Hostname: page-component-586b7cd67f-2brh9 Total loading time: 0 Render date: 2024-11-24T11:18:41.077Z Has data issue: false hasContentIssue false

Family relationships and dementia: a synthesis of qualitative research including the person with dementia

Published online by Cambridge University Press:  19 March 2013

JENNY LA FONTAINE*
Affiliation:
Association for Dementia Studies, University of Worcester, UK. School of Psychology, University of Birmingham, UK.
JAN R. OYEBODE
Affiliation:
Bradford Dementia Group, University of Bradford, UK.
*
Address for correspondence: Jenny La Fontaine, Association for Dementia Studies, University of Worcester, Henwick Grove, Worcester WR2 6AJ, UK. E-mail: [email protected]

Abstract

Family relationships are important for wellbeing across the lifecourse and are known to be important for people living with dementia, bringing benefits to self-esteem and identity, as well as providing support for people living at home. Recent research has explored the impact of dementia upon relationships. Much of this research is qualitative in nature and rarely included in systematic reviews, however, it has the potential to provide significant contributions to understanding the interplay between family relationships and dementia and to inform interventions. A systematic synthesis of qualitative research concerning the impact of dementia upon family relationships was undertaken, using thematic synthesis. Eleven articles were reviewed, which address the perspectives of people living with dementia and their spouse and/or adult children. The aims of this review are to illuminate what is currently known about the reciprocal influences between family relationships and dementia from the perspectives of the family (including the person with dementia); and to consider the implications of these findings for research and practice. Four super-ordinate themes were identified: ‘a shared history’, ‘negotiating the impact of dementia upon the relationship’, ‘openness and awareness’ and ‘shifting sands’. This synthesis contributes to an emerging field but also highlights gaps in current understanding of the impact of dementia upon relationships and in providing appropriate interventions. Implications for research and practice are considered.

Type
Articles
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ablitt, A., Jones, G. and Muers, J. 2009. Living with dementia: a systematic review of the influence of relationship factors. Aging and Mental Health, 13, 4, 497511.Google Scholar
Ablitt, A. J., Jones, G. and Muers, J. 2010. Awareness of carer distress in people with dementia. International Journal of Geriatric Psychiatry, 25, 12, 1246–52.Google Scholar
Allen, J., Oyebode, J. R. and Allen, J. 2009. Having a father with young onset dementia. Dementia, 8, 4, 455–80.Google Scholar
Alzheimer Europe 2006. Dementia CarersSurvey. Available online at http://www.alzheimer-europe.org/Alzheimer-Europe/Our-work/Completed-AE-projects/2006-Dementia-Carers-Survey#fragment-2 [Accessed 9 April 2012].Google Scholar
Braun, V. and Clarke, V. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 2, 77101.Google Scholar
Brodaty, H., Gresham, M. and Luscombe, G. 2007. The Prince Henry Hospital dementia caregivers training programme. Revista Romana de Psihiatrie Seria a, III-a, 9, 2/3, 140–6.Google Scholar
Brooker, D. 2007. Person-centred Dementia Care, Making Services Better. Jessica Kingsley Publishers, London.Google Scholar
Burgener, S. and Twigg, P. 2002. Relationships among caregiver factors and quality of life in care recipients with irreversible dementia. Alzheimer Disease and Associated Disorders, 16, 2, 88102.Google Scholar
Charmaz, K. 2006. Constructing Grounded Theory. A Practical Guide Through Qualitative Analysis. Sage, Thousand Oaks, California.Google Scholar
Clare, L. and Shakespeare, P. 2004. Negotiating the impact of forgetting: dimensions of resistance in task-oriented conversations between people with early-stage dementia and their partners. Dementia, 3, 2, 211–32.Google Scholar
Corbin, J. M. and Strauss, A. C. 2008. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Sage, Thousand Oaks, California.Google Scholar
Daniels, K. J., Lamson, A. L. and Hodgson, J. 2007. An exploration of the marital relationship and Alzheimer's disease: one couple's story. Families, Systems, and Health, 25, 2, 162–77.Google Scholar
Davies, J. C. 2011. Preserving the ‘us identity’ through marriage commitment while living with early-stage dementia. Dementia, 10, 2, 217–34.Google Scholar
Department of Health 2009. Living Well with Dementia, A National Dementia Strategy. Putting People First. Available online at http://www.dh.gov.uk/en/socialcare/deliveringadultsocialcare/olderpeople/nationaldementiastrategy/index.htm [Accessed 19 September 2012].Google Scholar
Dixon-Woods, M., Bonas, S., Booth, A., Jones, D. R., Miller, T., Sutton, A. J., Shaw, R. L., Smith, J. A. and Young, B. 2006. How can systematic reviews incorporate qualitative research? A critical perspective. Qualitative Research, 6, 1, 2744.Google Scholar
Elliott, R., Fischer, C. T. and Rennie, D. L. 1999. Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 3, 215–29.Google Scholar
Elvish, R., Lever, S. J., Johnstone, J., Cawley, R. and Keady, J. 2012. Psychological Interventions for Carers of People with Dementia: A Systematic Review of Quantitative and Qualitative Evidence. British Association for Counselling and Psychotherapy. Available online at http://www.bacp.co.uk/research/Systematic_Reviews_and_Publications/dementia_carers.php [Accessed 12 June 2012].Google Scholar
Fadden, G. and Smith, J. 2009. Family work in early psychosis. In Lobban, F. and Barrowclough, C. (eds), A Casebook of Family Interventions for Psychosis. John Wiley and Sons, Oxford, 2346.Google Scholar
Fisher, L. 2006. Research on the family and chronic disease among adults: major trends and directions. Families, Systems and Health, 24, 4, 373–80.Google Scholar
Forbat, L. 2003. Relationship difficulties in dementia care: a discursive analysis of two women's accounts. Dementia, 2, 1, 6784.Google Scholar
Garwick, A. W., Detzner, D. and Boss, P. 1994. Family perceptions of living with Alzheimer's disease. Family Process, 33, 3, 327–40.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. 2005. ‘We do things together’: a case study of ‘couplehood’ in dementia. Dementia, 4, 1, 722.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. 2007. Sustaining ‘couplehood’: spouses’ strategies for living positively with dementia. Dementia, 6, 3, 383409.CrossRefGoogle Scholar
Heru, A. M. 2006. Family psychiatry: from research to practice. American Journal of Psychiatry, 163, 6, 962–8.Google Scholar
Hodges, J. R. 2008. Overview of frontotemporal dementia. In Hodges, J. R. (ed.), Frontotemporal Dementia Syndromes. Cambridge, Cambridge University Press, 124.Google Scholar
Keady, J. and Nolan, M. 2003. The dynamics of dementia: working together, working separately or working alone? In Nolan, M., Lundh, U., Grant, G. and Keady, J. (eds), Partnerships in Family Care: Understanding the Caregiving Career. Open University Press, Buckingham, UK, 1532.Google Scholar
Kitwood, T. 1997. Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, UK.Google Scholar
Knapp, M. and Prince, M. 2007. Dementia UK: The Full Report. Kings College London, London School of Economics, Alzheimer's Society. Available online at http://www.alzheimers.org.uk/News_and_Campaigns/Campaigning/PDF/Dementia_UK_Full_Report.pdf [Accessed 30 January 2007].Google Scholar
Livingston, G., Cooper, C., Woods, J., Milne, A. and Katona, C. 2008. Successful ageing in adversity: the laser AD longitudinal study. Journal of Neurology, Neurosurgery and Psychiatry, 79, 6, 641–5.CrossRefGoogle ScholarPubMed
Luengo-Fernandez, R., Leal, J. and Gray, A. 2010. Dementia 2010. Alzheimer's Research Trust. Available online at http://www.dementia2010.org/ [Accessed 3 February 2010].Google Scholar
Lyons, R. F., Sullivan, M. J. L., Ritvo, P. G. and Coyne, J. C. 1995. Relationships in Chronic Illness and Disability. Sage, Thousand Oaks, California.Google Scholar
Molyneaux, V. J., Butchard, S., Simpson, J. and Murray, C. 2012. The co-construction of couplehood in dementia. Dementia, 11, 4, 483502.Google Scholar
National Institute of Clinical Excellence and Social Care Institute for Excellence 2006. Supporting People with Dementia and Their Carers in Health and Social Care. National Clinical Practice Guideline No. 42, National Collaborating Centre for Mental Health. Available online at http://www.nice.org.uk/nicemedia/pdf/CG042NICEGuideline.pdf [Accessed 5 December 2006].Google Scholar
Nolan, M. R., Davies, S., Brown, J., Keady, J. and Nolan, J. 2004. Beyond ‘person-centred’ care: a new vision for gerontological nursing. Journal of Clinical Nursing, 13, s1, 4553.Google Scholar
Nolan, M. R., Ryan, T., Enderby, P. and Reid, D. 2002. Towards a more inclusive vision of dementia care practice and research. Dementia, 1, 2, 193211.Google Scholar
Piercy, K. W. 2007. Characteristics of strong commitments to intergenerational family care of older adults. Journals of Gerontology: Social Sciences, 62, 6, s381–7.Google Scholar
Prince, M., Bryce, R. and Ferri, C. 2011. Alzheimer's Disease International World Alzheimer Report: The Benefits of Early Diagnosis and Intervention. Available online at http://www.alz.co.uk/research/world-report [Accessed 16 December 2011].Google Scholar
Purves, B. A. 2011. Exploring positioning in Alzheimer Disease through analyses of family talk. Dementia, 10, 1, 3558.Google Scholar
QSR International 2010. NVivo Qualitative Data Analysis Software. Version 9, QSR International Pty Ltd., Victoria.Google Scholar
Quinn, C., Clare, L. and Woods, B. 2009. The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: a systematic review. Aging and Mental Health, 13, 2, 143–54.Google Scholar
Robinson, L., Clare, L. and Evans, K. 2005. Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging and Mental Health, 9, 4, 337–47.Google Scholar
Rolland, J. S. 1987. Chronic illness and the life cycle: a conceptual framework. Family Process, 26, 2, 203–21.Google Scholar
Sheilds, G. C. 1992. Family interaction and caregivers of Alzheimer's disease patients: correlates of depression. Family Process, 31, 1, 1933.Google Scholar
Spitznagel, M. B., Tremont, G., Davis, J. D. and Foster, S. M. 2006. Psychosocial predictors of dementia caregiver desire to institutionalise: caregiver, care recipient and family relationship factors. Journal of Geriatric Psychiatry and Neurology, 19, 1, 1620.Google Scholar
Svanström, R. and Dahlberg, K. 2004. Living with dementia yields a heteronomous and lost existence. Western Journal of Nursing Research, 26, 6, 671–87.Google Scholar
Thomas, J. and Harden, A. 2008. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8. Available online at http://www.biomedcentral.com/1471-2288/8/45 [Accessed 1 February 2012].Google Scholar
Tolkacheva, N., van Groenou, M. B., de Boer, A. and van Tilburg, T. 2010. The impact of informal care-giving networks on adult children's care-giver burden. Ageing & Society, 31, 1, 3451.Google Scholar
Walsh, F. 1996. The concept of family resilience: crisis and challenge. Family Process, 35, 3, 261–81.Google Scholar
Ward-Griffin, C., Oudshoorn, A., Clark, K. and Bol, N. 2007. Mother–adult daughter relationships within dementia care: a critical analysis. Journal of Family Nursing, 1, 13, 1332.Google Scholar