3,748
Views
3
CrossRef citations to date
0
Altmetric
Dementia Care

Participation as means for adaptation in dementia: a conceptual model

, ORCID Icon &
Pages 499-511 | Received 22 May 2019, Accepted 15 Nov 2019, Published online: 02 Dec 2019

References

  • Australian Government. (2016). Clinical practice guidelines for dementia in Australia. Canberra: Cognitive Decline Partnership Centre.
  • Bartlett, R., & O’Connor, D. (2010). Broadening the dementia debate: Towards social citizenship. Bristol, UK: Policy Press Scholarship Online.
  • Batsch, N. L., & Mittelman, M. S. (2012). World Alzheimer Report 2012 – Overcoming the stigma of dementia. Alzheimer's Disease International. Retrieved from http://www.alz.co.uk/research/WorldAlzheimerReport2012.pdf
  • Bender, M. P., & Cheston, R. (1997). Inhabitants of a lost kingdom: A model of the subjective experiences of dementia. Ageing and Society, 17(5), 513–532. doi:10.1017/S0144686X97006570
  • Birt, L., Griffiths, R., Charlesworth, G. M., Higgs, P. F. D., Orrell, M., Leung, P., & Poland, F. (2019). Maintaining social connections in dementia: A qualitative synthesis. Qualitative Health Research. doi:10.1177/1049732319874782
  • Bogdan, R., & Biklen, S. (1998). Qualitative research for education: An introduction to theory and methods. Boston: Allyn & Bacon.
  • Bosco, A., Schneider, J., Coleston-Shields, D. M., Higgs, P., & Orrell, M. (2019). The social construction of dementia: Systematic review and metacognitive model of enculturation. Maturitas, 120, 12–22. doi:10.1016/j.maturitas.2018.11.009
  • Boyle, G. (2014). Recognising the agency of people with dementia. Disability & Society, 29(7), 1130–1144. doi:10.1080/09687599.2014.910108
  • Brittain, K., Corner, L., Robinson, L., & 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 of Health & Illness, 32(2), 272–287. doi:10.1111/j.1467-9566.2009.01203.x
  • Brodaty, H., Draper, B. M., & Low, L. F. (2003). Behavioural and psychological symptoms of dementia: A seven‐tiered model of service delivery. Medical Journal of Australia, 178(5), 231–234. doi:10.5694/j.1326-5377.2003.tb05169.x
  • Bronfenbrenner, U. (1994). Ecological models of human development. In M. Gauvain and M. Cole (Eds.), Readings on the development of children (pp. 37–43). New York: Freeman.
  • Bryden, C. (2015). Nothing about us without us. London: Jassica Kingsley.
  • Bunn, F., Goodman, C., Sworn, K., Rait, G., Brayne, C., Robinson, L., … Iliffe, S. (2012). Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: A systematic review of qualitative studies. PLoS Medicine, 9(10), e1001331. doi:10.1371/journal.pmed.1001331
  • Caddell, L. S., & Clare, L. (2010). The impact of dementia on self and identity: A systematic review. Clinical Psychology Review, 30(1), 113–126. doi:10.1016/j.cpr.2009.10.003
  • Cilliers, P. (2013). Understanding complex systems. In J. P. Strumberg & C. M. Martin (Eds.), Handbook of systems and complexity in health (pp. 27–38). New York: Springer Science & Business Media.
  • Cheung, D. S., Chien, W. T., & Lai, C. K. (2011). Conceptual framework for cognitive function enhancement in people with dementia. Journal of Clinical Nursing, 20(11-12), 1533–1541. doi:10.1111/j.1365-2702.2010.03584.x
  • Clandinin, D. J. (2013). Engaging in narrative inquiry. Walnut Creek, CA: Left Coast Press, Inc.
  • Clare, L. (2002). We'll fight it as long as we can: Coping with the onset of Alzheimer's disease. Aging & Mental Health, 6(2), 139–148. doi:10.1080/13607860220126826
  • Clare, L. (2004). The construction of awareness in early‐stage Alzheimer's disease: A review of concepts and models. British Journal of Clinical Psychology, 43(2), 155–175. doi:10.1348/014466504323088033
  • Dewing, J. (2008). Personhood and dementia: Revisiting Tom Kitwood’s ideas. International Journal of Older People Nursing, 3(1), 3–13. doi:10.1111/j.1748-3743.2007.00103.x
  • Dewing, J. (2019). On being a person. In T. Kitwood (D. Brooker Ed.), Dementia reconsidered, revised. The person still comes first (pp.17–23). London: Open University Press.
  • DiCorcia, J. A., & Tronick, E. (2011). Quotidian resilience: Exploring mechanisms that drive resilience from a perspective of everyday stress and coping. Neuroscience & Biobehavioral Reviews, 35(7), 1593–1602. doi:10.1016/j.neubiorev.2011.04.008
  • Dorenlot, P. (2005). Editorial: Applying the social model of disability to dementia: Present-day challenges. Dementia, 4(4), 459–462.
  • Downs, M., Clare, L., & MacKenzie, J. (2006). Understandings of dementia: Explanatory models and their implications for the person with dementia and therapeutic effort. In J. C. Hughes, S. J. Louw, & S. R. Sabat (Eds.), Dementia: Mind, meaning and the person (pp. 235–258). Oxford, UK: Oxford University Press.
  • Dröes, R. M. (1991). In Beeweging: Over Psychosociale Hulpverlening aan Demente Ouderen [In movement: On psychosocial care for people with dementia]. Academic thesis: Amsterdam: Vrije Universiteit.
  • Estey-Burtt, B., & Baldwin, C. (2014). Ethics in dementia care: Storied lives, storied ethics. In M. Downs, & B. Bowers (Eds.), Excellence in dementia care. Research into practice (pp.53–65). Maidenhead, England: Open University Press.
  • Fallahpour, M., Borell, L., Luborsky, M., & Nygård, L. (2016). Leisure-activity participation to prevent later-life cognitive decline: A systematic review. Scandinavian Journal of Occupational Therapy, 23(3), 162–197. doi:10.3109/11038128.2015.1102320
  • Fetherstonhaugh, D., Tarzia, L., & Nay, R. (2013). Being central to decision making means I am still here! The essence of decision making for people with dementia. Journal of Aging Studies, 27(2), 143–150. doi:10.1016/j.jaging.2012.12.007
  • Finfgeld-Connett, D. (2014). Metasynthesis findings: Potential versus reality. Qualitative Health Research, 24(11), 1581–1591. doi:10.1177/1049732314548878
  • Finfgeld-Connett, D. (2016). The future of theory-generating meta-synthesis research. Qualitative Health Research, 26(3), 291–293. doi:10.1177/1049732315616628
  • Fletcher, A., Jamal, F., Moore, G., Evans, R. E., Murphy, S., & Bonell, C. (2016). Realist complex intervention science: Applying realist principles across all phases of the Medical Research Council framework for developing and evaluating complex interventions. Evaluation, 22(3), 286–303. doi:10.1177/1356389016652743
  • Garma, C. T. (2017). Influence of health personnel's attitudes and knowledge in the detection and reporting of elder abuse: An exploratory systematic review. Psychosocial Intervention, 26(2), 73–91.
  • Gilmour, J. A., & Huntington, A. D. (2005). Finding the balance: Living with memory loss. International Journal of Nursing Practice, 11(3), 118–124. doi:10.1111/j.1440-172X.2005.00511.x
  • Górska, S., Forsyth, K., Irvine, L., Maciver, D., Prior, S., Whitehead, J., … Reid, J. (2013). Service-related needs of older people with dementia: Perspectives of service users and their unpaid carers. International Psychogeriatrics, 25(7), 1107–1114. doi:10.1017/S1041610213000343
  • Górska, S., Forsyth, K., & Maciver, D. (2018). Living with dementia: A meta-synthesis of qualitative research on the lived experience. The Gerontologist, 58(3), e180–e196.
  • Gurland, B. J., & Gurland, R. V. (2009). The choices, choosing model of quality of life: Description and rationale. International Journal of Geriatric Psychiatry, 24(1), 90–95. doi:10.1002/gps.2110
  • Hall, G. R., & Buckwalter, K. C. (1987). Progressively lowered stress threshold; a conceptual model for care of adults with Alzheimer's disease. Archives of Psychiatric Nursing, 1(6), 399–406.
  • Han, A., Radel, J., McDowd, J. M., & Sabata, D. (2016). Perspectives of people with dementia about meaningful activities: A synthesis. American Journal of Alzheimer's Disease & Other Dementiasr, 31(2), 115–123. doi:10.1177/1533317515598857
  • Hansen, A., Hauge, S., Hellesø, R., & Bergland, Å. (2018). Purchasers’ deliberations on psychosocial needs within the process of allocating healthcare services for older home-dwelling persons with dementia: A qualitative study. BMC Health Services Research, 18(1), 746. doi:10.1186/s12913-018-3550-7
  • Harman, G., & Clare, L. (2006). Illness representations and lived experience in early-stage dementia. Qualitative Health Research, 16(4), 484–502. doi:10.1177/1049732306286851
  • Hemmingsson, H., & Jonsson, H. (2005). An occupational perspective on the concept of participation in the International Classification of Functioning, Disability and Health—some critical remarks. American Journal of Occupational Therapy, 59(5), 569–576. doi:10.5014/ajot.59.5.569
  • Herholz, S. C., Herholz, R. S., & Herholz, K. (2013). Non-pharmacological interventions and neuroplasticity in early stage Alzheimer's disease. Expert Review of Neurotherapeutics, 13(11), 1235–1245. doi:10.1586/14737175.2013.845086
  • Holst, G., & Hallberg, I. R. (2003). Exploring the meaning of everyday life, for those suffering from dementia. American Journal of Alzheimer's Disease & Other Dementias, 18(6), 359–365. doi:10.1177/153331750301800605
  • Howorth, P., & Saper, J. (2003). The dimensions of insight in people with dementia. Aging & Mental Health, 7(2), 113–122. doi:10.1080/1360786031000072286
  • Imms, C., Granlund, M., Wilson, P. H., Steenbergen, B., Rosenbaum, P. L., & Gordon, A. M. (2017). Participation, both a means and an end: A conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine & Child Neurology, 59(1), 16–25. doi:10.1111/dmcn.13237
  • Innes, A., & Manthorpe, J. (2013). Developing theoretical understandings of dementia and their application to dementia care policy in the UK. Dementia, 12(6), 682–696. doi:10.1177/1471301212442583
  • Jovchelovitch, S., & Bauer, M. W. (2000). Narrative interviewing. Retrieved from http://eprints.lse.ac.uk/2633.
  • Kales, H. C., Gitlin, L. N., & Lyketsos, C. G. (2015). Assessment and management of behavioral and psychological symptoms of dementia. BMJ, 350(mar02 7), h369. doi: https://doi.org/10.1136/bmj.h369 doi:10.1136/bmj.h369
  • Karlsson, E., Savenstedt, S., Axelsson, K., & Zingmark, K. (2014). Stories about life narrated by people with Alzheimer's disease. Journal of Advanced Nursing, 70(12), 2791–2799. doi:10.1111/jan.12429
  • Keady, J., Jones, L., Ward, R., Koch, S., Swarbrick, C., Hellström, I., … Williams, S. (2013). Introducing the bio‐psycho‐social‐physical model of dementia through a collective case study design. Journal of Clinical Nursing, 22(19-20), 2768–2777. doi:10.1111/j.1365-2702.2012.04292.x
  • Keenan, E. K. (2010). Seeing the forest and the trees: Using dynamic systems theory to understand “Stress and coping” and “Trauma and resilience. Journal of Human Behavior in the Social Environment, 20(8), 1038–1060. doi:10.1080/10911359.2010.494947
  • Keenan, E. K. (2011). From bumps in the road to the edge of chaos: The nature of change in adults. Journal of Social Work, 11(3), 306–325.
  • Khillan, R., Gitlin, L. N., & Maslow, K. (2018). National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. Report to the National Advisory Council on Alzheimer’s Research, Care, and Services. Retrieved from https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers.
  • Kielhofner, G. (2008). Model of human occupation. Theory and application (4th ed.). Baltimore, MD: Wolters Kluwer Health, Lippincott Williams & Wilkins.
  • Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.
  • Kolanowski, A. M., Fick, D. M., Clare, L., Therrien, B., & Gill, D. J. (2010). An intervention for delirium superimposed on dementia based on cognitive reserve theory. Aging & Mental Health, 14(2), 232–242. doi:10.1080/13607860903167853
  • Kolanowski, A. M., Litaker, M., & Buettner, L. (2005). Efficacy of theory-based activities for behavioral symptoms of dementia. Nursing Research, 54(4), 219–228. doi:10.1097/00006199-200507000-00003
  • Langdon, S. A., Eagle, A., & Warner, J. (2007). Making sense of dementia in the social world: A qualitative study. Social Science & Medicine, 64(4), 989–1000. doi:10.1016/j.socscimed.2006.10.029
  • Lawrence, V., Samsi, K., Banerjee, S., Morgan, C., & Murray, J. (2011). Threat to valued elements of life: The experience of dementia across three ethnic groups. The Gerontologist, 51(1), 39–50. doi:10.1093/geront/gnq073
  • Layder, D. (1998). Sociological practice: Linking theory and social research. London: Sage.
  • Lieblich, A., Tuval-Mashiach, R., & Zilber, T. (1998). Narrative research: Reading, analysis and interpretation. London: SAGE Publications.
  • Lincoln, Y. S., Lynham, S. A., & Guba, E. G. (2011). Paradigmatic controversies, contradictions, and emerging confluences, Revisited. In N. K. Denzin & Y. S. Lincoln (Eds.), The SAGE handbook of qualitative research (4th ed., pp. 97–128). Thousand Oaks: .Sage
  • Manthorpe, J., & Iliffe, S. (2016). The dialectics of dementia. Retrieved from http://www.kcl.ac.uk/sspp/policy-institute/scwru/news/2016/december.aspx#dec2.
  • National Institute for Health and Care Excellence (NICE). (2018). Dementia: Assessment, management and support for people living with dementia and their carers. Retrieved from https://www.nice.org.uk/guidance/ng97.
  • Oliver, K., & Guss, R. (2019). The Experience of dementia. In T. Kitwood (D. Brooker Ed.), Dementia reconsidered, revised: The person still comes first (pp.97–103). London: Open University Press.
  • Patton, M. (2002). Qualitative evaluation and research methods. Thousand Oaks, CA: Sage.
  • Pawson, R. (2006). Evidence-based policy: A realist perspective. London: SAGE Publications.
  • Pawson, R., & Tilley, N. (1997). Realistic evaluation. London: SAGE Publications.
  • Polkinghorne, D. E. (1995). Narrative configuration in qualitative analysis. In J. A. Hatch & R. Wisniewski (Eds.), Life history and narrative (pp. 5–23). London: Routledge.
  • Preston, L., Marshall, A., & Bucks, R. S. (2007). Investigating the ways that older people cope with dementia: A qualitative study. Aging & Mental Health, 11(2), 131–143. doi:10.1080/13607860600844572
  • Rabins, P. V., Kasper, J. D., Kleinman, L., Black, B. S., & Patrick, D. L. (1999). Concepts and methods in the development of the ADRQL: An instrument for assessing health-related quality of life in persons with Alzheimer's disease. Journal of Mental Health and Aging, 5(1), 33–48.
  • Riley, R. J., Burgener, S., & Buckwalter, K. C. (2014). Anxiety and stigma in dementia: A threat to aging in place. The Nursing Clinics of North America, 49(2), 213–231. doi:10.1016/j.cnur.2014.02.008
  • Ritchie, J., & Lewis, J. (2003). Qualitative research practice: A guide for social science students and researchers. London: Sage Publications.
  • Ritchie, J., & Spencer, L. (2002). Qualitative data analysis for applied policy research. In A. Bryman & R. G. Burgess (Eds.), Analysing qualitative data (pp.173–194). London: Routledge.
  • Roy, C., & Andrews, H. A. (1999). The roy adaptation model (2nd ed.). Stamford, CT: Appleton & Lange.
  • Sabat, S. R. (2001). The experience of Alzheimer’s disease: Life through a tangled veil. Oxford: Blackwell.
  • Sabat, S. R. (2018). Alzheimer’s disease & dementia: What everyone needs to know. New York, NY: Oxford University Press.
  • Sabat, S. R. (2019). How personhood is undermined. In T. Kitwood (D. Brooker Ed.), Dementia reconsidered, revised. The person still comes first (pp.59–63). London: Open University Press.
  • Sabat, S. R., & Harré, R. (1992). The construction and deconstruction of self in Alzheimer's disease. Ageing and Society, 12(4), 443–461.
  • Scales, K., Zimmerman, S., & Miller, S. J. (2018). Evidence-based nonpharmacological practices to address behavioral and psychological symptoms of dementia. The Gerontologist, 58(suppl_1), S88–S102. doi:10.1093/geront/gnx167
  • Scottish Government. (2000). Adults with Incapacity (Scotland) Act 2000. Edinburgh: The Stationary Office.
  • Schroots, J. J. (1995). Gerodynamics: Toward a branching theory of aging. Canadian Journal on Aging / La Revue Canadienne du Vieillissement, 14(1), 74–81. doi:10.1017/S0714980800010515
  • Sobral, M., Pestana, M. H., & Paúl, C. (2015). The impact of cognitive reserve on neuropsychological and functional abilities in Alzheimer’s disease patients. Psychology & Neuroscience, 8(1), 39. doi:10.1037/h0101022
  • Spector, A., & Orrell, M. (2010). Using a biopsychosocial model of dementia as a tool to guide clinical practice. International Psychogeriatrics, 2(6), 957–965. doi:10.1017/S1041610210000840
  • Stanley, L. (2008). Madness to the method? Using a narrative methodology to analyse large-scale complex social phenomena. Qualitative Research, 8(3), 435–447. doi:10.1177/1468794106093639
  • Swaffer, K. (2014). Dementia: Stigma, language, and dementia-friendly. Dementia, 13(6), 709–716. doi:10.1177/1471301214548143
  • Swaffer, K. (2016). What the hell happened to my brain?: living beyond dementia. London: Jessica Kingsley. doi:10.1177/1471301218760120
  • Szanton, S. L., Gill, J. M., & Thorpe, R. (2010). The society-to-cells model of resilience in older adults. Annual Review of Gerontology and Geriatrics, 30(1), 5–34.
  • Taylor, R. (2006). Alzheimer’s from the inside out. Baltimore, MD: Health Professions Press.
  • Thelen, E. (2005). Dynamic systems theory and the complexity of change. Psychoanalytic Dialogues, 5(2), 255–283. doi:10.1080/10481881509348831
  • Townsend, E. A., & Polatajko, H. J. (2013). Enabling occupation II: Advancing an occupational therapy vision for health, well-being, & justice through occupation (2nd ed.). Ottawa: Canadian Association of Occupational Therapists.
  • Trigg, R., Jones, R. W., & Skevington, S. M. (2007). Can people with mild to moderate dementia provide reliable answers about their quality of life? Age and Ageing, 36(6), 663–669. doi:10.1093/ageing/afm077
  • UK Government. (2005). Mental capacity Act 2005. London: The Stationary Office.
  • Valenzuela, M. J., & Sachdev, P. (2006). Brain reserve and dementia: A systematic review. Psychological Medicine, 36(4), 441–454. doi:10.1017/S0033291705006264
  • Valenzuela, M., & Sachdev, P. (2009). Can cognitive exercise prevent the onset of dementia? Systematic review of randomized clinical trials with longitudinal follow-up. The American Journal of Geriatric Psychiatry, 17(3), 179–187. doi:10.1097/JGP.0b013e3181953b57
  • Vance, D. E., Roberson, A. J., McGuinness, T. M., & Fazeli, P. L. (2010). How neuroplasticity and cognitive reserve protect cognitive functioning. Journal of Psychosocial Nursing and Mental Health Services, 48(4), 23–30. doi:10.3928/02793695-20100302-01
  • World Health Organization (WHO). (2001). International Classification of Functioning, Disability and Health: ICF. Geneva: .WHO.
  • World Health Organization (WHO). (2017). Draft global action plan on the public health response to dementia. Geneva: .WHO.
  • Zeilig, H. (2013). Dementia as a cultural metaphor. The Gerontologist, 54(2), 258–267. doi:10.1093/geront/gns203
  • Zwijsen, S. A., Van der Ploeg, E., & Hertogh, C. M. (2016). Understanding the world of dementia. How do people with dementia experience the world? International Psychogeriatrics, 28(7), 1067–1107. doi:10.1017/S1041610216000351