Journal of Integrated Care 18, 1118.CrossRefGoogle Scholar
National Institute for Health and Care Excellence (2006) Dementia: Supporting People with Dementia and Their Carers in Health and Social Care (CG42). London: National Institute for Health and Care Excellence.Google Scholar
O'Connor, D and Nedlund, AC (2016) Editorial introduction: Special issue on citizenship and dementia. Dementia: The International Journal of Social Research and Practice 15, 285288.CrossRefGoogle ScholarPubMed
Odzakovic, E, Hellström, I, Ward, R and Kullberg, A (2018) ‘Overjoyed that I can go outside’: using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia. Dementia. Available online https://doi.org/10.1177/1471301218817453.CrossRefGoogle ScholarPubMed
Office of the Deputy Prime Minister (2002) Living Places: Cleaner, Safer, Greener. London: Alzheimer's Society.Google Scholar
Oxoby, R (2009) Understanding social inclusion, social cohesion, and social capital. International Journal of Social Economics 36, 11331152.CrossRefGoogle Scholar
Patton, MQ (1999) Enhancing the quality and credibility of qualitative analysis. Health Services Research 34, 11891208.Google ScholarPubMed
Peace, S (2013) Social interactions in public spaces and places: a conceptual overview. In Rowles, G and Bernard, M (eds), Environmental Gerontology: Making Meaningful Places in Old Age. New York, NY: Springer, pp. 2549.Google Scholar
Pezzotti, P, Scalmana, S, Mastromattei, A and Lallo, DD (2008) The accuracy of the MMSE in detecting cognitive impairment when administered by general practitioners: a prospective observational study. BMC Family Practice 9, 111.CrossRefGoogle ScholarPubMed
Pierce, J, Martin, DT and Murphy, JT (2011) Networked place-making: the networked politics of place. Transactions of the British Institute of British Geographers 36, 5470.CrossRefGoogle Scholar
Riessman, CK (1993) Narrative Analysis. London: Sage.Google Scholar
Riessman, CK (2008) Narrative Methods for the Human Sciences. London: Sage.Google Scholar
Robertson, JM (2010) Making Sense and Finding Meaning: Comparing Narratives of Older People with Dementia and Carers About the Quality of an Ordinary Life. PhD Thesis. University of Stirling, Stirling, UK.Google Scholar
Rowles, G (1983) Place and personal identity in old age: observations from Appalachia. Journal of Environmental Psychology 3, 299313.CrossRefGoogle Scholar
Rowles, G and Bernard, M (2013) Environmental Gerontology: Making Meaningful Places in Old Age. New York, NY: Springer.Google Scholar
Satariano, W (2006) Ageing, health, and the environment: an ecological model. In Satariano, W (ed.), Epidemiology of Ageing: An Ecological Approach. Berkeley, CA: Jones and Bartlett, pp. 3984.Google Scholar
Tampubolon, G, Nazroo, J, Keady, J and Pendleton, N (2018) Dementia across local districts in England 2014–2015. International Journal of Geriatric Psychiatry 33, 11271131.CrossRefGoogle Scholar
Taylor-Gooby, P (2008) Reframing Social Citizenship. Oxford: Oxford University Press.CrossRefGoogle Scholar
Tranvåg, O, Petersen, K 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, YH (2016) Social health and dementia: the power of human capabilities. International Psychogeriatrics 28, 701703.CrossRefGoogle ScholarPubMed
Ward, R, Clark, A, Campbell, S, Graham, B, Kullberg, A, Manji, K, Rummery, K and Keady, J (2018) The lived neighbourhood: understanding how people with dementia engage with their local environment. International Psychogeriatrics 30, 867880.CrossRefGoogle ScholarPubMed
Wiersma, E and Denton, A (2016) From social network to safety net: dementia-friendly communities in rural northern Ontario. Dementia: The International Journal of Social Research and Practice 15, 5168.CrossRefGoogle ScholarPubMed
World Health Organization (2017) Global Action Plan on Dementia on the Public Health Response to Dementia 2017–2025. Geneva: World Health Organization.Google Scholar
World Health Organization and Alzheimer's Disease International (2012) Dementia: A Public Health Priority. London: World Health Organization.Google Scholar