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A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members

Published online by Cambridge University Press:  13 June 2017

Alieske E.H. Dam
Affiliation:
Department of Psychiatry and Neuropsychology/Alzheimer Centre Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands
Lizzy M.M. Boots
Affiliation:
Department of Psychiatry and Neuropsychology/Alzheimer Centre Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands
Martin P.J. van Boxtel
Affiliation:
Department of Psychiatry and Neuropsychology/Alzheimer Centre Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands
Frans R.J. Verhey
Affiliation:
Department of Psychiatry and Neuropsychology/Alzheimer Centre Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands
Marjolein E. de Vugt
Affiliation:
Department of Psychiatry and Neuropsychology/Alzheimer Centre Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands
Corresponding

Abstract

Background:

Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks.

Methods:

Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes.

Results:

Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance.

Discussion:

Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.

Type
Research Article
Copyright
Copyright © International Psychogeriatric Association 2017 

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References

Aneshensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H. and Whitlatch, C. J. (1995). Profiles in Caregiving: The Unexpected Career. San Diego, CA: Academic Press.Google Scholar
Au, A. et al. (2009). Social support and well-being in dementia family caregivers: the mediating role of self-efficacy. Aging & Mental Health, 13, 761768.CrossRefGoogle ScholarPubMed
Baars, H. M. J., Uffing, J. T. F. and Dekkers, G. F. H. M. (1990). Sociale netwerkstrategieën in de sociale psychiatrie. [Social Network Strategies in social psychiatry]. Houten/Antwerpen: Bohn Stafeu van Loghum.Google Scholar
Baldwin, M. W. (1992). Relational schemas and the processing of social information. Psychological Bulletin, 112, 461.CrossRefGoogle Scholar
Beck, A. T. (1976). Cognitive Therapy and the Emotional Disorders. New York: International Universities Press.Google Scholar
Beeson, R. A. (2003). Loneliness and depression in spousal caregivers of those with Alzheimer's disease versus non-caregiving spouses. Archives of Psychiatric Nursing, 17, 135143.CrossRefGoogle ScholarPubMed
Boeije, H. (2005). Analyseren in Kwalitatief Onderzoek: Denken en Doen. [Analysis of qualitative research: thinking and doing]. Amsterdam: Boom Onderwijs.Google Scholar
Boots, L. M., de Vugt, M. E., van Knippenberg, R. J., Kempen, G. I. and Verhey, F. R. (2014). A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. International Journal of Geriatric Psychiatry, 29, 331344. doi: 10.1002/gps.4016.CrossRefGoogle ScholarPubMed
Boots, L. M., Wolfs, C. A., Verhey, F. R., Kempen, G. I. and de Vugt, M. E. (2015). Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help. International Psychogeriatrics, 27, 927936.CrossRefGoogle ScholarPubMed
Brodaty, H., Thomson, C., Thompson, C. and Fine, M. (2005). Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry, 20, 537546. doi: 10.1002/gps.1322.CrossRefGoogle ScholarPubMed
Brown, J. W., Chen, S. l., Mitchell, C. and Province, A. (2007). Help-seeking by older husbands caring for wives with dementia. Journal of Advanced Nursing, 59, 352360.CrossRefGoogle ScholarPubMed
Clement, S. et al. (2015). What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychological Medicine, 45, 1127. doi: 10.1017/s0033291714000129.CrossRefGoogle ScholarPubMed
Coriell, M. and Cohen, S. (1995). Concordance in the face of a stressful event: when do members of a dyad agree that one person supported the other? Journal of Personality and Social Psychology, 69, 289.CrossRefGoogle ScholarPubMed
Dam, A. E. H., de Vugt, M. E., Klinkenberg, I. P. M., Verhey, F. R. J. and van Boxtel, M. P. J. (2016). A systematic review of social support interventions for caregivers of people with dementia: are they doing what they promise? Maturitas, 85, 117130. doi: http://dx.doi.org/10.1016/j.maturitas.2015.12.008.CrossRefGoogle ScholarPubMed
Dröes, R.M. (1991). In Beweging; over psychosociale hulpverlening aan demente ouderen [In movement: about psychosocial care for elderly with dementia]. Utrecht: De Tijdstroom.Google Scholar
Dröes, R. M. et al. (2016). Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging & Mental Health, 114. doi: 10.1080/13607863.2016.1254596.Google ScholarPubMed
Elo, S. and Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62, 107115.CrossRefGoogle ScholarPubMed
Evers, J. (2015). Kwalitatief Analyse: Kunst én Kunde [Qualitative Analysis: Art and Science]. Den Haag: LEMMA.Google Scholar
Finnema, E., Dröes, R.-M., Ribbe, M. and Van Tilburg, W. (2000). A review of psychosocial models in psychogeriatrics: implications for care and research. Alzheimer Disease & Associated Disorders, 14, 6880.CrossRefGoogle ScholarPubMed
Fortinsky, R. H. and Downs, M. (2014). Optimizing person-centered transitions in the dementia journey: a comparison of national dementia strategies. Health Affairs, 33, 566573.CrossRefGoogle ScholarPubMed
Greenwood, N. and Smith, R. (2015). Barriers and facilitators for male carers in accessing formal and informal support: a systematic review. Maturitas, 82, 162169. doi: 10.1016/j.maturitas.2015.07.013.CrossRefGoogle ScholarPubMed
Huber, M. et al. (2011). How should we define health? Bmj, 343, d4163.CrossRefGoogle ScholarPubMed
Koehly, L. M., Ashida, S., Schafer, E. J. and Ludden, A. (2015). Caregiving networks-using a network approach to identify missed opportunities. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 70, 143154.CrossRefGoogle ScholarPubMed
Lazarus, R. S. and Folkman, S. (1984). Stress, Appraisal, and Coping. New York: Springer.Google Scholar
Lou, V. W., Kwan, C. W., Chong, M. L. A. and Chi, I. (2013). Associations between secondary caregivers’ supportive behavior and psychological distress of primary spousal caregivers of cognitively intact and impaired elders. The Gerontologist, 55, 584594.CrossRefGoogle ScholarPubMed
Mackenzie, J. (2006). Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK. Dementia: The International Journal of Social Research and Practice, 5, 233247. doi: 10.1177/1471301206062252.CrossRefGoogle Scholar
Miller, B. and Guo, S. (2000). Social support for spouse caregivers of persons with dementia. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 55, S163S172.CrossRefGoogle ScholarPubMed
Mittelman, M. S., Haley, W. E., Clay, O. J. and Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, 67, 15921599.CrossRefGoogle ScholarPubMed
Pollitt, P., Andersont, I. and O'Connor, D. (1991). For better or for worse: the experience of caring for an elderly dementing spouse. Ageing and Society, 11, 443469.CrossRefGoogle Scholar
Preston, C. C. and Colman, A. M. (2000). Optimal number of response categories in rating scales: reliability, validity, discriminating power, and respondent preferences. Acta psychologica, 104, 115.CrossRefGoogle ScholarPubMed
Roland, K. P. and Chappell, N. L. (2015). Meaningful activity for persons with dementia: family caregiver perspectives. American Journal of Alzheimers Disease and Other Dementias, 30, 559568. doi: 10.1177/1533317515576389.CrossRefGoogle ScholarPubMed
Schulz, R. and Martire, L. M. (2004). Family caregiving of persons with dementia: prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12, 240249.CrossRefGoogle ScholarPubMed
Simpson, J. A., Rholes, W. S., Oriña, M. M. and Grich, J. (2002). Working models of attachment, support giving, and support seeking in a stressful situation. Personality and Social Psychology Bulletin, 28, 598608.CrossRefGoogle Scholar
Smyth, K. A. and Milidonis, M. K. (1999). The relationship between normative beliefs about help seeking and the experience of caregiving in Alzheimer's disease. Journal of Applied Gerontology, 18, 222238.CrossRefGoogle Scholar
Thoits, P. A. (2011). Mechanisms linking social ties and support to physical and mental health. Journal of Health and Social Behavior, 52, 145161.CrossRefGoogle ScholarPubMed
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 in Health Care, 19, 349357.CrossRefGoogle ScholarPubMed
Valle, R., Yamada, A. M. and Barrio, C. (2004). Ethnic differences in social network help-seeking strategies among Latino and Euro-Aamerican dementia caregivers. Aging & Mental Health, 8, 535543. doi: 10.1080/13607860410001725045.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M. and Jeon, Y. H. (2016). Social health and dementia: the power of human capabilities. International Psychogeriatrics, 28, 701703. doi: 10.1017/s1041610216000260.CrossRefGoogle ScholarPubMed
Wolfs, C. A., de Vugt, M. E., Verkaaik, M., Verkade, P. J. and Verhey, F. R. (2010). Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments. International Journal of Geriatric Psychiatry, 25, 10061012.CrossRefGoogle ScholarPubMed
Wolverson, E., Clarke, C. and Moniz-Cook, E. (2016). Living positively with dementia: a systematic review and synthesis of the qualitative literature. Aging & Mental Health, 20, 676699.CrossRefGoogle ScholarPubMed
Zwaanswijk, M., Peeters, J. M., van Beek, A. P., Meerveld, J. H. and Francke, A. L. (2013). Informal caregivers of people with dementia: problems, needs and support in the initial stage and in subsequent stages of dementia: a questionnaire survey. Open Nursing Journal, 7, 613. doi: 10.2174/1874434601307010006.CrossRefGoogle ScholarPubMed
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