Experiences of Family Relationships When a Family Member Has Dementia
ABSTRACT
Approximately 66 million people worldwide will suffer from dementia in 2030. The dementia’s impact affects people with the disorder and those in their social networks, most notably, their families. This study’s aim was to explore the experiences of family relationships when a family member has dementia. We conducted semi-structured interviews with people diagnosed with dementia, their spouses and adult children. Seventeen participants were interviewed. All participants were recruited in open-ended ongoing structured support groups provided by a Swedish municipality in order to elicit the participants’ subjective experiences on family relationships after the dementia diagnosis. Researchers used content analysis to examine the transcripts. Two main themes were identified, one relating to changed relationships where the participants experienced longing, lost closeness, loneliness and changed sibling relationships. The second theme related to supporting relationships within the family with experiences such as kinship, shared responsibilities and love and appreciation. Support should therefore focus on creating relationships and giving opportunities for conversations about changes within the families and difficult decisions, creating family or team support for those who need it.
Cite this paper
Alm, A. , Hellzen, O. and Norbergh, K. (2014) Experiences of Family Relationships When a Family Member Has Dementia. Open Journal of Nursing, 4, 520-527. doi: 10.4236/ojn.2014.47055.
Alm, A. , Hellzen, O. and Norbergh, K. (2014) Experiences of Family Relationships When a Family Member Has Dementia. Open Journal of Nursing, 4, 520-527. doi: 10.4236/ojn.2014.47055.
References
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http://www.alz.co.uk/research/WorldAlzheimerReport2012.pdf [2] SBU—The Swedish Council on Health Technology Assessment (2006) Demenssjukdomar—En systematisk litteraturöversikt (in Swedish). [3] Orange, J.B. (1991) Perspectives of Family Members Regarding Communication Changes. In: Lubinski, R. and Orange, J.B., Eds., Dementia and Communication, B. C. Decker, Hamilton, 168-186. [4] Small, J.A., Geldart, K. and Gutman, G. (2000) Communication between Individuals with Dementia and Their Caregivers during Activities of Daily Living. American Journal of Alzheimer’s Disease and Other Dementias, 15, 291.
http://dx.doi.org/10.1177/153331750001500511 [5] Brewer, J. (2005) Carousel Conversation: Aspects of Family Roles and Topic Shift in Alzheimer’s Talk. In: Davis, B., Ed., Alzheimer Talk, Text, and Context, Palgrave MacMillan, Basingstoke, 87-101. [6] Savundranayagam, M., Hummert, M.L. and Montgomery, R.J.V. (2005) Investigating the Effects of Communication Problems on Caregiver Burden. Journal of Gerontology, 60B, S48-S55.
http://dx.doi.org/10.1093/geronb/60.1.S48 [7] Roach, P. and Keady, J. (2008) Young People with Dementia: Time for Fair Play. Comment Piece. British Journal of Nursing, 17, 690.
http://dx.doi.org/10.12968/bjon.2008.17.11.29604 [8] Keady, J. and Harris, P.B. (2009) Family Matters. Dementia: The International Journal of Social Research and Practice, 8, 3-8.
http://dx.doi.org/10.1177/1471301208099042 [9] MacRae, H. (2002) The Identity Maintenance Work of Family Members of Persons with Alzheimer’s Disease. Canadian Journal on Aging, 32, 405-415.
http://dx.doi.org/10.1017/S0714980800001720 [10] Lee, Y. and Smith, L. (2012) Qualitative Research on Korean American Dementia Caregivers’ Perception of Caregiving: Heterogeneity between Spouse Caregivers and Child Caregivers. Journal of Human Behavior in the Social Environment, 22, 115-129.
http://dx.doi.org/10.1080/10911359.2012.646840 [11] Garwick, A.W., Detzner, D. and Boss, P. (1994) Family Perceptions of Living with Alzheimer’s Disease. Family Process, 33, 327-340.
http://dx.doi.org/10.1111/j.1545-5300.1994.00327.x [12] WHO (2012) Dementia: A Public Health Priority.
http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf [13] Swedish Social Services Act. (2009) Law 2009: 549.
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http://dx.doi.org/10.1111/opn.12034 [15] Kjallman Alm, A., Norbergh, K.-G. and Hellzen, O. (2013) What It Means to Be an Adult Child of a Person with Dementia. International Journal of Qualitative Studies on Health and Well-Being, 8.
http://dx.doi.org/10.3402/qhw.v8i0.21676 [16] Patton, M.Q. (2002) Qualitative Research and Evaluation Methods. 3rd Edition, Sage Publications, Thousand Oaks. [17] Ryan, G.W. and Russell Bernard, H. (2003) Techniques to Identify Themes. Field Methods, 15, 85-109.
http://dx.doi.org/10.1177/1525822X02239569 [18] Marshall, A., Bell, J.M. and Moules, N.J. (2010) Beliefs, Suffering, and Healing: A Clinical Practice Model for Families Experiencing Mental Illness. Perspectives in Psychiatric Care, 46, 197-208.
http://dx.doi.org/10.1111/j.1744-6163.2010.00259.x [19] Walters, A.H., Oyebode, J.R. and Riley, G.A. (2010) The Dynamics of Continuity and Discontinuity for Women Caring for a Spouse with Dementia. Dementia, 9, 169-189.
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http://dx.doi.org/10.1080/13607860802380623 [26] Liedström, E., Kihlgren, A., Skovdahl, K. and Windahl, J. (2014) Being a Next of Kin—Experiences of Burden and Quality of Life. Open Journal of Nursing, 4, 275-286.
http://dx.doi.org/10.4236/ojn.2014.44032 [27] Pike, A., Coldwell, J. and Dunn, J. (2009) Siblings-Friends or Foes? Childhood, 22, 494-497.
http://www.thepsychologist.org.uk/archive/archive_home.cfm/volumeID_22-editionID_176-ArticleID_1518-getfile_getPDF/thepsychologist%5C0609pike.pdf [28] Addis, D.R. and Tippett, L. (2010) Memory of Myself: Autobiographical Memory and Identity in Alzheimer’s Disease. Memory, 12, 56-74.
http://dx.doi.org/10.1080/09658210244000423 [29] Goffman, E. (2004) Jaget och maskerna. Rabén & Sjögren, Elanders Infologistics Väst AB (in Swedish). [30] Loughran, H. (2011) Understanding Crisis Therapies: An Integrative Approach to Crisis Intervention and Post-Traumatic Stress. Jessica Kingsley Publishers, London. [31] Frankl, V.E. (2006) Man’s Search for Meaning. Beacon Press, Boston.
[1] Batsch, N.L. and Mittelman, M.S. (2012) World Alzheimer Report 2012. “Overcoming the Stigma of Dementia”. Alzheimer’s Disease International.
http://www.alz.co.uk/research/WorldAlzheimerReport2012.pdf [2] SBU—The Swedish Council on Health Technology Assessment (2006) Demenssjukdomar—En systematisk litteraturöversikt (in Swedish). [3] Orange, J.B. (1991) Perspectives of Family Members Regarding Communication Changes. In: Lubinski, R. and Orange, J.B., Eds., Dementia and Communication, B. C. Decker, Hamilton, 168-186. [4] Small, J.A., Geldart, K. and Gutman, G. (2000) Communication between Individuals with Dementia and Their Caregivers during Activities of Daily Living. American Journal of Alzheimer’s Disease and Other Dementias, 15, 291.
http://dx.doi.org/10.1177/153331750001500511 [5] Brewer, J. (2005) Carousel Conversation: Aspects of Family Roles and Topic Shift in Alzheimer’s Talk. In: Davis, B., Ed., Alzheimer Talk, Text, and Context, Palgrave MacMillan, Basingstoke, 87-101. [6] Savundranayagam, M., Hummert, M.L. and Montgomery, R.J.V. (2005) Investigating the Effects of Communication Problems on Caregiver Burden. Journal of Gerontology, 60B, S48-S55.
http://dx.doi.org/10.1093/geronb/60.1.S48 [7] Roach, P. and Keady, J. (2008) Young People with Dementia: Time for Fair Play. Comment Piece. British Journal of Nursing, 17, 690.
http://dx.doi.org/10.12968/bjon.2008.17.11.29604 [8] Keady, J. and Harris, P.B. (2009) Family Matters. Dementia: The International Journal of Social Research and Practice, 8, 3-8.
http://dx.doi.org/10.1177/1471301208099042 [9] MacRae, H. (2002) The Identity Maintenance Work of Family Members of Persons with Alzheimer’s Disease. Canadian Journal on Aging, 32, 405-415.
http://dx.doi.org/10.1017/S0714980800001720 [10] Lee, Y. and Smith, L. (2012) Qualitative Research on Korean American Dementia Caregivers’ Perception of Caregiving: Heterogeneity between Spouse Caregivers and Child Caregivers. Journal of Human Behavior in the Social Environment, 22, 115-129.
http://dx.doi.org/10.1080/10911359.2012.646840 [11] Garwick, A.W., Detzner, D. and Boss, P. (1994) Family Perceptions of Living with Alzheimer’s Disease. Family Process, 33, 327-340.
http://dx.doi.org/10.1111/j.1545-5300.1994.00327.x [12] WHO (2012) Dementia: A Public Health Priority.
http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf [13] Swedish Social Services Act. (2009) Law 2009: 549.
http://www.riksdagen.se/sv/DokumentLagar/Lagar/Svenskforfattningssamling/Socialtjanstlag-2001453_sfs-2001-453/?bet=2001:453 [14] Kjallman Alm, A., Hellzen, O. and Norbergh, K.-G. (2013) Experiences of Long Term Ongoing Structured Support in Early Stage of Dementia—A Case Study. International Journal of Older People Nursing.
http://dx.doi.org/10.1111/opn.12034 [15] Kjallman Alm, A., Norbergh, K.-G. and Hellzen, O. (2013) What It Means to Be an Adult Child of a Person with Dementia. International Journal of Qualitative Studies on Health and Well-Being, 8.
http://dx.doi.org/10.3402/qhw.v8i0.21676 [16] Patton, M.Q. (2002) Qualitative Research and Evaluation Methods. 3rd Edition, Sage Publications, Thousand Oaks. [17] Ryan, G.W. and Russell Bernard, H. (2003) Techniques to Identify Themes. Field Methods, 15, 85-109.
http://dx.doi.org/10.1177/1525822X02239569 [18] Marshall, A., Bell, J.M. and Moules, N.J. (2010) Beliefs, Suffering, and Healing: A Clinical Practice Model for Families Experiencing Mental Illness. Perspectives in Psychiatric Care, 46, 197-208.
http://dx.doi.org/10.1111/j.1744-6163.2010.00259.x [19] Walters, A.H., Oyebode, J.R. and Riley, G.A. (2010) The Dynamics of Continuity and Discontinuity for Women Caring for a Spouse with Dementia. Dementia, 9, 169-189.
http://dx.doi.org/10.1177/1471301209354027 [20] Vellone, E., Piras, G., Talucci, C. and Cohen, M.Z. (2007) Quality of Life for Caregivers of People with Alzheimer’s Disease. Journal of Advanced Nursing, 61, 222-231.
http://dx.doi.org/10.1111/j.1365-2648.2007.04494.x [21] Peisah, C., Brodaty, H. and Quadrio, C. (2006) Family Conflict in Dementia: Prodigal Sons and Black Sheep. International Journal of Geriatric Psychiatry, 21, 458-492. [22] Strang, V., Koop, P., Dupuis-Blanchard, S., Nordstrom, M. and Thompson, B. (2006) Family Caregivers and Transition to Long-Term Care. Clinical Nursing Research, 15, 27-45.
http://dx.doi.org/10.1177/1054773805282356 [23] Harman, G. and Clare, L. (2006) Illness Representation and Lived Experience in Early-Stage Dementia. Qualitative Health Research, 16, 484-502.
http://dx.doi.org/10.1177/1049732306286851 [24] Laakkonen, M.L., Raivio, M., Eloniemi-Sulkava, U., Saareneheimo, M., Pietilä, M., Tilvis, R.S. and Pitkälä, K.H. (2008) How Do Elderly Spouse Care Givers of People with Alzheimer’s Disease Experience the Disclosure of Dementia Diagnosis and Subsequent Care? Journal of Medical Ethics, 34, 427-430.
http://dx.doi.org/10.1136/jme.2007.021956 [25] Quinn, C., Clare, L., Pearce, A. and van Dijkhuizen, M. (2008) The Experience of Providing Care in the Early Stages of Dementia: An Interpretative Phenomenological Analysis. Aging and Mental Health, 12, 769-778.
http://dx.doi.org/10.1080/13607860802380623 [26] Liedström, E., Kihlgren, A., Skovdahl, K. and Windahl, J. (2014) Being a Next of Kin—Experiences of Burden and Quality of Life. Open Journal of Nursing, 4, 275-286.
http://dx.doi.org/10.4236/ojn.2014.44032 [27] Pike, A., Coldwell, J. and Dunn, J. (2009) Siblings-Friends or Foes? Childhood, 22, 494-497.
http://www.thepsychologist.org.uk/archive/archive_home.cfm/volumeID_22-editionID_176-ArticleID_1518-getfile_getPDF/thepsychologist%5C0609pike.pdf [28] Addis, D.R. and Tippett, L. (2010) Memory of Myself: Autobiographical Memory and Identity in Alzheimer’s Disease. Memory, 12, 56-74.
http://dx.doi.org/10.1080/09658210244000423 [29] Goffman, E. (2004) Jaget och maskerna. Rabén & Sjögren, Elanders Infologistics Väst AB (in Swedish). [30] Loughran, H. (2011) Understanding Crisis Therapies: An Integrative Approach to Crisis Intervention and Post-Traumatic Stress. Jessica Kingsley Publishers, London. [31] Frankl, V.E. (2006) Man’s Search for Meaning. Beacon Press, Boston.