Sense of Coherence in Persons with Dementia and Their Next of Kin—A Mixed-Method Study
Affiliation(s)
1 Department of Nursing, Mid Sweden University, Sundsvall, Sweden. 2 Head of Support Centre, Harnosand Municipality, Harnosand, Sweden.
1 Department of Nursing, Mid Sweden University, Sundsvall, Sweden. 2 Head of Support Centre, Harnosand Municipality, Harnosand, Sweden.
ABSTRACT
Indications of dementia disease include deterioration of memory, thinking, behaviour, and the ability to perform everyday activities. Any of these symptoms can lead to stress and difficulties organizing everyday life. As a way to view factors that support human health and well-being despite stressful situations, Antonovsky introduced a salutogenic model. This model proposes that sense of coherence primarily determines physical and mental health i.e. psychological well-being. Having a sense of coherence in everyday life can reduce the impact of stress on the individual in everyday life. The study’s aim of this study was to explore how participants in existing support groups scored on the Sense of Coherence Scale (SOC), and what they perceived as contributory factors to a meaningful, manageable, and comprehensible everyday life in the presence of dementia using a mixed method. Persons with dementia had the highest scores on the SOC scale and their partners the lowest. Persons with dementia expressed that being with others who understood them made their everyday life comprehensible and manageable. Their partners expressed that learning about dementia was helpful in managing and comprehending everyday situations. The adult children expressed that it was meaningful to care for their parents and they scored slightly higher than the partners on the SOC scale. Long-term ongoing support supplemented with information and social support can contribute to the sense of coherence in persons with dementia and their next of kin.
Indications of dementia disease include deterioration of memory, thinking, behaviour, and the ability to perform everyday activities. Any of these symptoms can lead to stress and difficulties organizing everyday life. As a way to view factors that support human health and well-being despite stressful situations, Antonovsky introduced a salutogenic model. This model proposes that sense of coherence primarily determines physical and mental health i.e. psychological well-being. Having a sense of coherence in everyday life can reduce the impact of stress on the individual in everyday life. The study’s aim of this study was to explore how participants in existing support groups scored on the Sense of Coherence Scale (SOC), and what they perceived as contributory factors to a meaningful, manageable, and comprehensible everyday life in the presence of dementia using a mixed method. Persons with dementia had the highest scores on the SOC scale and their partners the lowest. Persons with dementia expressed that being with others who understood them made their everyday life comprehensible and manageable. Their partners expressed that learning about dementia was helpful in managing and comprehending everyday situations. The adult children expressed that it was meaningful to care for their parents and they scored slightly higher than the partners on the SOC scale. Long-term ongoing support supplemented with information and social support can contribute to the sense of coherence in persons with dementia and their next of kin.
Cite this paper
Kjallman Alm, A. , Hagglund, P. , Karl-Gustaf, N. and Ove, H. (2015) Sense of Coherence in Persons with Dementia and Their Next of Kin—A Mixed-Method Study. Open Journal of Nursing, 5, 490-499. doi: 10.4236/ojn.2015.55052.
Kjallman Alm, A. , Hagglund, P. , Karl-Gustaf, N. and Ove, H. (2015) Sense of Coherence in Persons with Dementia and Their Next of Kin—A Mixed-Method Study. Open Journal of Nursing, 5, 490-499. doi: 10.4236/ojn.2015.55052.
References
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http://dx.doi.org/10.1017/S1041610207005765 [2] Mountain, G.A. (2006) Self-Management for People with Early Dementia: An Exploration of Concepts and Supporting Evidence. Dementia, 5, 429-446.
http://dx.doi.org/10.1177/1471301206067117 [3] Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham. [4] Greenberg, M.S., Tanev, K., Marin, M.-F. and Pitman, R.K. (2014) Stress, PTSD, and Dementia. Alzheimer’s & Dementia, 10, 155-165.
http://dx.doi.org/10.1016/j.jalz.2014.04.008 [5] Andel, R., Crowe, M., Hahn, E.A., Mortimer, J.A., Pedersen, N.L., Fratiglioni, L., Johansson, B. and Gatz, M. (2012) Work-Related Stress May Increase the Risk of Vascular Dementia. Journal of American Geriatric Society, 60, 60-67.
http://dx.doi.org/10.1111/j.1532-5415.2011.03777.x [6] Hölttä, E.H., Laurila, J.V., Laakkonen, M.L., Strandberg, T.E., Tilvis, R.S. and Pitkala, K.H. (2014) Precipitating Factors of Delirium: Stress Response to Multiple Triggers among Patients with and without Dementia. Experimental Gerontology, 59, 42-46.
http://dx.doi.org/10.1016/j.exger.2014.04.014 [7] Inouye, S.K., Westendorp, R.G.J. and Saczynski, J.S. (2014) Delirium in Elderly People. Lancet, 383, 911-922.
http://dx.doi.org/10.1016/S0140-6736(13)60688-1 [8] Alzheimers Association (2014) The 2014 Alzheimer’s Association Women and Alzheimer’s Poll.
http://www.alz.org/downloads/facts_figures_2014.pdf [9] Hedman, R., Hansebo, G., Ternestedt, B.M., Hellström, I. and Norberg, A. (2012) How People with Alzheimer’s Disease Express Their Sense of Self: Analysis Using Harrés Theory of Selfhood. Dementia, 12, 713-733.
http://dx.doi.org/10.1177/1471301212444053 [10] WHO (2012) Dementia: A Public Health Priority.
http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf [11] Swedish Social Services Act (2009) Law, 2009:549. (In Swedish)
http://www.riksdagen.se/sv/DokumentLagar/Lagar/Svenskforfattningssamling/Socialtjanstlag-2001453_sfs-2001-453/?bet=2001:453 [12] Donaldson, C., Tarrier, N. and Burns, A. (1998) Determinants of Carer Stress in Alzheimer’s Disease. International Journal of Geriatric Psychiatry, 13, 248-256.
http://dx.doi.org/10.1002/(SICI)1099-1166(199804)13:4<248::AID-GPS770>3.0.CO;2-0 [13] McConaghy, R. and Caltabiano, M.L. (2005) Caring for a Person with Dementia: Exploring Relationships between Perceived Burden, Depression, Coping and Well-Being. Nursing and Health Sciences, 7, 81-91.
http://dx.doi.org/10.1111/j.1442-2018.2005.00213.x [14] Sanders, S. (2005) Is the Glass Half Empty or Half Full? Social Work in Health Care, 40, 57-73.
http://dx.doi.org/10.1300/J010v40n03_04 [15] Schoenmakers, B., Buntinx, F. and Depeleire, J. (2010) Factors Determining the Impact of Care-Giving on Caregivers of Elderly Patients with Dementia. A Systematic Literature Review. Maturitas, 66, 191-200.
http://dx.doi.org/10.1016/j.maturitas.2010.02.009 [16] Antonovsky, A. (1979) Health, Stress, and Coping. Jossey-Bass Inc., San Francisco. [17] Antonovsky, A. (1987) Unraveling the Mysteries of Health. Jossey-Bass Inc., San Francisco. [18] Becker, C.M., Glascoff, M.A. and Felts, M. (2010) Salutogenesis 30 Years Later: Where Do We Go from Here? International Electronic Journal of Health Education, 13, 25-32. [19] Orgeta, V. and Sterzo, E.L. (2013) Sense of Coherence, Burden, and Affective Symptoms in Family Carers of People with Dementia. International Psychogeriatrics, 25, 973-980.
http://dx.doi.org/10.1017/S1041610213000203 [20] Coen, R.F., Stanwick, G.R., O’Boyle, C.A. and Coakley, D. (1997) Behavior Disturbance and Other Predictors of Carer Burden in Alzheimer’s Disease. International Journal of Geriatric Psychiatry, 12, 331-336.
http://dx.doi.org/10.1002/(SICI)1099-1166(199703)12:3<331::AID-GPS495>3.0.CO;2-J [21] Jegermalm, M. (2003) Direct and Indirect Support for Carers. Journal of Gerontological Social Work, 38, 67-84.
http://dx.doi.org/10.1300/J083v38n04_07 [22] 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, 9, 289-297. [23] 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, 10. [24] Antonovsky, A. (1993) The Structure and Properties of the Sense of Coherence Scale. Social Science & Medicine, 36, 725-733.
http://dx.doi.org/10.1016/0277-9536(93)90033-Z [25] Eriksson, M. and Lindström, B. (2006) Antonovsky’s Sense of Coherence Scale and the Relation with Health: Systematic Review. Journal of Epidemiology & Community Health, 60, 376-381.
http://dx.doi.org/10.1136/jech.2005.041616 [26] Sarvimäki, A. and Stenbock-Hult, B. (2000) Quality of Life in Old Age Described as a Sense of Well-Being, Meaning and Value. Journal of Advanced Nursing, 32, 1025-1033.
http://dx.doi.org/10.1046/j.1365-2648.2000.01568.x [27] Schumacher, J., Wilz, G., Gulzelmann, T. and Brähler, E. (2000) Die Sense of Coherence Scale von Antonovsky—Teststatistische überprüfung in einer repräsentativen Bevölkerungsstichprobe und Konstruktion einer Kurzskala. Psychotherapie Psychosomatik Medizinische Psychologie, 50, 472-482. (In German)
http://dx.doi.org/10.1055/s-2000-9207 [28] Elo, S. and Kyngäs, H. (2008) The Qualitative Content Analysis Process. Journal of Advanced Nursing, 62, 107-115.
http://dx.doi.org/10.1111/j.1365-2648.2007.04569.x [29] Creswell, J. (2009) Research Design. Qualitative, Quantitative, and Mixed Methods Approaches. 3rd Edition, Sage, California. [30] Schneider, G., Driesch, G., Kruse, A., Wachter, M., Nehen, H.-G. and Heuft, G. (2004) What Influences Self-Perception of Health in the Elderly? The Role of Objective Health Condition, Subjective Well-Being and Sense of Coherence. Archives of Gerontology and Geriatrics, 39, 227-237.
http://dx.doi.org/10.1016/j.archger.2004.03.005 [31] Duggleby, W.D., Swindle, J., Peacock, S. and Gosh, S. (2011) A Mixed Method Study of Hope, Transitions and Quality of Life in Family Caregivers of Persons with Alzheimer’s Disease. BMC Geriatrics, 11, 88.
http://dx.doi.org/10.1186/1471-2318-11-88 [32] Romero, B. (2004) Selbsterhaltungstherapie: Konzept, klinische Praxis und bisherige Ergebnisse (Self-Maintenance Therapy: Concept, Clinical Implementation, and Outcomes). Zeitschrift für Gerontopsychologie & Psychiatri, 17, 119-134. [33] Jetten, J., Haslam, C., Pugliese, C., Tonks, J. and Haslam, S.A. (2010) Declining Autobiographical Memory and the Loss of Identity: Effects on Well-Being. Journal of Clinical and Experimental Neuropsychology, 32, 408-416.
http://dx.doi.org/10.1080/13803390903140603 [34] Massimi, M., Berry, E., Browne, G., Smyth, G., Watson, P. and Baecker, R.M. (2008) An Exploratory Case Study of the Impact of Ambient Biographical Displays on Identity in a Patient with Alzheimer’s Disease. Neuropsychological Rehabilitation, 18, 742-765.
http://dx.doi.org/10.1080/09602010802130924 [35] Antonovsky, A. (1984) The Sense of Coherence as a Determinant in Health. In: Matarazzo, J.D., Ed., Behavioral Health: A Handbook of Health Enhancement and Disease Prevention, John Wiley, New York, 114-129. [36] Sullivan, G.C. (1993) Towards Clarification of Convergent Concepts: Sense of Coherence, Will to Meaning, Locus of Control, Learned Helplessness and Hardiness. Journal of Advanced Nursing, 11, 1772-1778.
http://dx.doi.org/10.1046/j.1365-2648.1993.18111772.x [37] Pinquart, M. and Sörensen, S. (2006) Helping Caregivers of Persons with Dementia: Which Interventions Work and How Large Are Their Effects? International Psychogeriatrics, 18, 577-595.
http://dx.doi.org/10.1017/S1041610206003462 [38] Olazarán, J., Reisberg, B., Clare, L., Cruz, I., Pena-Casanova, J., del Ser, T., Woods, B., et al. (2010) Nonpharmacological Therapies in Alzheimer’s Disease: A Systematic Review of Efficacy. Dementia and Geriatric Cognitive Disorders, 30, 161-178.
http://dx.doi.org/10.1159/000316119 [39] Frankl, V.E. (2006) Man’s Search for Meaning. Beacon Press, Boston. [40] Antonovsky, H. and Sagy, S. (2001) The Development of a Sense of Coherence and Its Impact on Responses to Stress Situations. The Journal of Social Psychology, 126, 213-225. [41] Erikson, H.E. (1997) The Life Cycle Completed. W. W. Norton & Company Inc., New York. [42] Hart, K.E., Hittner, J.B. and Paras, K.C. (1991) Sense of Coherence, Trait Anxiety and the Perceived Availability of Social Support. Journal of Research in Personality, 25, 137-245.
http://dx.doi.org/10.1016/0092-6566(91)90010-N
[1] De Boer, M.E., Herthog, C.M., Dröes, R.-M., Riphagen, I.I., Jonker, C. and Eefsting, J.A. (2007) Suffering from Dementia—The Patient’s Perspective: A Review of the Literature. International Psychogeriatrics, 19, 1021-1039.
http://dx.doi.org/10.1017/S1041610207005765 [2] Mountain, G.A. (2006) Self-Management for People with Early Dementia: An Exploration of Concepts and Supporting Evidence. Dementia, 5, 429-446.
http://dx.doi.org/10.1177/1471301206067117 [3] Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham. [4] Greenberg, M.S., Tanev, K., Marin, M.-F. and Pitman, R.K. (2014) Stress, PTSD, and Dementia. Alzheimer’s & Dementia, 10, 155-165.
http://dx.doi.org/10.1016/j.jalz.2014.04.008 [5] Andel, R., Crowe, M., Hahn, E.A., Mortimer, J.A., Pedersen, N.L., Fratiglioni, L., Johansson, B. and Gatz, M. (2012) Work-Related Stress May Increase the Risk of Vascular Dementia. Journal of American Geriatric Society, 60, 60-67.
http://dx.doi.org/10.1111/j.1532-5415.2011.03777.x [6] Hölttä, E.H., Laurila, J.V., Laakkonen, M.L., Strandberg, T.E., Tilvis, R.S. and Pitkala, K.H. (2014) Precipitating Factors of Delirium: Stress Response to Multiple Triggers among Patients with and without Dementia. Experimental Gerontology, 59, 42-46.
http://dx.doi.org/10.1016/j.exger.2014.04.014 [7] Inouye, S.K., Westendorp, R.G.J. and Saczynski, J.S. (2014) Delirium in Elderly People. Lancet, 383, 911-922.
http://dx.doi.org/10.1016/S0140-6736(13)60688-1 [8] Alzheimers Association (2014) The 2014 Alzheimer’s Association Women and Alzheimer’s Poll.
http://www.alz.org/downloads/facts_figures_2014.pdf [9] Hedman, R., Hansebo, G., Ternestedt, B.M., Hellström, I. and Norberg, A. (2012) How People with Alzheimer’s Disease Express Their Sense of Self: Analysis Using Harrés Theory of Selfhood. Dementia, 12, 713-733.
http://dx.doi.org/10.1177/1471301212444053 [10] WHO (2012) Dementia: A Public Health Priority.
http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf [11] Swedish Social Services Act (2009) Law, 2009:549. (In Swedish)
http://www.riksdagen.se/sv/DokumentLagar/Lagar/Svenskforfattningssamling/Socialtjanstlag-2001453_sfs-2001-453/?bet=2001:453 [12] Donaldson, C., Tarrier, N. and Burns, A. (1998) Determinants of Carer Stress in Alzheimer’s Disease. International Journal of Geriatric Psychiatry, 13, 248-256.
http://dx.doi.org/10.1002/(SICI)1099-1166(199804)13:4<248::AID-GPS770>3.0.CO;2-0 [13] McConaghy, R. and Caltabiano, M.L. (2005) Caring for a Person with Dementia: Exploring Relationships between Perceived Burden, Depression, Coping and Well-Being. Nursing and Health Sciences, 7, 81-91.
http://dx.doi.org/10.1111/j.1442-2018.2005.00213.x [14] Sanders, S. (2005) Is the Glass Half Empty or Half Full? Social Work in Health Care, 40, 57-73.
http://dx.doi.org/10.1300/J010v40n03_04 [15] Schoenmakers, B., Buntinx, F. and Depeleire, J. (2010) Factors Determining the Impact of Care-Giving on Caregivers of Elderly Patients with Dementia. A Systematic Literature Review. Maturitas, 66, 191-200.
http://dx.doi.org/10.1016/j.maturitas.2010.02.009 [16] Antonovsky, A. (1979) Health, Stress, and Coping. Jossey-Bass Inc., San Francisco. [17] Antonovsky, A. (1987) Unraveling the Mysteries of Health. Jossey-Bass Inc., San Francisco. [18] Becker, C.M., Glascoff, M.A. and Felts, M. (2010) Salutogenesis 30 Years Later: Where Do We Go from Here? International Electronic Journal of Health Education, 13, 25-32. [19] Orgeta, V. and Sterzo, E.L. (2013) Sense of Coherence, Burden, and Affective Symptoms in Family Carers of People with Dementia. International Psychogeriatrics, 25, 973-980.
http://dx.doi.org/10.1017/S1041610213000203 [20] Coen, R.F., Stanwick, G.R., O’Boyle, C.A. and Coakley, D. (1997) Behavior Disturbance and Other Predictors of Carer Burden in Alzheimer’s Disease. International Journal of Geriatric Psychiatry, 12, 331-336.
http://dx.doi.org/10.1002/(SICI)1099-1166(199703)12:3<331::AID-GPS495>3.0.CO;2-J [21] Jegermalm, M. (2003) Direct and Indirect Support for Carers. Journal of Gerontological Social Work, 38, 67-84.
http://dx.doi.org/10.1300/J083v38n04_07 [22] 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, 9, 289-297. [23] 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, 10. [24] Antonovsky, A. (1993) The Structure and Properties of the Sense of Coherence Scale. Social Science & Medicine, 36, 725-733.
http://dx.doi.org/10.1016/0277-9536(93)90033-Z [25] Eriksson, M. and Lindström, B. (2006) Antonovsky’s Sense of Coherence Scale and the Relation with Health: Systematic Review. Journal of Epidemiology & Community Health, 60, 376-381.
http://dx.doi.org/10.1136/jech.2005.041616 [26] Sarvimäki, A. and Stenbock-Hult, B. (2000) Quality of Life in Old Age Described as a Sense of Well-Being, Meaning and Value. Journal of Advanced Nursing, 32, 1025-1033.
http://dx.doi.org/10.1046/j.1365-2648.2000.01568.x [27] Schumacher, J., Wilz, G., Gulzelmann, T. and Brähler, E. (2000) Die Sense of Coherence Scale von Antonovsky—Teststatistische überprüfung in einer repräsentativen Bevölkerungsstichprobe und Konstruktion einer Kurzskala. Psychotherapie Psychosomatik Medizinische Psychologie, 50, 472-482. (In German)
http://dx.doi.org/10.1055/s-2000-9207 [28] Elo, S. and Kyngäs, H. (2008) The Qualitative Content Analysis Process. Journal of Advanced Nursing, 62, 107-115.
http://dx.doi.org/10.1111/j.1365-2648.2007.04569.x [29] Creswell, J. (2009) Research Design. Qualitative, Quantitative, and Mixed Methods Approaches. 3rd Edition, Sage, California. [30] Schneider, G., Driesch, G., Kruse, A., Wachter, M., Nehen, H.-G. and Heuft, G. (2004) What Influences Self-Perception of Health in the Elderly? The Role of Objective Health Condition, Subjective Well-Being and Sense of Coherence. Archives of Gerontology and Geriatrics, 39, 227-237.
http://dx.doi.org/10.1016/j.archger.2004.03.005 [31] Duggleby, W.D., Swindle, J., Peacock, S. and Gosh, S. (2011) A Mixed Method Study of Hope, Transitions and Quality of Life in Family Caregivers of Persons with Alzheimer’s Disease. BMC Geriatrics, 11, 88.
http://dx.doi.org/10.1186/1471-2318-11-88 [32] Romero, B. (2004) Selbsterhaltungstherapie: Konzept, klinische Praxis und bisherige Ergebnisse (Self-Maintenance Therapy: Concept, Clinical Implementation, and Outcomes). Zeitschrift für Gerontopsychologie & Psychiatri, 17, 119-134. [33] Jetten, J., Haslam, C., Pugliese, C., Tonks, J. and Haslam, S.A. (2010) Declining Autobiographical Memory and the Loss of Identity: Effects on Well-Being. Journal of Clinical and Experimental Neuropsychology, 32, 408-416.
http://dx.doi.org/10.1080/13803390903140603 [34] Massimi, M., Berry, E., Browne, G., Smyth, G., Watson, P. and Baecker, R.M. (2008) An Exploratory Case Study of the Impact of Ambient Biographical Displays on Identity in a Patient with Alzheimer’s Disease. Neuropsychological Rehabilitation, 18, 742-765.
http://dx.doi.org/10.1080/09602010802130924 [35] Antonovsky, A. (1984) The Sense of Coherence as a Determinant in Health. In: Matarazzo, J.D., Ed., Behavioral Health: A Handbook of Health Enhancement and Disease Prevention, John Wiley, New York, 114-129. [36] Sullivan, G.C. (1993) Towards Clarification of Convergent Concepts: Sense of Coherence, Will to Meaning, Locus of Control, Learned Helplessness and Hardiness. Journal of Advanced Nursing, 11, 1772-1778.
http://dx.doi.org/10.1046/j.1365-2648.1993.18111772.x [37] Pinquart, M. and Sörensen, S. (2006) Helping Caregivers of Persons with Dementia: Which Interventions Work and How Large Are Their Effects? International Psychogeriatrics, 18, 577-595.
http://dx.doi.org/10.1017/S1041610206003462 [38] Olazarán, J., Reisberg, B., Clare, L., Cruz, I., Pena-Casanova, J., del Ser, T., Woods, B., et al. (2010) Nonpharmacological Therapies in Alzheimer’s Disease: A Systematic Review of Efficacy. Dementia and Geriatric Cognitive Disorders, 30, 161-178.
http://dx.doi.org/10.1159/000316119 [39] Frankl, V.E. (2006) Man’s Search for Meaning. Beacon Press, Boston. [40] Antonovsky, H. and Sagy, S. (2001) The Development of a Sense of Coherence and Its Impact on Responses to Stress Situations. The Journal of Social Psychology, 126, 213-225. [41] Erikson, H.E. (1997) The Life Cycle Completed. W. W. Norton & Company Inc., New York. [42] Hart, K.E., Hittner, J.B. and Paras, K.C. (1991) Sense of Coherence, Trait Anxiety and the Perceived Availability of Social Support. Journal of Research in Personality, 25, 137-245.
http://dx.doi.org/10.1016/0092-6566(91)90010-N