Hostname: page-component-8448b6f56d-t5pn6 Total loading time: 0 Render date: 2024-04-23T10:05:50.665Z Has data issue: false hasContentIssue false

Recovery from burden: informal caregiver profiles that predict treatment success

Published online by Cambridge University Press:  19 June 2018

Jacqueline van der Lee*
Affiliation:
Geriatric Centre ‘DrieMaasStede’, Argos Zorggroep, Schiedam, and Department of Nursing Home Medicine, Amsterdam Public Health Research Institute, VU University Medical Centre, Amsterdam, the Netherlands
Ton J. E. M. Bakker
Affiliation:
University of Applied Science, and Stichting Wetenschap Balans (Foundation for Scientific Research Geriatric Health Care), Rotterdam, the Netherlands
Rose-Marie Dröes
Affiliation:
Department of Psychiatry, Amsterdam Public Health Research Institute, VU University Medical Centre, and GGZ inGeest, Amsterdam, the Netherlands
*
Correspondence should be addressed to: Jacqueline van der Lee, Geriatric Centre ‘DrieMaasStede’, Argos Zorggroep, Voorberghlaan 35, 3123 AX Schiedam (or P.O. Box 4023, 3102 GA Schiedam), the Netherlands. Fax: +31-10-4719379. Email: j.vanderlee@argoszorggroep.nl.

Abstract

Background:

Neuropsychiatric symptoms (NPI) of dementia are important determinants of caregiver burden, while caregiver coping styles and competences can relieve burden. Caregivers differ in coping with the demands made on them and in experienced burden. What changes in caregivers explain recovery from burden, and which caregiver characteristics predict recovery from burden over time, and does treatment make a difference?

Methods:

This study into recovery from burden was a secondary analysis of data collected in a formerly conducted randomized controlled trial (RCT) on the integrated reactivation and rehabilitation (IRR) programme in a psychiatric-skilled nursing home, compared to usual care (UC; i.e. day care, assisted living arrangements, and nursing home wards). For this secondary analysis, longitudinal data on persons with dementia and caregivers were used from baseline (T1), end of treatment (T2), and at nine months (T3).

Results:

Caregivers with an improved sense of competence (SCS) who care for persons with dementia with a decreased severity of NPI have the highest chance of recovering from burden (CSI). Caregivers with a tendency to feel involved with others and sympathize with others (affiliation, ICL-R) have a slightly lower probability of improvement with respect to their sense of competence in the short term. The number of improved caregivers was higher in IRR than UC.

Conclusion:

Recovery depends on both an improved sense of competence and a decreased severity of NPI. Combined interventions that address both NPI and focus on enhancing caregiver's sense of competence have added value when it comes to decreasing caregiver burden.

Type
Original Research Article
Copyright
Copyright © International Psychogeriatric Association 2018 

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

Alzheimer's Disease International. World Alzheimer Report 2015. London, UK: Author.Google Scholar
Andrèn, S. and Elmstahl, S. (2007). Relationships between income, subjective health and caregiver burden in caregivers of people with dementia in group living care: a cross-sectional community-based study. International Journal of Nursing Studies, 44, 435446.Google Scholar
Bakker, T. J. E. M., Duivenvoorden, H. J., van der Lee, J., Olde Rikkert, M., Beekman, A. T. F. and Ribbe, M. W. (2011a). Integrative psychotherapeutic nursing home program to reduce multiple neuropsychiatric symptoms of cognitively impaired patients and caregiver burden. A randomized controlled trial. American Journal of Geriatric Psychiatry, 19, 507520.Google Scholar
Bakker, T. J. E. M., Duivenvoorden, H. J., van der Lee, J., Olde Rikkert, M., Beekman, A. T. F. and Ribbe, M. W. (2011b). Prognostic factors for a favourable long-term outcome from an integratvie psychotherapeutic nursing home programme. Dementia & Geriatric Cognitive Disorders, 32, 318331.Google Scholar
Bergvall, N. et al. (2011). Relative importance of patient disease indicators on informal care and caregiver burden in Alzheimer's disease. International Psychogeriatrics, 23, 7385.Google Scholar
Black, W. and Almeida, O. P. (2004). A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. International Psychogeriatrics, 16, 295315.Google Scholar
Boszormenyi-Nagy, I. and Spark, G. M. (1973). Invisible Loyalties. Reciprocity in Intergenerational Family Therapy. New York: Brunner/Mazel.Google Scholar
Bruvik, F. K., Ulstein, I. D., Ranhoff, A. H. and Engedal, K. (2013). The effect of coping on the burden in family carers of persons with dementia. Aging & Mental Health, 17, 973978.Google Scholar
Busschbach, J., van McDonnell, J., Essink-Bot, M.-L. and van Hout, B. (1999). Estimating parametric relationships between health description and health valuation with an application to the EuroQol EQ-5D. Journal of Health Economics, 18, 551571.Google Scholar
Coen, R. F., Swanwick, G. R., O'Boyle, C. A. and Coakley, D. (1997). Behaviour disturbance and other predictors of carer burden in Alzheimer's disease. International Journal of Geriatric Psychiatry, 12, 331336.Google Scholar
Cummings, J. L., Koumaras, B., Chen, M. and Mirski, D. (2005). Rivastigmine nursing home study team. Effects of rivastigmine treatment on the neuropsychiatric and behavioral disturbances of nursing home residents with moderate to severe probable Alzheimer's disease: a 26-week, multicenter, open-label study. American Journal of Geriatric Pharmacotherapy, 3, 137148.Google Scholar
Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S, Carusi, D. A. and Gornbein, J. l. (1994). The neuropsychiatric inventory, comprehensive assessment of psychopathology in dementia. Neurology, 44, 23082314.Google Scholar
De Haan, R., Limburg, M., Schuling, J., Broeshart, J., Jonkers, L. and Van Zuylen, P. (1993). Clinimetric evaluation of the Barthel Index, a measure of limitations in daily activities. [article in Dutch]. Nederland Tijdschrift voor Geneeskunde, 137, 917921.Google Scholar
De Jong, C. A. J. and Jacobs, P. (2010). Interpersonal self-perception and memories on parental rearing in alcohol dependent patients and outpatient controls. The Open Addiction Journal, 3, 4349.Google Scholar
De Jong, C. A. J., Van den Brink, W. and Jansma, A. (2000). ICL-R: manual for the revised Dutch version of the interpersonal checklist (ICL). In Handleiding Bij de Vernieuwde Nederlandse Versie van de Interpersonal Checklist (ICL). Sint Oedenrode: Novadic.Google Scholar
De Jonghe, J. F., Kat, M. G., Kalisvaart, C. J. and Boelaarts, L. (2003). Neuropsychiatric inventory questionnaire (NPI-Q): a validity study of the Dutch form. Tijdschrift voor Gerontolologie en Geriatrie, 32, 7477.Google Scholar
Dröes, R. M., Breebaart, E., Meiland, F. J., van Tilburg, W. and Mellenbergh, G. J. (2004). Effect of meeting centres support program on feelings of competence of family carers and delay of institutionalization of people with dementia. Aging & Mental Health, 8, 201211.Google Scholar
Dröes, R. M., Lindeman, E. M., Breebaart, E. and van Tilburg, W. (1996). Determinants of burden in informal caregivers of people with dementia. [Determinanten van belasting van verzorgers van mensen die lijden aan dementie. (in Dutch)]. In Dröes, R. M. (ed.), Amsterdam Meeting Centres. A New Type of Support for People with Dementia and their Caregivers. [Amsterdamse Ontmoetingscentra. Een Nieuwe Vorm van Ondersteuning Voor Dementerende Mensen en Hun Verzorgers. Eindrapport.] (pp. 89–118). Amsterdam: Thesis Publishers.Google Scholar
Dröes, R. M., Meiland, F. J., Schmitz, M. J. and van Tilburg, W. (2006). Effect of the meeting centres support program on informal carers of people with dementia: results from a multi-centre study. Aging & Mental Health, 10, 112124.Google Scholar
EuroQol Group (1990). EuroQol – a new facility for measurement of health-related quality of life. Health Policy, 16, 199208.Google Scholar
Exel, N. J. van Scholte op Reimer, W. J., Brouwer, W. B., van den Berg, B., Koopmanschap, M. A., and van den Bos, G. A. (2004). Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden. Clinical Rehabilitation, 18, 203214.Google Scholar
Folstein, M. F., Folstein, S. E. and 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, 189198.Google Scholar
Gallant, M. P. and Connell, C. M. (1998). The stress process among dementia spouse caregivers: are caregivers at risk for negative health behavior change? Research on Aging, 20, 267297.Google Scholar
Gaugler, J. E., Davey, A., Pearlin, L. I. and Zarit, S. H. (2000). Modeling caregiver adaptation over time: the longitudinal impact of behavior problems. Psychology and Aging, 15, 437450.Google Scholar
Haley, W. E., Levine, E. G., Brown, S. L. and Bartolucci, A. A. (1987). Stress, appraisal, coping and social support as predictors of adaptational outcome among dementia caregivers. Psychology and Aging, 2, 323330.Google Scholar
Jansen, A. P. D. et al. (2007). Sense of competence questionnaire among informal caregivers of older adults with dementia symptoms: a psychometric evaluation. Clinical Practice Epidemiology in Mental Health, 3, 11.Google Scholar
Kat, M. G., De Jonghe, J. F., Aalten, P., Kalisvaart, C. J., Droës, R. M. and Verhey, F.R. (2002). Neuropsychiatric symptoms of dementia: psychometric aspects of the Dutch Neuropsychiatric Inventory (NPI) [Neuropsychiatrische symptomen bij dementie: psychometrische aspecten van de Nederlandse Neuropsychiatric Inventory (NPI)] (article in Dutch). Tijdschrift voor Gerontologie en Geriatrie, 33, 150155.Google Scholar
King, T. Jr, Tsevat, J. and Roberts, M. S. (2009). Measuring preference-based quality of life using the EuroQol EQ-5D in patients with cerebral aneurysms. Neurosurgery, 65, 565–572.Google Scholar
LaForge, R. and Suczek, R. F. (1955). The interpersonal dimension of personality: III: an interpersonal checklist. Journal of Personality Assessment, 24, 94112.Google Scholar
Lazarus, R. S. and Folkman, S. (1984), Stress, Appraisal, and Coping, New York: Springer.Google Scholar
van der Lee, J., Bakker, T. J. E. M., Duivenvoorden, H. J. and Dröes, R. M. (2014). Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing Research Reviews, 15, 7693Google Scholar
van der Lee, J., Bakker, T. J. E. M., Duivenvoorden, H. J. and Dröes, R. M. (2017). Do determinants of burden in dementia caregivers change over time? Aging & Mental Health, 21, 232240.Google Scholar
Lutzky, S. M. and Knight, B. G. (1994). Explaining gender differences in caregiver distress. The roles of emotional attentiveness and coping styles. Psychology and Aging, 9, 513519.Google Scholar
Meiland, F. J. M., Kat, M. G., van Tilburg, W., Jonker, C. and Dröes, R. M. (2005). The emotional impact of psychiatric symptoms on partner caregivers: do caregiver, patient, and situation characteristics make a difference? Alzheimers Disease and Associated Disorders, 19, 195201.Google Scholar
Mitrani, V. B. and Czaja, S. J. (2000). Family-based therapy for dementia caregivers: clinical observations. Aging & Mental Health, 4, 200209.Google Scholar
Mittelman, A. (2012). Psychosocial interventions to address the emotional needs of caregivers of individuals with Alzheimer's disease. In Zarit, S. H. and Talley, R. C. (eds.), Caregiving for Alzheimer's Disease and Related Disorders: Research, Practice, Policy (pp. 1734). New York: Springer Science & Business Media.Google Scholar
Mittelman, M., Haley, W. E., Clay, O. and Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, 67, 15921599.Google Scholar
Norman, G. R., Sloan, J. A. and Wyrwich, K. W. (2003). Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Medical Care, 41, 582592.Google Scholar
Papastavrou, E., Tsangari, H., Karayiannis, G., Papacostas, S., Efstathiou, G., and Sourtzi, P. (2011). Caring and coping: the dementia caregivers. Aging & Mental Health, 15, 702711.Google Scholar
Peeters, J. M., Werkman, W. and Francke, A. L. (2014). Mantelzorgers over ondersteuning bij dementie door het sociale netwerk en de gemeente. Dementiemonitor Mantelzorg 2013, Deelrapportage 2. [Dementia caregiver's report about support given by their social network and the community. Dementia Care Monitor 2013 Interim report 2.] (Report in Dutch). Nivel and Alzheimer Nederland.Google Scholar
Pickard, A. S., Neary, M. P. and Cella, D. (2007). Estimation of minimally important differences in EQ-5D utility and VAS scores in cancer. Health and Quality of Life Outcomes, 21, 5, 70.Google Scholar
Pot, A. M., Deeg, D. J. H. and Knipscheer, C. P. M. (2001). Institutionalization of demented elderly: the role of caregiver characteristics. International Journal of Geriatric Psychiatry, 16, 273–80.Google Scholar
Rijksinstituut voor Volksgezondheid en Milieu (RIVM) (2014). Ministerie van Volksgezondheid, Welzijn en Sport, Nationaal Kompas Volksgezondheid [National Institute for Public Health and the Environment (RIVM), Ministry of Health, Welfare and Sport, National Public Health Compass], Bilthoven, the Netherlands.Google Scholar
Rinaldi, P., Spazzafumo, L., Mastriforti, R., Mattioli, P., Marvardi, M. and Polodori, M. C. (2005). Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study. International Journal of Geriatric Psychiatry, 20, 168174.Google Scholar
Smits, C. H. M., De Lange, J., Dröes, R. M., Meiland, F., Vernooij-Dassen, M. and Pot, A. M. (2007). Effects of combined intervention programmes for people with dementia living at home and their caregivers: a systematic review. International Journal of Geriatric Psychiatry, 22, 11811193.Google Scholar
Sörensen, S., Pinquart, M. and Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42, 356–72.Google Scholar
Tan, L. L., Wong, H. B. and Allen, H. (2005). The impact of neuropsychiatric symptoms of dementia on distress in family and professional caregivers in Singapore. International Psychogeriatrics, 17, 253263.Google Scholar
Teunisse, S. (1997). Clinimetrics in Dementia. Dissertation, University of Amsterdam.Google Scholar
Teunisse, S. and de Haan, R. (1994). Adaptation of the sense of compentence-list of Vernooij-Dassen [Aanpassing van de competentielijst van Vernooij-Dassen, 1993] (In Dutch). Academic Medical Center, Department of Neurology, Amsterdam.Google Scholar
Vernooij-Dassen, M. J. F. J. (1993). Dementia and Home-care. Determinants of sense of competence in primary caregivers and the effect of professional intervention. [Dementie en Thuiszorg. Een onderzoek naar determinanten van het competentiegevoel van centrale verzorgers en het effect van professionele interventie] (In Dutch) Dissertation, Radboud University, Nijmegen, Amsterdam. Lisse: Swets & Zeitlinger.Google Scholar
Vernooij-Dassen, M. J. F. J., Felling, A. J., Brummelkamp, E., Dautzenberg, M. G., van den Bos, G. A., and Grol, R. (1999). Assessment of caregiver's competence in dealing with the burden of caregiving for a dementia patient: a short sense of competence questionnaire (SSCQ) suitable for clinical practice. Journal of the American Geriatrics Society, 47, 256257.Google Scholar
Vernooij-Dassen, M. J. F. J., Persoon, J. M. G. and Felling, A. J. A. (1996). Predictors of sense of competence in caregivers of demented persons. Social Science and Medicine, 43, 4149.Google Scholar
Vernooij-Dassen, M. J. F. J., van Hout, H. P., Hund, K. L., Hoefnagels, W. H. and Grol, R. P. (2003). Information for dementia patients and their caregivers: what information does a memory clinic pass on, and to whom?. Aging & Mental Health, 7, 34–8.Google Scholar
Vugt, M. E. de, Stevens, F., Aalten, P., Lousberg, R., Jaspers, N., and Verhey, F. R. (2005). A prospective study of the effects of behavioral symptoms on the institutionalization of patients with dementia. International Psychogeriatrics, 17, 577589.Google Scholar
Vugt, M. E. de et al. (2004). Do caregiver management strategies influence patient behaviour in dementia?. International Journal of Geriatric Psychiatry, 19, 8592.Google Scholar
Supplementary material: File

van der Lee et al. supplementary material

van der Lee et al. supplementary material 1

Download van der Lee et al. supplementary material(File)
File 222.7 KB