Self-Management of Caregivers

  • Yung-Jen Yang
  • Marja Saarenheimo
  • Ulla Eloniemi-Sulkava
  • Kaisu Pitkälä


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  1. Aneshensel CS, Pearlin LI, Schuler RH (1993) Stress, role captivity, and the cessation of caregiving. J Health Soc Behav 34: 54–70PubMedCrossRefGoogle Scholar
  2. Beeson R, Horton-Deutsch S, Farran C, Neundorfer M (2000) Loneliness and depression in caregivers of persons with Alzheimer’s disease or related disorders. Issues Ment Health Nurs 21: 779–806PubMedCrossRefGoogle Scholar
  3. Brodaty H, Luscombe G (1998) Psychological morbidity in caregivers is associated with depression in patients with dementia. Alzheimer Dis Assoc Disord 12: 62–70PubMedCrossRefGoogle Scholar
  4. Carpentier N, Ducharme F (2005) Support network transformations in the first stages of the caregiver’s career. Q Health Res 15: 289–311CrossRefGoogle Scholar
  5. Cohen CA, Colantonio A et al. (2002) Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriatr Psychiatry 17: 184–188PubMedCrossRefGoogle Scholar
  6. Cohen-Mansfield J, Parpura-Gill A, Golander H (2006) Salience of self-identity roles in persons with dementia: differences in perceptions among elderly persons, family members and caregivers. Soc Sci Med 62: 745–757PubMedCrossRefGoogle Scholar
  7. Davies S, Nolan M (2006) ‘Making it better’: self-perceived roles of family caregivers of older people living in care homes: a qualitative study. Int J Nurs Studies 43: 281–291CrossRefGoogle Scholar
  8. de Geest G (2003) The relation between the perceived role of family and the behavior of the person with dementia. Am J Alzheimer’s Dis Other Dementias 18: 181–187CrossRefGoogle Scholar
  9. Dening T, Lawton C (1998) The role of carers in evaluating mental health services for older people. Int J Geriatr Psychiatry 13: 863–870PubMedCrossRefGoogle Scholar
  10. Edward AB, Zarit SH, Stephens MA, Townsend A (2002) Employed family caregivers of cognitively impaired elderly: an examination of role strain and depressive symptoms. Aging & Mental Health 6: 55–61CrossRefGoogle Scholar
  11. Everett D (1999) Forget me not: the spiritual care of people with Alzheimer’s Disease. J Health Care Chaplaincy 8: 77–88CrossRefGoogle Scholar
  12. Hepburn KW, Tornatore J, Center B, Ostwald SW (2001) Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes. J Am Geriatr Soc 49: 450–457PubMedCrossRefGoogle Scholar
  13. Koffman J, Taylor S (1997) The needs of caregivers. Elderly Care 9: 16–19PubMedGoogle Scholar
  14. Kovach CR, Noonan PE, Schlidt AM, Wells T (2005) A model of consequences of need-driven, dementia-compromised behavior. J Nurs Scholarship 37: 134–140CrossRefGoogle Scholar
  15. Mahoney DF (2003) Vigilance. Evolution and definition for caregivers of family members with Alzheimer’s disease. J Gerontol Nurs 29: 24–30PubMedGoogle Scholar
  16. Markwick M, Reece M, Battersby MW (2002) Chronic disease self-management education in indigenous settings. Sharing Health Care Initiatives — Early Wins Workshop, Hobart, Commonwealth Department of Health & AgeingGoogle Scholar
  17. Markwick M, Reece M, Battersby MW (2002) Chronic disease self-management in indigenous communities. Early Wins Conference, TasmaniaGoogle Scholar
  18. Markwick M, Reece M, Battersby MW (2002) The development and implementation of a generic assessment tool in chronic disease self-management. Health Outcomes 2002: Current Challenges and Future Frontiers, CanberraGoogle Scholar
  19. Martin Y, Gilbert P, McEwan K, Irons C (2006) The relation of entrapment, shame and guilt to depression, in carers of people with dementia. Aging & Mental Health 10: 101–106CrossRefGoogle Scholar
  20. Mundt JC, Kaplan DA, Greist JH (2001) Meeting the need for public education about dementia. Alzheimer Dis Assoc Disord 15: 26–30PubMedCrossRefGoogle Scholar
  21. O’Gorman ML (2002) Spiritual care at the end of life. Crit Care Nurs Clin N Am 14: 171–176CrossRefGoogle Scholar
  22. O’Rourke N, Cappeliez P, Neufeld E (2007) Recurrent depressive symptomatology and physical health: a 10-year study of informal caregivers of persons with dementia. Can J Psychiatry 52: 434–441PubMedGoogle Scholar
  23. Stolley JM, Koenig H, Buckwalter KC (1999) Pastoral care for the person with dernentia. J Health Care Chaplaincy 8: 7–23CrossRefGoogle Scholar
  24. Tompkins C, Sorrell JM (2008) Older adults with Alzheimer’s disease in a faith community. J of Psychosoc Nurs Mental Health Services 46: 22–25CrossRefGoogle Scholar
  25. Tweedy MP, Guarnaccia CA (2007) Change in depression of spousal caregivers of dementia patients following patient’s death. Omega-J Death Dying 56: 217–228CrossRefGoogle Scholar
  26. van der Roest HG, Meiland FJ, Maroccini R et al. (2007) Subjective needs of people with dernentia: a review of the literature. Int Psychogeriatr 19: 559–592PubMedCrossRefGoogle Scholar
  27. Victoroff J, Mack WJ, Nielson KA (1998) Psychiatric complications of dementia: impact on caregivers. Dement Geriatr Cogn Disord 9: 50–55PubMedCrossRefGoogle Scholar
  28. Zarit S, Femia E (2008) Behavioral and psychosocial interventions for family caregivers. Am J Nurs 108 (Suppl): 47–53PubMedGoogle Scholar


  1. Albert SM (1990) The dependent elderly, home health care, and strategies of household adaptation. In: Gubrium J, Shankar A (eds) The home care experience: Ethnography and policy. Sage Publications, Newbury Park, CA, pp 19–36Google Scholar
  2. Antonovsky A (1985) Health, stress, and coping. Jossey Bass, San Francisco, CAGoogle Scholar
  3. Bodenheimer T, Lorig K, Holman H, Grumbach K (2002) Patient self-management of chronic disease in primary care. JAMA 19: 2469–2475CrossRefGoogle Scholar
  4. Brodaty H, McGilchrist C, Harris L, Peters KE (1993) Time until institutionalization and death in patients with dementia. Arch Neurol 50: 643–650PubMedGoogle Scholar
  5. Brodaty H, Gresham M (1989) Effect of a training programme to reduce stress in carers of patients with dementia. Br Med J 299: 1375–1379CrossRefGoogle Scholar
  6. Clark PG (1989) The philosophical foundations of empowerment. J Health Aging 3: 267–285CrossRefGoogle Scholar
  7. Cohen CA, Gold DP, Schulman KI, Zucchero CA (1994) Positive aspects in caregiving: an overlooked variable in research. Can J Aging 378–391Google Scholar
  8. Coleman MT, Newton KS (2005) Supporting self-management in patients with chronic illness. Am Fam Physician 8: 1503–1510Google Scholar
  9. Connor KI, McNeese-Smith DK, Vickrey BG, van Servellen GM, Chang BL, Lee ML, Vassar SD, Chodosh J (2008) Determining care management activities associated with mastery and relationship strain for dementia caregivers. J Am Geriatr Soc 56: 891–897PubMedCrossRefGoogle Scholar
  10. Dello Buono M, Busato R, Mazzetto M et al. (1999) Community care for patients with Alzheimer’s disease and non-demented elderly people: use and satisfaction with services and unmet needs in family caregivers. Int J Geriatr Psychiatry 14: 915–924PubMedCrossRefGoogle Scholar
  11. Eloniemi-Sulkava U, Saarenheimo M, Laakkonen ML, Savikko N, Kautiainen H, Tilvis RS, Pitkälä KH (2009) Family care as collaboration: effectiveness of a multi-component support program for elderly couples with dementia. Randomized controlled intervention study (submitted)Google Scholar
  12. Farran CJ (1997) Theoretical perspectives concerning positive aspects of caring for elderly persons with dementia: stress adaptation and existentialism. Gerontologist 37: 250–256PubMedGoogle Scholar
  13. Gibson CH (1991) A concept analysis of empowerment. J Adv Nurs 16: 354–361PubMedCrossRefGoogle Scholar
  14. Gonzalez VM, Goeppinger J, Lorig K (1990) Four psychosocial theories and their application to patient education and clinical practice. Arthritis Care Res 3: 132–143PubMedGoogle Scholar
  15. Heyn P, Abreu BC, Ottenbacher KJ (2004) The effects of exercise training on elderly persons with cognitive impairment and dementia: a meta-analysis. Arch Phys Med Rehabil 85: 1694–1704PubMedCrossRefGoogle Scholar
  16. Huusko TM, Karppi P, Avikainen V et al. (2000) Randomised, clinically controlled trial of intensive geriatric rehabilitation in patients with hip fracture: subgroup analysis of patients with dementia. BMJ 321: 1107–1111PubMedCrossRefGoogle Scholar
  17. Lazarus RS, Folkman S (1984) Stress, appraisal, and coping. Springer, New YorkGoogle Scholar
  18. Kramer B (1997) Gain in the caregiving experience: Where are we? What next? Gerontologist 37: 218–232PubMedGoogle Scholar
  19. Levin-Zamir D, Peterburg Y (2001) Health literacy in health systems: perspectives on patient self-management in Israel. Health Promotion Int 1: 87–94CrossRefGoogle Scholar
  20. Lorig KR, Holman H (2003) Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med 1: 1–7CrossRefGoogle Scholar
  21. McCall ME, Heumann LF, Boldy DP (2001) Empowerment: definitions, applications, problems, and prospects. In: Teoksessa: Heumann LF, McCall ME, Boldy DP (eds) Empowering frail elderly people. Opportunities and impediments in housing, health, and support service delivery. Praeger, Westport, Connecticut, pp 3–24Google Scholar
  22. Meiland FJM, Danse JAC, Wendte JF, Klazinga NS, Gunning-Schepers LJ (2001) Caring for relatives with dementiacaregiver experiences of relatives of patients on the waiting list for admission to a psychogeriatric nursing home in the Netherlands. Scand J Public Health 29: 113–121PubMedCrossRefGoogle Scholar
  23. Mittelman MS, Ferris SH, Shulman E et al. (1996) A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial. JAMA 276: 1725–1731PubMedCrossRefGoogle Scholar
  24. Nankervis J, Schofield H, Herrman H et al. (1997) Home-based assessment for family carers: a preventative strategy to identify and meet service needs. Int J Geriatr Psychiatry 12: 193–201PubMedCrossRefGoogle Scholar
  25. Neundorfer NN (1991) Coping and health outcomes in spouse caregivers of persons with dementia. Nurs Res 40: 260–265PubMedCrossRefGoogle Scholar
  26. Pot AM, Deeg DJ, Knipscheer CP (2001) Institutionalization of demented elderly: the role of caregiver characteristics. Int J Geriatr Psychiatry 16: 273–280PubMedCrossRefGoogle Scholar
  27. Raivio M, Eloniemi-Sulkava U, Laakkonen ML et al. (2007) How do officially organized services meet the needs of elderly caregivers and their spouses with Alzheimer’s disease? Am J Alzheimers Dis Other Demen 22: 360–368PubMedCrossRefGoogle Scholar
  28. Rappaport J, Swift C, Hess R (1984) Studies in empowerment. Steps toward understanding and action. Haworth Press, New YorkGoogle Scholar
  29. Rappaport J (1987) Terms of empowerment/exemplars of prevention: Toward a theory for community psychology. Am J Community Psychol 15: 121–128CrossRefGoogle Scholar
  30. Saarenheimo M, Nikula S, Eskola P (2007) Exploring the borderlines of family caregiving in Finland. In: Paoletti I (ed) Family caregiving for older disabled people: relational and institutional issues. Nova Science Publishers, New York, pp 333–357Google Scholar
  31. Schulz R, O’Brien AT, Bookwala J et al. (1995) Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. 1995; 35: 771–791Google Scholar
  32. Stuck AE, Siu AL, Wieland GD et al. (1993) Comprehensive geriatric assessment: a meta-analysis of controlled trials. Lancet 342: 1032–1036PubMedCrossRefGoogle Scholar
  33. Teri L, Gibbons LE, McCurry SM et al. (2003) Exercise plus behavioral management in patients with Alzheimer disease: a randomized controlled trial. JAMA 290: 2015–2022PubMedCrossRefGoogle Scholar
  34. Toseland RW, Smith G, McCallion P (2001) Family caregivers of the frail elderly. In: Gitterman A (ed) Handbook of social work with vulnerable and resilient populations. Columbia University Press, New YorkGoogle Scholar
  35. Walsh F (1996) The concept of family resilience: crisis and challenge. Fam Process 3: 261–281CrossRefGoogle Scholar
  36. Vernooij-Dassen M, Felling A, Persoon J (1997) Predictors of change and continuity in home care for dementia patients. Int J Geriatr Psychiatry 12: 671–677PubMedCrossRefGoogle Scholar
  37. Vitaliano PP, Zhang J, Scanlan JM (2003) Is caregiving hazardous to one’s physical health? A Meta-analysis. Psychol Bull 129: 946–972PubMedCrossRefGoogle Scholar

Copyright information

© Springer Medizin Verlag Heidelberg 2009

Authors and Affiliations

  • Yung-Jen Yang
    • 1
  • Marja Saarenheimo
    • 2
  • Ulla Eloniemi-Sulkava
    • 2
  • Kaisu Pitkälä
    • 3
  1. 1.Department of Adult PsychiatryTsao-Tun Psychiatric CenterNan-Tou CountyTaiwan
  2. 2.The Central Union for the Welfare of the AgedHelsinkiFinland
  3. 3.Department of General Practice and Primary Health CareUniversity of HelsinkiHelsinkiFinland

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