Hostname: page-component-78c5997874-mlc7c Total loading time: 0 Render date: 2024-11-11T07:03:32.039Z Has data issue: false hasContentIssue false
  • English
  • Français

Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research

Published online by Cambridge University Press:  11 January 2016

Margaret Pozzebon ,
Jacinta Douglas  and
David Ames
Margaret Pozzebon*
Affiliation:
School of Allied Health, La Trobe University, Melbourne, Victoria, Australia Royal Melbourne Hospital, Parkville, Victoria, Australia
Jacinta Douglas
Affiliation:
School of Allied Health, La Trobe University, Melbourne, Victoria, Australia Summer Foundation, Victoria, Australia
David Ames
Affiliation:
Royal Melbourne Hospital, Parkville, Victoria, Australia National Ageing Research Institute and University of Melbourne, Parkville, Victoria, Australia
*
Correspondence should be addressed to: Margaret Pozzebon, Royal Melbourne Hospital, Royal Park Campus, Speech Pathology Department, 34–54 Poplar Road, Parkville 3052, Victoria, Australia. Phone: +61-3-8387-2000; Mobile: +61-417 100 805; Fax: 613-8387-2119. Email: margaret.pozzebon@mh.org.au.
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

The majority of people diagnosed with a dementia live at home with the support of their spouse. While this situation has advantages, it brings many challenges for the spouse, particularly dealing with the emotional impact of the behavioral changes associated with the dementia. A growing body of qualitative research has focused on understanding the spousal caregiver perspective of living with a partner diagnosed with dementia. The aim of this study was to complete a synthesis of the results of published qualitative studies that have explored the spousal experience.

Method:

An electronic database search of Ovid Medline, CINAHL, EMBASE, and PsychINFO from January 1980 to September 2014 was conducted. Sixteen studies met the inclusion criteria. Verbatim quotes of the participant interview data derived from these studies were collated and a thematic analysis was conducted.

Results:

Synthesis of the published data revealed five major themes. The theme of “loss of partner” was central, and around this central experience spouses described various processes: acknowledging change, being in crisis, adapting and adjusting, accepting and moving forward.

Conclusions:

These findings provide insights into the day-to-day adjustments and experiences of spousal caregivers whilst highlighting the importance of considering the impact of cognitive decline and dementia in a social-relational context.

Keywords

dementiaAlzheimer’s diseasefrontotemporal dementiaspousal caregiversadjustmentcommunication skillsqualitative researchsynthesis
Type
Review Article
Information
International Psychogeriatrics , Volume 28 , Issue 4 , April 2016 , pp. 537 - 556
Copyright
Copyright © International Psychogeriatric Association 2016 

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

Australian Institute of Health and Welfare–AIHW (2012). Dementia in Australia. Cat. no. AGE 70. Canberra: AIHW. http://www.aihw.gov.au/publication-detail/?id=10737422958.Google Scholar
Australian Institute of Health and Welfare–AIHW (2014). Australian Health 2014. http://www.aihw.gov.au/publication-detail/?id=60129547205.Google Scholar
Baker, K. L. and Robertson, N. (2008). Coping with caring for someone with dementia: reviewing the literature about men. Aging and Mental Health, 12, 413–422. doi:10.1080/13607860802224250.CrossRefGoogle ScholarPubMed
Barnett-Page, E. and Thomas, J. (2009). Methods for the synthesis of qualitative research: a critical review. BioMed Central (BMC) Medical Research Methodology, 11, 59. doi:10.1186/1471-2288-9-59.Google Scholar
Blieszner, B. and Roberto, K. A. (2009). Care partner responses to the onset of mild cognitive impairment. The Gerontologist, 50, 11–22. doi:10. 1093/geront/gnp068.Google Scholar
Blumer, H. (1969). Symbolic Interactionism: Perspective and Method. Berkeley, CA: University of California Press.Google Scholar
Boylstein, C. and Hayes, J. (2012). Reconstructing marital closeness while caring for a spouse with Alzheimer's. Journal of Family Issues, 33, 584–612. doi: 10.1177/019251×11416449.Google Scholar
Braun, M., Scholz, U., Bailey, B., Hornung, R. and Martin, M. (2009). Dementia caregiving in spousal relationships: a dyadic perspective. Aging and Mental Health, 13, 426–436. doi:10.1080/13607860902879441.Google Scholar
Charmaz, K. (2006). Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. London: Sage.Google Scholar
Clare, L. et al. (2012). Marital relationship quality in early-stage dementia: perspectives from people with dementia and their spouses. Alzheimer Disease and Associated Disorders, 26, 148–158. doi:10.1097/WAD.Ob013e318221ba23.Google Scholar
Cooper, S. and Greene, , J. D. (2005). The clinical assessment of the patient with early dementia. Journal of Neurology, Neurosurgery and Psychiatry, 76 (Suppl. 5), 15–24. doi:10.1136/jnnp.2005.081133.Google Scholar
Critical Appraisal Skills Program (CASP): Making Sense of Evidence (2013). CASP qualitative checklist. http://www.casp-uk.net/#!casp-tools-checklists/c18f8.Google Scholar
Davies, H. D. et al. (2010). The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. International Psychogeriatrics, 22, 618–628. doi:10.1017/S1041610210000177.Google Scholar
Davies, H. D., Sridhar, S.B., Newkirk, L.A., Beaudreau, S.A. and O’Hara, R. (2012). Gender differences in sexual behaviours of AD patients and their relationship to spousal caregiver well-being. Aging and Mental Health, 16, 89–101. doi:10.1080/13607863.2011.609532.Google Scholar
DeCaporale, L., Mensie, L. and Steffen, A. (2013). Respite utilisation and responses to loss among family caregivers: relationship matters. Death Studies, 37, 483–492.Google Scholar
Department of Health and Ageing (DoHA) (2012). Living Longer. Living Better. Aged Care Reform Package. Canberra: DoHA.Google Scholar
de Vugt, M. E. et al. (2003). Behavioural disturbances in dementia patients and quality of the marital relationship. International Journal of Geriatric Psychiatry, 18, 149–154. doi:10.1002/gps.807.Google Scholar
de Vugt, M. E. and Verhey, F. R. J. (2012). The impact of early dementia diagnosis and intervention on informal caregivers. Progress in Neurobiology, 110, 54–62. doi:10.106/j.pneurobio.2013.04.005.Google Scholar
Dixon-Woods, M., Sutton, A., Shaw, R., Miller, T., Smith, J. and Young, B. (2007). Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. Journal of Health Services Research and Policy, 12, 42–47. doi:10.1258/135581907779497486.Google Scholar
Ducharme, F., Kergoat, M. J., Antoine, P., Pasquier, F. and Coulombr, R. (2013). The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease and Other Dementias, 28, 634–641. doi:10.1177/1533317513494443.Google Scholar
Duck, S. (1988). Relating to Others, CA: Dorsey Press.Google Scholar
Eloniemi-Sulkava, U. et al. (2002). Spouse caregivers’ perceptions of influence of dementia on marriage. International Psychogeriatrics, 14, 1, 47–58. doi:10.1017/S104161020200827X.CrossRefGoogle ScholarPubMed
Eustace, A. et al. (2007). Behavioural disturbance triggers recognition of dementia by family informants. International Journal of Geriatric Psychiatry, 22, 6, 574–579. doi:10.1002/gps.1718.Google Scholar
Fauth, E. et al. (2012). Caregivers’ relationship closeness with the person with dementia predicts both postive and negative outcomes for caregivers’ physical health and psychological well-being. Aging and Mential Health, 16, 699–711. doi:10.1080/13607863.2012.678482.CrossRefGoogle Scholar
Frank, L. et al. (2006). Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants. International Psychogeriatrics, 18, 151–162. doi:10.1017/S1041610205002450.Google Scholar
Garand, L., Dew, M. A., Urda, B., Hagerty Lingler, J., DeKosky, S. T. and Reynolds, C. F. (2007). Marital quality in the context of mild cognitive impairment. Western Journal of Nursing Research, 29, 976–992. doi:10.1177/0193945907303086.Google Scholar
Gibbons, C. et al. (2014). The psychological health consequences of caring for a spouse with dementia: a critical comparison of husands and wives. Journal of Women and Aging, 26, 3–12. doi:10.1080/08952841.2014.854571.CrossRefGoogle Scholar
Gilden, D. M., Kubisak, J. M., Kahle-Wrobleski, K., Ball, D. E. and Bowman, L. (2014). Using U.S. medicare records to evaluate the indirect health effects on spouses: a case study in alzheimer's disease patients. BioMed Central Health Services Research, 14, 291–301. doi:10.1186/1472-6963-14-291.Google Scholar
Gillies, B. (2012). Continuity and loss: the carer's journey through dementia. Dementia, 11, 657–676. doi:10.1177/1471301211421262.CrossRefGoogle Scholar
Grbich, C. (2013). Qualitative Data Analysis: An Introduction. London: Sage.CrossRefGoogle Scholar
Gubrium, J. F. (1987). Structuring and destructuring the course of illness: the Alzheimer's disease experience. Sociology of Health and Illness, 9, 1–24.Google Scholar
Harris, S. M., Adams, M.S., Zubatsky, M. and White, M. (2011). A caregiver perspective of how Alzheimer's disease and related disorders affect couple intimacy. Aging and Mental Health, 15, 950–960. doi:10.1080/136078632011583629.Google Scholar
Hayes, J., Boylstein, C. and Zimmerman, M. K. (2009). Living and loving with dementia: negotiating spousal and caregiver identity through narrative. Journal of Aging Studies, 23, 48–59. doi:10.1016/j.jaging.2007.09.002.Google Scholar
Hellstrom, I., Nolan, M. and Lundh, U. (2005). “We do things together”: a case study of “couplehood” in dementia. Dementia, 4, 7–22. doi:10.1177/1471301205049188.CrossRefGoogle Scholar
Hellstrom, I., Nolan, M. and Lundh, U. (2007). Sustaining “couplehood”: spouses’ strategies for living positively with dementia. Dementia, 6, 383–409. doi:10.1177/1471301207081571.Google Scholar
Hsieh, S., Irish, M., Daveson, N., Hodges, J. R. and Piguet, O. (2013). When one loses empathy: its effects on carers of patients with dementia. Journal of Geriatric Psychiatry and Neurology, 26, 174–184. doi:10.1177/0891988713495448.Google Scholar
Kaiser, S. and Panegyres, P. K. (2007). The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer's Diesase and Other Dementias, 21, 398–402. doi:10.1177/1533317506293259.Google Scholar
Karner, T. X. and Bobbitt-Zeher, D. (2005). Losing selves: dementia care as disruption and transformation. Symbolic Interaction, 28, 549–570. doi:10.1525/si.2005.28.4.525.Google Scholar
Kendig, H., Browning, C., Pedlow, R, Wells, Y. and Thomas, S. (2010). Health, social, and lifestyle factors in entry to residential aged care: an Australian longitudinal analysis. Age and Ageing, 39, 342–349. doi:10.1093/ageing/afq016.Google Scholar
Knop, D. S., Bergman-Evans, B. and McCabe, B. W. (1998). In sickness and in health: an exploration of the perceived quality of the marital relationship, coping and deptression in caregivers of spouses with Alzheimer's Disease. Journal of Psychosocial Nursing, 36, 16–21.Google Scholar
Lockeridge, S. and Simpson, J. (2012). The experience of caring for a partner with younger onset dementia: how younger carers cope. Dementia, 12, 635–651. doi:10.1177/1471301212440873.Google Scholar
Massimo, L., Evans, L. and Benner, P. (2013). Caring for loved ones with frontotemporal degeneration: the lived experiences of spouses. Geriatric Nursing, 34, 302–306. doi:1.1016/j.gerinurse.2013.05.001.Google Scholar
Mioshi, E., Bristow, M., Cook, R. and Hodges, J. R. (2009). Factors underlying care givers stress in frontotemporal dementia and Alzheimer's disease. Dementia Geriatric Cognitive Disorders, 27, 76–81, doi:10.1159/000193626.Google Scholar
Molyneaux, V. J., Butchard, S., Simpson, J. and Murray, C. (2011). The co-construction of couplehood in dementia. Dementia, 11, 483–502. doi:10.1177/1471301211421070.Google Scholar
Morgan, D. G. et al. (2014). Informal caregivers’ hopes and expectations of a referral to a memory clinic. Social Science and Medicine, 102, 111–118. doi:1.1016/j.socscimed.2013.11.023.Google Scholar
Muller, N. and Schrauf, R. W. (2014). Conversation as cognition: reframing cognition in dementia. In Schrauf, R. W. and Muller, N. (eds.), Dialogue and Dementia: Cognitive and Communicative Resources for Engagement. New York: Psychological Press.Google Scholar
Murray, J., Schneider, J., Banerjee, S. and Mann, A. (1999). A cross-national study of co-resident spouse carers for people with Alzheimer's Disease: II - A qualitative anaylsis of the experience of caregiving. International Journal of Geriatric Psychiatry, 14, 662–667. doi:10.1002/(SICI)1099-1166(199908)14:8.3.0.CO;2-4>CrossRefGoogle Scholar
Nelis, S. M. et al. (2011). Awareness of social and emotional functioning in people with early-onset dementia and implications for carers. Aging and Mental Health, 15, 961–969. doi:10.1080/13607863.2011.575350.Google Scholar
O’Shaughnessy, M., Lee, K. and Lintern, T. (2010). Changes in the couple relationship in dementia care: spouse carers’ experiences. Dementia, 9, 237–258. doi:10.1177/1471301209354021.Google Scholar
Oyebode, J. R., Bradley, P. and Allen, J. L. (2013). Relatives’ experience of frontal-variant frontotemporal dementia. Qualitative Health Research, 23, 156–166. doi:10.1177/1049732312466294.CrossRefGoogle ScholarPubMed
Perlman, D. (2008). Initmate Relationships. New York: McGraw-Hill.Google Scholar
Perry, J. and O'Connor, D. (2002). Preserving personhood: (Re)membering the spouse with dementia. Family Relations, 51, 55–61.Google Scholar
Rosness, T. A., Mjorud, M. and Engedal, K. (2011). Quality of life and depression in carers of patients with early onset dementia. Aging and Mental Health, 15, 299–306. doi:10.1080/13607861003713224.Google Scholar
Sandelowski, M., Docherty, S. and Emden, C. (1997). Qualitative meta-synthesis: issues and techniques. Research in Nursing and Health, 20, 365–371.Google Scholar
Savundranayagam, M. Y., Hummert, M. L. and Montgomery, R. J. V. (2005). Investigating the effects of communication problems on caregiver burden. The Gerontological Society of America, 60, 48–55. doi:10.1017/S1041610211000408.Google ScholarPubMed
Schrauf, R. W. and Iris, M. (2014). What they’re said to say: the discursive construction of Alzheimer's diease by older adults. In Schrauf, R. W. and Muller, N. (eds.), Dialogue and Dementia: Cognitive and Communicative Resources for Engagement. New York: Psychological Press.Google Scholar
Shim, B., Barroso, J. and Davis, L. L. (2012). A comparative analysis of stories of spousal caregivers of people with dementia: negative, ambivalent, and positive experiences. International Journal of Nursing Studies, 49, 220–229. doi:10.1016/jijnurstu.2011.09.003.Google Scholar
Speechly, C. M., Bridges-Web, C. and Passmore, E. (2008). The pathway to dementia diagnosis. The Medical Journal of Australia, 189, 487–489.Google Scholar
Tong, A., Flemming, K., McInnes, E., Oliver, S. and Craig, J. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BioMed Central (BMC) Medical Research Methodology, 12, 181–189. http://www.biomedicalcentral.com/1471-2288/12/181.Google Scholar
Tower, R. B., Kasl, S. V. and Darefsky, A. S. (2002). Types of marital closeness and mortality risk in older couples. Psychosomatic Medicine, 64, 644–659. doi:10.0033-3174/02/6404-0644.Google Scholar
Umberson, D., Williams, K., Powers, D. A., Liu, H. and Needham, B. (2006). You make me sick: marital quality and health over the life course. Journal of Health Social Behavior, 47, 1–16. doi:10.1177/002214650604700101.Google Scholar
Van Vliet, D. et al. (2011). Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics, 23, 1393–1404. doi:10.1017/S1041610211001013.Google Scholar
World Health Organization (WHO) in conjunction with Alzheimer's Disease International (2012). Dementia: A Public Health Priority. Geneva: WHO.Google Scholar
Wright, L. K. (1991). The impact of Alzheimer's disease on the marital relationship. The Gerontological Society of America, 31, 224–237.Google Scholar