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Full-Length Research Report

Perceived Overprotection and Its Association With Quality of Life in Dementia

Published Online:August 22, 2019https://doi.org/10.1024/1662-9647/a000207

Abstract

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

References

  • Alzheimer’s Disease International. (2013). Policy brief for heads of government: The global impact of dementia 2013–2050. Retrieved from https://www.alz.co.uk/research/GlobalImpactDementia2013.pdf First citation in articleGoogle Scholar

  • Alzheimer’s Disease International. (2015). World Alzheimer Report 2015. The global impact of dementia. An analysis of prevalence, incidence, cost and trends. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf First citation in articleGoogle Scholar

  • Amieva, H., Stoykova, R., Matharan, F., Helmer, C., Antonucci, T. C., & Dartigues, J. F. (2010). What aspects of social network are protective for dementia? Not the quantity but the quality of social interactions is protective up to 15 years later. Psychosomatic Medicine, 72, 905–911. https://doi.org/10.1097/PSY.0b013e3181f5e121 First citation in articleCrossref, Google Scholar

  • Arsenault-Lapierre, G., Whitehead, V., Lupien, S., & Howard, C. (2012). Effects of anosognosia on perceived stress and cortisol levels in Alzheimer’s disease. International Journal of Alzheimer’s Disease, 2012, 209570. https://doi.org/10.1155/2012/209570 First citation in articleCrossref, Google Scholar

  • Avorn, J., & Langer, E. (1982). Induced disability in nursing home patients: A controlled trial. Journal of American Geriatric Society, 30, 397–400. First citation in articleCrossref, Google Scholar

  • Bahar-Fuchs, A., Clare, L., & Woods, B. (2013). Cognitive training and cognitive rehabilitation for mild to moderate Alzheimer’s disease and vascular dementia. The Cochrane Database of Systematic Reviews, 6, CD003260. https://doi.org/10.1002/14651858.CD003260.pub2 First citation in articleGoogle Scholar

  • Baten, J., & deJong, H. J. (2016). Bildung: Zahl der Bildungsjahre. Bundeszentrale für politische Bildung [Education: Number of years of education. Federal Agency for Civic Education [own translation]. Retrieved from http://www.bpb.de/nachschlagen/zahlen-und-fakten/deutschland-in-daten/220358/bildung#fr-footnode1 First citation in articleGoogle Scholar

  • Baumgardt, J., Radisch, J., Touil, J., Moock, J., Plewig, H.-J., Kawohl, W., & Rössler, W. (2014). Aspects of sustainability in outpatient health care for demented individuals. Psychiatrische Praxis, 41, 424–431. https://doi.org/10.1055/s-0033-1359974 First citation in articleGoogle Scholar

  • Becker, S., Kaspar, R., & Kruse, A. (2006). Die Bedeutung unterschiedlicher Referenzgruppen für die Beurteilung der Lebensqualität demenzkranker Menschen. Kompetenzgruppenbestimmung mit HILDE. Zeitschrift für Gerontologie und Geriatrie, 39, 350–357. https://doi.org/10.1007/s00391-006-0408-0 First citation in articleCrossref, Google Scholar

  • Berwig, M., Leicht, H., Hartwig, K., & Gertz, J. (2011). Self-rated quality of life in mild cognitive impairment and Alzheimer’s disease. The problem of affective distortion. GeroPsych, 24, 45–51. https://doi.org/10.1024/1662-9647/a000029 First citation in articleLink, Google Scholar

  • Brandenburg, H. (2013). Lebensqualität von Menschen mit schwerer Demenz in Pflegeoasen. Empirische Ergebnisse und methodische Implikationen [Quality of life of people with severe dementia in “nursing oases”] (own translation). Zeitschrift für Gerontologie und Geriatrie, 46, 417–424. https://doi.org/10.1007/s00391-012-0396-1 First citation in articleCrossref, Google Scholar

  • Brodaty, H., & Arasaratnam, B. (2012). Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 169, 946–953. https://doi.org/10.1176/appi.ajp.2012.11101529 First citation in articleCrossref, Google Scholar

  • Burgener, S., & Twigg, P. (2002). Relationships among caregiver factors and quality of life in care recipients with irreversible dementia. Alzheimer Disease and Associated Disorders, 16, 88–102. First citation in articleCrossref, Google Scholar

  • Cheung, D. S., Chien, W. T., & Lai, C. K. (2010). Conceptual framework for cognitive function enhancement in people with dementia. Journal of Clinical Nursing, 20, 1533–1541. https://doi.org/10.1111/j.1365-2702.2010.03584.x First citation in articleCrossref, Google Scholar

  • Clare, L. (2002). Developing awareness about awareness in early-stage dementia. The role of psychosocial factors. Dementia, 1, 295–312. https://doi.org/10.1177/147130120200100303 First citation in articleCrossref, Google Scholar

  • Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 385–396. https://doi.org/10.2307/2136404 First citation in articleCrossref, Google Scholar

  • Cohen, S., & Williamson, G. M. (1988). Perceived stress in a probability sample of the United States. In S. SpacapanS. OskampEds., The social psychology of health (pp. 31–67). Newbury Park, CA: Sage. First citation in articleGoogle Scholar

  • Croteau, C., & Le Dorze, G. (1999). Overprotection in couples with aphasia. Disability and Rehabilitation, 21, 432–437. https://doi.org/10.1080/096382899297413 First citation in articleCrossref, Google Scholar

  • De Boer, M. E., Hertogh, C. M. P. M., Dröes, R. M., Riphagen, I. I., Jonker, C., & Eefsting, J. A. (2007). Suffering from dementia: The patient’s perspective. A review of the literature. International Psychogeriatrics, 19, 1021–1039. First citation in articleCrossref, Google Scholar

  • Deeken, F., Häusler, A., Nordheim, J., Rapp, M., Knoll, N., & Rieckmann, N. (2018). Psychometric properties of the Perceived Stress Scale in a sample of German dementia patients and their caregivers. International Psychogeriatrics, 30, 39–47. https://doi.org/10.1017/S1041610217001387 First citation in articleCrossref, Google Scholar

  • DGPPN Deutsche Gesellschaft für Psychiatrie, Psychotherapie und Nervenheilkunde. (Eds.) (2016). S3 Leitlinien Demenzen. Langversion 2016. Psychosoziale Interventionen [S3 guidelines on dementia. Psychosocial interventions]. 3.4-3.5:84-101. Retrieved from https://www.dgppn.de/_Resources/Persistent/ade50e44afc7eb8024e7f65ed3f44e995583c3a0/S3-LL-Demenzen-240116.pdf First citation in articleGoogle Scholar

  • Draper, B., MacCuspie-Moore, C., & Brodaty, H. (1998). Suicidal ideation and the “wish to die” in dementia patients: The role of depression. Age and Ageing, 27, 503–507. First citation in articleCrossref, Google Scholar

  • Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428. https://doi.org/10.1111/j.1745-7599.2008.00342.x First citation in articleCrossref, Google Scholar

  • Folstein, M. F., Folstein, D. E., & McHugh, P. R. (1975). “Mini-mental state”: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198. First citation in articleCrossref, Google Scholar

  • Ford, E., Greenslade, N., Paudyal, P., Bremmer, S., Banerjee, S., Smith, H. E., Sadhwani, S., & Cassell, J. (2018). Predicting dementia from primary care records: A systematic review and meta-analysis. PLoS One, 13(3). https://doi.org/10.1371/journal.pone.0194735 First citation in articleCrossref, Google Scholar

  • Gilhooly, K. J., Gilhooly, L. M., Sullivan, M. P., McIntyre, A., Wilson, L., Harding, E., Woodbridge, R., & Crutsch, S. (2016). A meta-review of stress, coping and interventions in dementia and dementia care giving. BMC Geriatrics, 16, 106. https://doi.org/10.1186/s12877-016-0280 First citation in articleCrossref, Google Scholar

  • Gräßel, E. (1998). Häusliche Pflege dementiell und nicht dementiell Erkrankter, Teil II: Gesundheit und Belastung der Pflegenden [Domestic care of demented and non-demented patients, part II: Health and burden of carers] (own translation). Zeitschrift für Gerontologie und Geriatrie, 31, 57–62. https://doi.org/10.1007/s003910050019 First citation in articleCrossref, Google Scholar

  • Häusler, A., Sánchez, A., Gellert, P., Deeken, F., Rapp, M., & Nordheim, J. (2016). Perceived stress and quality of life in dementia patients and their caregiving spouses: Does dyadic coping matter? International Psychogeriatrics, 28, 1857–1866. https://doi.org/10.1017/S1041610216001046 First citation in articleCrossref, Google Scholar

  • Hall, G. R., & Buckwalter, K. C. (1987). Progressively lowered stress threshold: A conceptual model for care of adults with Alzheimer’s disease. Archives of Psychiatric Nursing, 1, 399–406. First citation in articleGoogle Scholar

  • Hurt, C., Bhattacharyya, S., Burns, A., Camus, V., Liperoti, R., Mariott, A., … Byrne, J. B. (2008). Patient and caregiver perspectives of quality of life in dementia: An investigation of the relationship to behavioural and psychological symptoms in dementia. Dementia and Geriatric Cognitive Disorders, 26, 138–146. https://doi.org/10.1159/000149584 First citation in articleCrossref, Google Scholar

  • IBM Corp. (2017). IBM SPSS Statistics for Windows (Version 25.0). Armonk, NY: IBM Corp. First citation in articleGoogle Scholar

  • Innes, A., Szymczynska, P., & Stark, C. (2014). Dementia diagnosis and postdiagnostic support in Scottish rural communities: experiences of people with dementia and their families. Dementia (London), 13, 233–247. https://doi.org/10.1177/1471301212460608 First citation in articleCrossref, Google Scholar

  • Jansen, D. L., Rijken, M., Kaptein, Ad. A., Boeschoten, E. W., Dekker, F. W., & Groennnnnewegen, P. P. (2014). The role of social support in dialysis patients’ feelings of autonomy and self-esteem: Is support more beneficial for patients with specific illness perceptions? Families, Systems, & Health, 32, 313–327. https://doi.org/10.1037/fsh0000028 First citation in articleCrossref, Google Scholar

  • Joekes, K., Van Elderen, T., & Schreuers, K. (2007). Self-efficacy and overprotection are related to quality of life, psychological well-being and self-management in cardiac patients. Journal of Health Psychology, 12, 4–16. https://doi.org/10.1177/1359105306069096 First citation in articleCrossref, Google Scholar

  • Keightley, J., & Mitchell, A. (2004). What factors influence mental health professionals when deciding whether or not to share a diagnosis of dementia with the person? Aging & Mental Health, 8, 13–20. https://doi.org/10.1080/13607860310001613284 First citation in articleCrossref, Google Scholar

  • Klie, T., & Leuchtner, J. (2015). Mental capacity: The meaning of the convention on the rights of persons with disabilities for people with dementia in Germany. GeroPsych, 28, 7–15. https://doi.org/10.1024/1662-9647/a000117 First citation in articleLink, Google Scholar

  • Lawton, M. P., & Brody, E. M. (1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. Gerontologist, 9, 179–186. First citation in articleCrossref, Google Scholar

  • Lawton, M. P. (1994). Quality of life in Alzheimer disease. Alzheimer Disease and Associated Disorders, 8, 138–150. First citation in articleCrossref, Google Scholar

  • Leyhe, T., Melcher, T., Linnenmann, C., Klöppel, S., & Hampel, H. (2018). Demenz und Altersdepression [Dementia and late life depression] (own translation). Swiss Archives of Neurology, Psychiatry and Psychotherapy, 169, 70–74. https://doi.org/10.4414/sanp.2018.00571 First citation in articleCrossref, Google Scholar

  • Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (1999). Quality of life in Alzheimer’s disease: Patient and caregiver reports. Journal of Mental Health and Aging, 5, 21–32. First citation in articleGoogle Scholar

  • McKhann, G. M., Knopman, D. S., Chertkow, H., Hyman, B. T., Jack, C. R. Jr., Kawas, C. H., … Phelps, C. H. (2011). The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging–Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s and Dementia, 7, 263–269. https://doi.org/10.1016/j.jalz.2011.03.005 First citation in articleCrossref, Google Scholar

  • Mitchell, A. J., Bird, V., Rizzo, M., & Meader, N. (2010). Which version of the geriatric depression scale is most useful in medical settings and nursing homes? Diagnostic validity meta-analysis. American Journal of Geriatric Psychiatry, 18, 1066–1977. First citation in articleCrossref, Google Scholar

  • Moraes, S. R., & Silva, L. S. (2009). An evaluation of the burden of Alzheimer patients on family caregivers. Cadernos de Saúde Pública, 25, 1807–1815. First citation in articleCrossref, Google Scholar

  • Nordheim, J., Häusler, A., Yasar, S., Suhr, R., Kuhlmey, A., Rapp, M., & Gellert, P. (2019). Psychosocial intervention in couples coping with dementia led by a psychotherapist and a social worker: The DYADEM trial. Journal of Alzheimer’s Disease, 68, 745–755. https://doi.org/10.3233/JAD-180812 First citation in articleCrossref, Google Scholar

  • Oppikofer, S., Albrecht, K., & Martin, M. (2009). Auswirkungen erhöhter sozialer Unterstützung auf das Wohlbefinden kognitiv beeinträchtigter älterer Menschen [Effect of increased social support on the well-being of cognitively impaired elderly people]. Zeitschrift für Gerontologie und Geriatrie, 43, 310–316. https://doi.org/10.1007/s00391-009-0066-0 First citation in articleCrossref, Google Scholar

  • Panke-Kochinke, B. (2015). What is good for me? Improving the self-determination capacity of people with dementia. GeroPsych, 28, 31–42. https://doi.org/10.1024/1662-9647/a000120 First citation in articleLink, Google Scholar

  • Piest, F., & Haag, D. (2012). Nach der Diagnose Unterstützung für Menschen mit Demenz. Ergebnisse einer qualitativen Erhebung. Demenz Support Stuttgart [After diagnosis - Support for people with dementia. Results of a qualitative survey. Dementia Support Stuttgart] (own translation). Retrieved from https://www.demenz-support.de/Repository/Dess_at_work_01_final.pdf First citation in articleGoogle Scholar

  • Pusey, H., & Richards, D. (2001). A systematic review of the effectiveness of psychosocial interventions for carers of people with dementia. Aging and Mental Health, 5, 107–119. https://doi.org/10.1080/13607860120038302 First citation in articleCrossref, Google Scholar

  • Quinn, C., Toms, G., Anderson, D., & Clare, L. (2015). A review of self-management interventions for people with dementia and mild cognitive impairment. Journal of Applied Gerontology, 35, 1154–1188. https://doi.org/10.1177/0733464814566852 First citation in articleCrossref, Google Scholar

  • Radisch, J., Baumgardt, J., Kawohl, W., Mook, J., Rössler, W., & Touil, E. (2015). Behandlungspfade für die ambulante Integrative Versorgung psychisch erkrankter Menschen [Treatment pathways in the outpatient integrated healthcare for mentally ill persons]. Stuttgart: Kohlhammer. First citation in articleGoogle Scholar

  • Rehbock, T. (2002). Autonomie – Fürsorge – Paternalismus. Zur Kritik (medizin-)ethischer Grundbegriffe [Autonomy – Care – Paternalism. On the criticism of (medico-)ethical basic concepts] (own translation). Ethik in der Medizin, 14(3), 131–150. https://doi.org/10.1007/s00481-002-0180-7 First citation in articleCrossref, Google Scholar

  • Schölzel-Dorenbos, C. J., Ettema, T. P., Bos, J., Boelens-van der Knoop, E., Gerritsen, D. L., Hoogeveen, F., … Dröes, R. M. (2007). Evaluating the outcome of psychosocial and pharmacological interventions on quality of life of people with dementia: When to use what QoL instrument? International Journal of Geriatric Psychiatry, 22, 511–519. https://doi.org/10.1002/gps.1719 First citation in articleGoogle Scholar

  • Schokker, M. C., Links, T. P., Bouma, J., Keers, J. C., Sanderman, R., Woleffenbuttel, B. H. R., & Hagedoorn, M. (2011). The role of overprotection by the partner in coping with diabetes: A moderated mediation model. Psychology and Health, 26, 95–111. https://doi.org/10.1080/08870440903342325 First citation in articleCrossref, Google Scholar

  • Schützwohl, M., Reuster, T., Gerner, A., Marschner, K., & Holthoff, V. (2011). Effectiveness of domestic occupational therapy for patients with dementia and their caregivers (ERGODEM): Results from a multi-site RCT. Psychiatrische Praxis, 38, OP41_EC. https://doi.org/10.1055/s-0031-1277845 First citation in articleCrossref, Google Scholar

  • Sheikh, J. I., & Yesavage, J. A. (1986). Geriatric Depression Scale (GDS): Recent evidence and development of a shorter version. Clinical Gerontologist, 5, 165–173. First citation in articleCrossref, Google Scholar

  • Shin, I. S., Carter, M., Masterman, D., Fairbanks, L., & Cummings, J. L. (2005). Neuropsychiatric symptoms and quality of life in Alzheimer disease. The American Journal of Geriatric Psychiatry, 13, 469–474. https://doi.org/10.1176/appi.ajgp.13.6.469 First citation in articleCrossref, Google Scholar

  • Shiozaki, M., Hirai, K., Koyama, A., Inui, H., Yoshida, R., & Tokoro, A. (2011). Negative support of significant others affects psychological adjustment in breast cancer patients. Psychology and Health, 26, 1540–1551. https://doi.org/10.1080/08870446.2010.551211 First citation in articleCrossref, Google Scholar

  • Singh, K., & Xie, M. (2010). Bootstrap: A statistical method. In P. PetersonE. BakerB. McGawEds., International encyclopedia for education (3rd ed.). Burlington: Elsevier Science. First citation in articleGoogle Scholar

  • Snyder, L. (2001). The lived experience of Alzheimer’s: Understanding the feelings and subjective accounts of persons with the disease. Alzheimer’s Care Today, 2(2), 8–22. First citation in articleGoogle Scholar

  • Snyder, L., Jenkins, C., & Joosten, L. (2007). Effectiveness of support groups for people with mild to moderate Alzheimer’s disease: An evaluated survey. American Journal of Alzheimer’s Disease, 22, 14–19. https://doi.org/10.1177/1533317506295857 First citation in articleCrossref, Google Scholar

  • Sørensen, L., Waldorff, F., & Waldemar, G. (2008). Coping with mild Alzheimer’s disease. Dementia, 7, 287–299. https://doi.org/10.1177/1471301208093285 First citation in articleCrossref, Google Scholar

  • Stechl, E., Lämmler, G., Steinhagen-Thiessen, E., & Flick, U. (2007). Subjektive Wahrnehmung und Bewältigung der Demenz im Frühstadium – SUWADEM [Subjective perception of and coping with early-stage dementia] (own translation). Zeitschrift für Gerontologie und Geriatrie, 40, 71–80. https://doi.org/10.1007/s00391-007-0434-6 First citation in articleCrossref, Google Scholar

  • Teri, L. (1996). Depression in Alzheimer’s disease. In M. HersenV. B. Van HasseltEds., Psychological treatment of older adults. Boston, MA: Springer. First citation in articleGoogle Scholar

  • Thompson, S. C., & Sobolew-Shubin, A. (1993). Perceptions of overprotection in ill adults. Journal of Applied Social Psychology, 23, 85–97. https://doi.org/10.1111/j.1559-1816.1993.tb01053.x First citation in articleCrossref, Google Scholar

  • Thompson, S. C., & Sobolew-Shubin, A. (2006). Perceptions of overprotection in ill adults. Journal of Applied Social Psychology, 23, 85–97. https://doi.org/10.1111/j.1559-1816.1993.tb01053.x First citation in articleCrossref, Google Scholar

  • Van’t Leven, A., Prick, A.-E. J. C., Groenwoud, J. G., Roelofs, P. D. D. M., De Lange, J., & Pot, A. M. (2013). Dyadic interventions for community-dwelling people with dementia and their family caregivers: A systematic review. International Psychogeriatrics, 25, 1581–1603. https://doi.org/10.1017/S1041610213000860 First citation in articleCrossref, Google Scholar

  • WHOQOL Group. (1993). Study protocol for the World Health Organization project to develop a quality of life assessment instrument (WHOQOL). Quality of Life Research, 2, 153–159. https://doi.org/10.1007/BF00435734 First citation in articleCrossref, Google Scholar

  • Wilson, R. S., Boyle, P., Segawa, E., Yu, L., Begeny, C., Anagnos, S., & Bennett, D. A. (2013). The influence of cognitive decline on well-being in old age. Psychology and Aging, 28(2), 304–313. https://doi.org/10.1037/a0031196 First citation in articleCrossref, Google Scholar

  • Woods, B., Aguirre, E., Spector, A. E., & Orrell, M. (2012). Cognitive stimulation to improve cognitive functioning in people with dementia. The Cochrane Database of Systematic Reviews, 15, https://doi.org/10.1002/14651858.CD005562.pub2 First citation in articleGoogle Scholar

  • Wulff, I., Kölzsch, M., Kalinowski, S., Kopke, K., Fischer, T., Kreutz, R., & Dräger, D. (2013). Perceived enactment of autonomy of nursing home residents: A German cross-sectional study. Nursing and Health Sciences, 15, 186–193. https://doi.org/10.1111/nhs.12016 First citation in articleCrossref, Google Scholar

  • Zank, S., & Schacke, C. (2007). Längsschnittstudie zur Belastung pflegender Angehöriger von demenziell Erkrankten (LEANDER) [Longitudinal study on the burden of informal caregivers of people with dementia] (own translation). Zeitschrift für Gerontopsychologie und -psychiatrie, 20, 239–255. https://doi.org/10.1024/1011-6877.20.4.239 First citation in articleLink, Google Scholar