Hostname: page-component-78c5997874-j824f Total loading time: 0 Render date: 2024-11-19T04:19:07.677Z Has data issue: false hasContentIssue false
  • English
  • Français

The process of family-centered counseling for caregivers of persons with dementia: barriers, facilitators and benefits

Published online by Cambridge University Press:  15 March 2010

Myrra Vernooij-Dassen ,
Karlijn Joling ,
Hein van Hout  and
Mary Sherman Mittelman
Myrra Vernooij-Dassen*
Affiliation:
Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands
Karlijn Joling
Affiliation:
VU University medical Center, EMGO-Institute, Department of General Practice, Amsterdam, The Netherlands
Hein van Hout
Affiliation:
VU University medical Center, EMGO-Institute, Department of General Practice, Amsterdam, The Netherlands
Mary Sherman Mittelman
Affiliation:
Department of Psychiatry, New York University Langone School of Medicine, New York, U.S.A.
*
Correspondence should be addressed to: Prof. Dr. M. Vernooij-Dassen, Kalorama Foundation and Radboud University Nijmegen Medical Centre, P.O. Box 9101, 114 IQ Healthcare, 6500 HB Nijmegen, The Netherlands. Phone: +31 24-3666265; Fax: +31 243540166. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background: Despite the high consistency of evidence in favor of person-centered care, little information is available on how person-centered and family-centered interventions are actually provided. The aim of this study is to gain insight into the provision of the effective New York University Caregiver Intervention (NYUCI) in order to enhance its implementation.

Methods: This is a qualitative study using a grounded theory approach. Group interviews were carried out with three purposefully sampled counselors who had provided the NYUCI.

Results: Six themes were identified: (1) family problems, (2) ways to deal with these family problems, (3) barriers encountered by counselors,(4) ways to deal with these barriers, (5) facilitators or rewards of being a counselor, and (6) perceived effectiveness.

The problem categories were (a) conflicts within families; (b) past experiences and personality; and (c) daily living with dementia. Ways of helping caregivers deal with these problems included problem clarification from the perspectives of the key players. An important barrier was reluctance to be helped. This was dealt with by acknowledging caregivers’ need for control over situations. Additional effects of participation in the NYUCI observed by the counselors were reduction of anger and awareness of more and new options for dealing with dementia.

Conclusions: Person- or family-centered care offers new perspectives on problems that are seemingly unmanageable. We hypothesize that seeing new and more options is a direct effect of this person-centered counseling. This might be an important outcome to be measured in future studies.

Keywords

qualitative researchcounselingfamily centered CAREpsychosocial interventiondementia
Type
Research Article
Information
International Psychogeriatrics , Volume 22 , Issue 5 , August 2010 , pp. 769 - 777
Copyright
Copyright © International Psychogeriatric Association 2010

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

APA Work Group on Alzheimer's Disease and Other Dementias, Rabins, P. V. et al. (2007). American Psychiatric Association practice guideline for the treatment of patients with Alzheimer's disease and other dementias, 2nd edition. American Journal of Psychiatry, 164 (Suppl.), 55–56.Google Scholar
Ayalon, L., Gum, A. M., Feliciano, L. and Arean, P. A. (2006). Effectiveness of nonpharmacological interventions for the management of neuropsychiatric symptoms in patients with dementia: a systematic review. Archives Internal Medicine, 166, 2182–218.CrossRefGoogle ScholarPubMed
Bengtson, V. L. and Kuypers, J. (1985). The family support cycle: psychosocial issues in the aging family. In Munnichs, J. M. A, Olbrich, E. and Mussen, P. (eds.), Life-Span and Change in a Gerontological Perspective (pp. 257–273). New York: Academic Press.CrossRefGoogle Scholar
Black, B. S. and Rabins, P. V. (2007). Qualitative research in psychogeriatrics. International Psychogeriatrics, 19, 167–173.CrossRefGoogle ScholarPubMed
Bolger, N. and Amarel, D. (2007). Effects of social support visibility on adjustment to stress: experimental evidence. Journal of Personality and Social Psychology, 92, 458–475.CrossRefGoogle ScholarPubMed
Brodaty, H., Green, A. and Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51, 657–664.CrossRefGoogle ScholarPubMed
Brodaty, H., Thomson, C., Thompson, C. and Fine, M. (2005). Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry, 20, 537–546.CrossRefGoogle ScholarPubMed
Corbin, J. and Strauss, M. (1990). Grounded theory research: procedures, canons, and evaluative criteria. Qualitative Sociology, 13, 3–21.CrossRefGoogle Scholar
Drentea, P., Clay, O. J., Roth, D. L., Mittelman, M. S. (2006). Predictors of improvement in social support: five-year effects of a structured intervention for caregivers of spouses with Alzheimer's disease. Social Science and Medicine, 63, 957–967.CrossRefGoogle ScholarPubMed
Graff, M. J., Vernooij-Dassen, M. J., Thijssen, M., Dekker, J., Hoefnagels, W. H. and Rikkert, M. G. (2006). Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial. BMJ, 333, 1196.CrossRefGoogle ScholarPubMed
Graff, M. J., Vernooij-Dassen, M. J., Thijssen, M., Dekker, J., Hoefnagels, W. H. and Olderikkert, M. G. (2007). Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomized controlled trial. Journals of Gerontology, Series A: Biological Sciences and Medical Sciences, 62, 1002–1009.CrossRefGoogle ScholarPubMed
Graff, M. J. et al. (2008). Community occupational therapy for older patients with dementia and their care givers: cost effectiveness study. BMJ, 336, 134–138.CrossRefGoogle ScholarPubMed
Gruenberg, E. M. (1967). The social breakdown syndrome: some origins. American Journal of Psychiatry, 123, 1481–1489.CrossRefGoogle ScholarPubMed
Hulscher, M. E., Laurant, M. G. and Grol, R. P. (2003). Process evaluation on quality improvement interventions. Quality and Safety in Health Care, 12, 40–46.CrossRefGoogle ScholarPubMed
Joling, K. J. et al. (2008). (Cost)-effectiveness of family meetings on indicated prevention of anxiety and depressive symptoms and disorders of primary family caregivers of patients with dementia: design of a randomized controlled trial. BMC Geriatrics, 8, 2.CrossRefGoogle ScholarPubMed
Lewin, S., Glenton, C. and Oxman, A. D. (2009). Use of qualitative methods alongside randomised controlled trials of complex healthcare interventions: methodological study. BMJ, 339, b3496.CrossRefGoogle ScholarPubMed
Livingston, G., Johnston, K., Katona, C. and Lyketsos, C. G. (2005). Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia. The American Journal of Psychiatry, 162, 1996–2021.CrossRefGoogle Scholar
Mittelman, M. S. et al. (1995). A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Gerontologist, 35, 792–802.CrossRefGoogle ScholarPubMed
Mittelman, M. S., Ferris, S. H., Shulman, E., Steinberg, G. and Levin, B. (1996). A family intervention to delay nursing home placement of patients with Alzheimer disease: a randomized controlled trial. JAMA, 276, 1725–1731.CrossRefGoogle ScholarPubMed
Mittelman, M. S., Epstein, C. and Pierzchala, A. (2003). Counseling the Alzheimer's Caregiver: A Resource for Health Care Professionals. Chicago: AMA Press.Google Scholar
Mittelman, M. S., Roth, D. L., Coon, D. W. and Haley, W. E. (2004a). Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer's disease. American Journal of Psychiatry, 161, 850–856.CrossRefGoogle ScholarPubMed
Mittelman, M. S., Roth, D. L., Haley, W. E and Zarit, S. H. (2004b). Effects of a caregiver intervention on negative caregiver appraisals of behavior problems in patients with Alzheimer's disease: Results of a randomized trial. Journals of Gerontology, Psychological Sciences, 59B, 27–34.CrossRefGoogle Scholar
Mittelman, M. S., Haley, W. E., Clay, O. J. and Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, 67, 1592–1599.CrossRefGoogle ScholarPubMed
Mittelman, M. S., Roth, D. L., Clay, O. J. and Haley, W. E. (2007). Preserving health of Alzheimer's caregivers: impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry, 15, 780–789.CrossRefGoogle ScholarPubMed
O'Connor, D. W., Ames, D., Gardner, B. and King, M. (2009). Psychosocial treatments of behavior symptoms in dementia: a systematic review of reports meeting quality standards. International Psychogeriatrics, 21, 225–240.CrossRefGoogle ScholarPubMed
Roth, D. R., Mittelman, M. S., Clay, O. J., Madan, A. and Haley, W. E. (2005). Changes in social support as mediators of the impact of a psychosocial intervention for spouse caregivers of persons with Alzheimer's disease. Psychology and Aging, 20, 634–644.CrossRefGoogle ScholarPubMed
Spijker, A., et al. (2008). Effectiveness of nonpharmacological interventions in delaying the institutionalization of patients with dementia: a meta-analysis. Journal of the American Geriatrics Society, 56, 1116–1128.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M., Lamers, C., Bor, J., Felling, A. and Grol, R. (2000). Prognostic factors of effectiveness of a support program for caregivers of dementia patients. International Journal of Aging and Human Development, 51, 259–274.CrossRefGoogle ScholarPubMed
Zarit, S. H. and Zarit, J. M. (1986) Dementia and the family: a stress management approach. Clinical Psychologist, 39, 103–105.Google Scholar