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Social participation perspectives of people with cognitive problems and their care-givers: a descriptive qualitative study

Published online by Cambridge University Press:  04 March 2018

HANNEKE DONKERS ,
MYRRA VERNOOIJ-DASSEN ,
DINJA VAN DER VEEN ,
MARIA NIJHUIS VAN DER SANDEN  and
MAUD GRAFF
HANNEKE DONKERS*
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Radboud Alzheimer Center, Nijmegen, The Netherlands.
MYRRA VERNOOIJ-DASSEN
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Radboud Alzheimer Center, Nijmegen, The Netherlands.
DINJA VAN DER VEEN
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Radboud Alzheimer Center, Nijmegen, The Netherlands.
MARIA NIJHUIS VAN DER SANDEN
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Rehabilitation, Nijmegen, The Netherlands.
MAUD GRAFF
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Radboud Alzheimer Center, Nijmegen, The Netherlands. Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Rehabilitation, Nijmegen, The Netherlands.
*
Address for correspondence: Hanneke Donkers, Radboud University Medical Center, 114 IQ Healthcare, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands E-mail: [email protected]
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Abstract

The aim of this study is to explore how community-dwelling older people with cognitive problems and their care-givers (dyads) perceive their own social participation, how care-givers evaluate the social participation of the people they care for and what factors they perceive as influential. In this qualitative study, we performed 13 semi-structured, in-depth interviews with dyads who participated in the Social Fitness Programme. We used content analysis to analyse the interviews thematically. Social participation perceptions include changes over time and a discrepancy in perspectives. All the people with cognitive problems and most care-givers perceived a decreased social participation. Most people with cognitive problems answered that they were satisfied, in contrast to most care-givers who were dissatisfied with the decreased social participation of the people they cared for. Analysing the influencing factors resulted in five themes: behavioural, physical, social environmental, physical environmental and activity-related. People with cognitive problems and their care-givers displayed a discrepancy in social participation perspectives. This becomes a major dilemma, especially for younger care-givers. A key element is a sometimes deliberate choice of people with cognitive problems to refrain from social participation to protect themselves from the consequences of cognitive problems and from encounters with others. This highlights the dynamics of social participation as an interaction between personal factors and the social and physical environment in which social participation occurs.

Keywords

social participationsocial healthcognitive functioningcare-givingquality of life
Type
Article
Information
Ageing & Society , Volume 39 , Issue 7 , July 2019 , pp. 1485 - 1511
Copyright
Copyright © Cambridge University Press 2018 

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References

Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S. and Lachs, M. S. 2014. Caregiver burden: a clinical review. JAMA: The Journal of the American Medical Association, 311, 10, 1052–60.Google Scholar
Barberger-Gateau, P., Fabrigoule, C., Amieva, H., Helmer, C. and Dartigues, J. F. 2002. The disablement process: a conceptual framework for dementia-associated disability. Dementia and Geriatric Cognitive Disorders, 13, 2, 60–6.Google Scholar
Bediou, B., Ryff, I., Mercier, B., Milliery, M., Henaff, M. A., D'Amato, T., Bonnefoy, M., Vighetto, A. and Krolak-Salmon, P. 2009. Impaired social cognition in mild Alzheimer disease. Journal of Geriatric Psychiatry and Neurology, 22, 2, 130–40.Google Scholar
Berkman, L. F. 1995. The role of social relations in health promotion. Psychosomatic Medicine, 57, 3, 245–54.Google Scholar
Berkman, L. F., Glass, T., Brissette, I. and Seeman, T. E. 2000. From social integration to health: Durkheim in the new millennium. Social Science and Medicine, 51, 6, 843–57.Google Scholar
Cohen-Mansfield, J. and Perach, R. 2015. Interventions for alleviating loneliness among older persons: a critical review. American Journal of Health Promotion, 29, 3, e109–25.Google Scholar
Craig, P. and Petticrew, M. 2013. Developing and evaluating complex interventions: reflections on the 2008 MRC guidance. International Journal of Nursing Studies, 50, 5, 585–7.Google Scholar
Crowe, M., Andel, R., Pedersen, N. L., Johansson, B. and Gatz, M. 2003. Does participation in leisure activities lead to reduced risk of Alzheimer's disease? A prospective study of Swedish twins. Journals of Gerontology: Psychological Sciences and Social Sciences, 58B, 5, P249–55.Google Scholar
Desrosiers, J., Robichaud, L., Demers, L., Gelinas, I., Noreau, L. and Durand, D. 2009. Comparison and correlates of participation in older adults without disabilities. Archives of Gerontology and Geriatrics, 49, 3, 397–403.Google Scholar
Donkers, H. W., van der Veen, D. J., Vernooij-Dassen, M. J., Nijhuis-van der Sanden, M. W. and Graff, M. J. 2017. Social participation of people with cognitive problems and their caregivers: a feasibility evaluation of the Social Fitness Programme. International Journal of Geriatric Psychiatry, 32, 12, e50–e63.Google Scholar
Droes, R. M., Chattat, R., Diaz, A., Gove, D., Graff, M., Murphy, K., Verbeek, H., Vernooij-Dassen, M., Clare, L., Johannessen, A., Roes, M., Verhey, F., Charras, K. and The Interdem Social Health Taskforce 2016. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging and Mental Health, 21, 1, 4–17.Google Scholar
Dubois, B., Feldman, H. H., Jacova, C., Cummings, J. L., Dekosky, S. T., Barberger-Gateau, P., Delacourte, A., Frisoni, G., Fox, N. C., Galasko, D., Gauthier, S., Hampel, H., Jicha, G. A., Meguro, K., O'Brien, J., Pasquier, F., Robert, P., Rossor, M., Salloway, S., Sarazin, M., de Souza, L. C., Stern, Y., Visser, P. J. and Scheltens, P. 2010. Revising the definition of Alzheimer's disease: a new lexicon. The Lancet Neurology, 9, 11, 1118–27.Google Scholar
Festinger, L. 1962. Cognitive dissonance. Scientific American, 207, 93–102.Google Scholar
Glei, D. A., Landau, D. A., Goldman, N., Chuang, Y. L., Rodriguez, G. and Weinstein, M. 2005. Participating in social activities helps preserve cognitive function: an analysis of a longitudinal, population-based study of the elderly. International Journal of Epidemiology, 34, 4, 864–71.Google Scholar
Goll, J. C., Charlesworth, G., Scior, K. and Stott, J. 2015. Barriers to social participation among lonely older adults: the influence of social fears and identity. PLOS One, 10, 2, e0116664.Google Scholar
Gordon, J. S. and Bickenbach, J. 2013. Social participation is an important basic right: it demands from all members of society adequate action. Introduction. Journal of Law, Medicine and Ethics, 41, 4, 752–3.Google Scholar
Graneheim, U. H. and Lundman, B. 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educcation Today, 24, 2, 105–12.Google Scholar
Guse, L. W. and Masesar, M. A. 1999. Quality of life and successful aging in long-term care: perceptions of residents. Issues in Mental Health Nursing, 20, 6, 527–39.Google Scholar
Henry, J. D., von Hippel, W., Thompson, C., Pulford, P., Sachdev, P. and Brodaty, H. 2012. Social behavior in mild cognitive impairment and early dementia. Journal of Clinical and Experimental Neuropsychology, 34, 8, 806–13.Google Scholar
Holmen, K., Ericsson, K. and Winblad, B. 2000. Social and emotional loneliness among non-demented and demented elderly people. Archives of Gerontology and Geriatrics, 31, 3, 177–192.Google Scholar
Huber, M., Knottnerus, J. A., Green, L., van der Horst, H., Jadad, A. R., Kromhout, D., Leonard, B., Lorig, K., Loureiro, M. I., van der Meer, J. W., Schnabel, P., Smith, R., van Weel, C. and Smid, H. 2011. How should we define health? BMJ, 343, d4163.Google Scholar
Johnson, J. K., Barach, P., Vernooij-Dassen, M. and Collaborative, H. R. 2012. Conducting a multicentre and multinational qualitative study on patient transitions. BMJ Quality and Safety, 21, supplement 1, i22–8.Google Scholar
Kanamori, S., Kai, Y., Aida, J., Kondo, K., Kawachi, I., Hirai, H., Shirai, K., Ishikawa, Y. and Suzuki, K. 2014. Social participation and the prevention of functional disability in older Japanese: the JAGES cohort study. PLOS One, 9, 6, e99638.Google Scholar
Keating, N. and Gaudet, N. 2012. Quality of life of persons with dementia. Journal of Nutrition, Health and Aging, 16, 5, 454–6.Google Scholar
Krug, E. G. 2002. World Report on Violence and Health. World Health Organization, Geneva.Google Scholar
Law, M. 2002. Participation in the occupations of everyday life. American Journal of Occupational Therapy, 56, 6, 640–9.Google Scholar
Law, M., Baptiste, S., McColl, M., Opzoomer, A., Polatajko, H. and Pollock, N. 1990. The Canadian occupational performance measure: an outcome measure for occupational therapy. Canadian Journal of Occupational Therapy, 57, 2, 82–7.Google Scholar
Leung, P., Orrell, M. and Orgeta, V. 2015. Social support group interventions in people with dementia and mild cognitive impairment: a systematic review of the literature. International Journal of Geriatric Psychiatry, 30, 1, 1–9.Google Scholar
Levasseur, M., Richard, L., Gauvin, L. and Raymond, E. 2010. Inventory and analysis of definitions of social participation found in the aging literature: proposed taxonomy of social activities. Social Science and Medicine, 71, 12, 2141–9.Google Scholar
Lloyd, L. I. Z., Calnan, M., Cameron, A., Seymour, J. and Smith, R. 2012. Identity in the fourth age: perseverance, adaptation and maintaining dignity. Ageing & Society, 34, 1, 1–19.Google Scholar
Lyons, K. S., Zarit, S. H., Sayer, A. G. and Whitlatch, C. J. 2002. Caregiving as a dyadic process: perspectives from caregiver and receiver. Journals of Gerontology: Psychological Sciences and Social Sciences, 57B, 3, P195–204.Google Scholar
Malinowsky, C., Almkvist, O., Nygard, L. and Kottorp, A. 2012. Individual variability and environmental characteristics influence older adults’ abilities to manage everyday technology. International Psychogeriatrics, 24, 3, 484–95.Google Scholar
Minagawa, Y. and Saito, Y. 2014. Active social participation and mortality risk among older people in Japan: results from a nationally representative sample. Research on Aging, 37, 5, 481–99.Google Scholar
Moll, S. E., Gewurtz, R. E., Krupa, T. M., Law, M. C., Lariviere, N. and Levasseur, M. 2015. ‘Do-Live-Well’: a Canadian framework for promoting occupation, health, and well-being. Canadian Journal of Occupational Therapy, 82, 1, 9–23.Google Scholar
Moniz-Cook, E., Vernooij-Dassen, M., Woods, B. and Orrell, M. 2011. Psychosocial interventions in dementia care research: the INTERDEM manifesto. Aging and Mental Health, 15, 3, 283–90.Google Scholar
Moyle, W., Venturto, L., Griffiths, S., Grimbeek, P., McAllister, M., Oxlade, D. and Murfield, J. 2011. Factors influencing quality of life for people with dementia: a qualitative perspective. Aging and Mental Health, 15, 8, 970–7.Google Scholar
Muo, R., Schindler, A., Vernero, I., Schindler, O., Ferrario, E. and Frisoni, G. B. 2005. Alzheimer's disease-associated disability: an ICF approach. Disability and Rehabilitation, 27, 23, 1405–13.Google Scholar
Neff, K. D. and Vonk, R. 2009. Self-compassion versus global self-esteem: two different ways of relating to oneself. Journal of Personality, 77, 1, 23–50.Google Scholar
Park, K. and Lee, Y. 2007. Association of social support and social activity with physical functioning in older persons. Journal of Preventive Medicine and Public Health, 40, 2, 137–44.Google Scholar
Pirhonen, J., Ojala, H., Lumme-Sandt, K. and Pietilä, I. 2015. ‘Old but not that old’: Finnish community-dwelling people aged 90+ negotiating their autonomy. Ageing & Society, 36, 8, 1625–44.Google Scholar
Piskur, B., Daniels, R., Jongmans, M. J., Ketelaar, M., Smeets, R. J., Norton, M. and Beurskens, A. J. 2014. Participation and social participation: are they distinct concepts? Clinical Rehabilitation, 28, 3, 211–20.Google Scholar
Pitkala, K. H., Raivio, M. M., Laakkonen, M. L., Tilvis, R. S., Kautiainen, H. and Strandberg, T. E. 2010. Exercise rehabilitation on home-dwelling patients with Alzheimer's disease – a randomized, controlled trial. Study protocol. Trials, 11, 1, 92–9.Google Scholar
Rocha, V., Marques, A., Pinto, M., Sousa, L. and Figueiredo, D. 2013. People with dementia in long-term care facilities: an exploratory study of their activities and participation. Disability and Rehabilitation, 35, 18, 1501–8.Google Scholar
Rokach, A. 2012. Loneliness updated: an introduction. Journal of Psychology, 146, 1/2, 1–6.Google Scholar
Samuelsson, A. M., Annerstedt, L., Elmstahl, S., Samuelsson, S. M. and Grafstrom, M. 2001. Burden of responsibility experienced by family caregivers of elderly dementia sufferers – analyses of strain, feelings and coping strategies. Scandinavian Journal of Caring Sciences, 15, 1, 25–33.Google Scholar
Satink, T., Josephsson, S., Zajec, J., Cup, E. H., de Swart, B. J. and Nijhuis-van der Sanden, M. W. 2016. Self-management develops through doing of everyday activities – a longitudinal qualitative study of stroke survivors during two years post-stroke. BMC Neurolology, 16, 1, 1–234.Google Scholar
Schoenmakers, E. C., van Tilburg, T. G. and Fokkema, T. 2012. Coping with loneliness: what do older adults suggest? Aging and Mental Health, 16, 3, 353–60.Google Scholar
Silva, F. C., Sampaio, R. F., Ferreira, F. R., Camargos, V. P. and Neves, J. A. 2013. Influence of context in social participation of people with disabilities in Brazil. Pan American Journal of Public Health, 34, 4, 250–6.Google Scholar
Soderhamn, U., Landmark, B., Eriksen, S. and Soderhamn, O. 2013. Participation in physical and social activities among home-dwelling persons with dementia – experiences of next of kin. Psychology Research and Behavior Management, 6, 29–36.Google Scholar
Sorensen, L. V., Waldorff, F. B. and Waldemar, G. 2008. Social participation in home-living patients with mild Alzheimer's disease. Archives of Gerontology and Geriatrics, 47, 3, 291–301.Google Scholar
Teri, L., Gibbons, L. E., McCurry, S. M., Logsdon, R. G., Buchner, D. M., Barlow, W. E., Kukull, W. A., LaCroix, A. Z., McCormick, W. and Larson, E. B. 2003. Exercise plus behavioral management in patients with Alzheimer disease: a randomized controlled trial. JAMA: The Journal of the American Medical Association, 290, 15, 2015–22.Google Scholar
Tong, A., Sainsbury, P. and Craig, J. 2007. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality of Health Care, 19, 6, 349–57.Google Scholar
Turcotte, P. L., Lariviere, N., Desrosiers, J., Voyer, P., Champoux, N., Carbonneau, H., Carrier, A. and Levasseur, M. 2015. Participation needs of older adults having disabilities and receiving home care: met needs mainly concern daily activities, while unmet needs mostly involve social activities. BMC Geriatrics, 15, 95.Google Scholar
Unger, J. B., Johnson, C. A. and Marks, G. 1997. Functional decline in the elderly: evidence for direct and stress-buffering protective effects of social interactions and physical activity. Annals of Behavioral Medicine, 19, 2, 152–60.Google Scholar
van der Roest, H. G., Meiland, F. J., Comijs, H. C., Derksen, E., Jansen, A. P., van Hout, H. P., Jonker, C. and Droes, R. M. 2009. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21, 5, 949–65.Google Scholar
Van Mierlo, L. D., Van der Roest, H. G., Meiland, F. J. and Droes, R. M. 2010. Personalized dementia care: proven effectiveness of psychosocial interventions in subgroups. Ageing Research Reviews, 9, 2, 163–83.Google Scholar
Vasse, E., Moniz-Cook, E., Rikkert, M. O., Cantegreil, I., Charras, K., Dorenlot, P., Fumero, G., Franco, M., Woods, B. and Vernooij-Dassen, M. 2012. The development of quality indicators to improve psychosocial care in dementia. International Psychogeriatrics, 24, 6, 921–30.Google Scholar
Vernooij-Dassen, M. and Jeon, Y. H. 2016. Social health and dementia: the power of human capabilities. International Psychogeriatrics, 28, 5, 701–3.Google Scholar
Vernooij-Dassen, M., Leatherman, S. and Olde-Rikkert, M. 2011. Quality of care in frail older people: the fragile balance between receiving and giving. BMJ, 342, d403.Google Scholar
Vertesi, A., Lever, J. A., Molloy, D. W., Sanderson, B., Tuttle, I., Pokoradi, L. and Principi, E. 2001. Standardized Mini-Mental State Examination. Use and interpretation. Canadian Family Physician, 47, 2018–23.Google Scholar
Whiteneck, G. G., Harrison-Felix, C. L., Mellick, D. C., Brooks, C. A., Charlifue, S. B. and Gerhart, K. A. 2004. Quantifying environmental factors: a measure of physical, attitudinal, service, productivity, and policy barriers. Archives of Physical Medicine and Rehabilitation, 85, 8, 1324–35.Google Scholar
Wilson, R. S., Krueger, K. R., Arnold, S. E., Schneider, J. A., Kelly, J. F., Barnes, L. L., Tang, Y. and Bennett, D. A. 2007. Loneliness and risk of Alzheimer disease. Archives of General Psychiatry, 64, 2, 234–40.Google Scholar
Zunzunegui, M. V., Alvarado, B. E., Del Ser, T. and Otero, A. 2003. Social networks, social integration, and social engagement determine cognitive decline in community-dwelling Spanish older adults. Journals of Gerontology: Psychological Sciences and Social Sciences, 58B, 2, S93–100.Google Scholar