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Reasons why family members become carers and the outcome for the person with dementia: results from the CARD study

Published online by Cambridge University Press:  01 July 2011

Andrew Camden ,
Gill Livingston  and
Claudia Cooper
Andrew Camden
Affiliation:
Department of Mental Health Sciences, University College London, UK
Gill Livingston
Affiliation:
Department of Mental Health Sciences, University College London, UK
Claudia Cooper*
Affiliation:
Department of Mental Health Sciences, University College London, UK
*
Correspondence should be addressed to: Dr Claudia Cooper, Department of Mental Health Sciences, UCL, Archway Campus, Highgate Hill, London N19 5NL, UK. Phone: +44 (0)207 288 5931; Fax: +44 (0)207 288 3411. Email: [email protected].
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Abstract

Background: Using a representative secondary care survey for the first time, we explored family carers’ reasons for providing care. We hypothesized that carers with a positive rather than negative motivation for caring would be less abusive towards the care recipient and more likely to be caring for someone still living at home a year later.

Methods: We interviewed 220 consecutively referred dementia family/friend carers from UK Community Mental Health Teams. We asked non-spousal carers why they were the main carer. Our main outcomes were the revised Modified Conflict Tactics Scale scores, measuring abusive behavior by the carer, and admission of the person with dementia to a care home.

Results: Nineteen (17.1%) said they were the main carer due to the high quality of their relationship with the care recipient, their willingness to take on or their suitability for the carer role. A further 22 (19.8%) said they were the main carer due to other potential carers’ negative relationship with the care recipient, unwillingness or lack of suitability for the role. Carers who gave the latter explanation tended to be more anxious at baseline (F = 3.0, p = 0.055), reported higher abusive behavior towards the care recipient a year later after controlling for sociodemographic variables (t = 2.0, p = 0.05), and their care recipient was more likely to be admitted to a care home in the following year (hazards ratio 9.9, p = 0.040).

Conclusions: We found preliminary evidence that carers’ reasons for providing care predict the well-being of the care recipient. Future studies involving dementia family carers should consider asking why the main carer assumed this role.

Keywords

carerdementiareasonsmotivationscare homeabuse
Type
Research Article
Information
International Psychogeriatrics , Volume 23 , Issue 9 , November 2011 , pp. 1442 - 1450
Copyright
Copyright © International Psychogeriatric Association 2011

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References

Beach, S., Schulz, R., Williamson, G., Miller, L., Weiner, M. and Lance, C. (2005). Risk factors for potentially harmful informal caregiver behavior. Journal of the American Geriatrics Society, 53, 255–261.CrossRefGoogle ScholarPubMed
Bjelland, I., Dahl, A. A., Haug, T. T. and Neckelmann, D. (2002). The validity of the Hospital Anxiety and Depression Scale: an updated literature review. Journal of Psychosomatic Research, 52, 69–77.CrossRefGoogle ScholarPubMed
Bucks, R. S., Ashworth, D. L., Wilcock, G. K. and Siegfried, K. (1996). Assessment of activities of daily living in dementia: development of the Bristol Activities of Daily Living scale. Age and Ageing, 25, 113–120.CrossRefGoogle ScholarPubMed
Cooper, C., Katona, C., Orrell, M. and Livingston, G. (2006). Coping strategies and anxiety in caregivers of people with Alzheimer's disease: the LASER-AD study. Journal of Affective Disorders, 90, 15–20.CrossRefGoogle ScholarPubMed
Cooper, C., Balamurali, T. B. and Livingston, G. (2007). A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia. International Psychogeriatrics, 19, 175–195.CrossRefGoogle ScholarPubMed
Cooper, C., Manela, M., Katona, C. and Livingston, G. (2008). Screening for elder abuse in dementia in the LASER-AD study: prevalence, correlates and validation of instruments. International Journal of Geriatric Psychiatry, 23, 3, 283–288.CrossRefGoogle ScholarPubMed
Cooper, C., Selwood, A., Blanchard, M., Walker, Z., Blizard, R. and Livingston, G. (2009). Abuse of people with dementia by family carers: representative cross sectional survey. BMJ, 338, b155.CrossRefGoogle ScholarPubMed
Cooper, C., Selwood, A., Blanchard, M., Walker, Z., Blizard, R. and Livingston, G. (2010). The determinants of family carer's abusive behaviour to people with dementia: results of the CARD study. Journal of Affective Disorders, 121, 136–142.CrossRefGoogle ScholarPubMed
Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A. and Gornbein, J. (1994). The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44, 2308.CrossRefGoogle ScholarPubMed
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-mental state”: practical method for grading cognitive state of patients for clinician. Journal of Psychiatric Research, 12, 189–198.CrossRefGoogle ScholarPubMed
Hebert, R., Bravo, G., and Preville, M. (2000). Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Canadian Journal on Aging, 19, 494–507.CrossRefGoogle Scholar
Knapp, M. et al. (2007). Dementia UK. London: Alzheimer's Society.Google Scholar
Mahoney, R., Regan, C., Katona, C. and Livingston, G. (2005). Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. American Journal of Geriatric Psychiatry, 13, 795–801.CrossRefGoogle ScholarPubMed
Quinn, C., Clare, L. and Woods, R. T. (2010). The impact of motivations and meanings on the well-being of caregivers of people with dementia: a systematic review. International Psychogeriatrics, 22, 43–55.CrossRefGoogle ScholarPubMed
Romero-Morena, R., Marques-Gonzalez, M., Losada, A. and Lopez, J. (2010). Motives for caring: relationship to stress and coping dimensions. International Psychogeriatrics, 23, 573–582.CrossRefGoogle Scholar
Walker, A. J. (1990). Motives for parental caregiving and relationship quality. Family Relations, 39, 51.CrossRefGoogle Scholar
Wancata, J., Musalek, M., Alexandrowicz, R. and Krautgartner, M. (2003). Number of dementia sufferers in Europe between the years 2000 and 2050. European Psychiatry, 18, 306–313.CrossRefGoogle ScholarPubMed
Williamson, G. M. and Shaffer, D. R. (2001). Relationship quality and potentially harmful behaviors by spousal caregivers: how we were then, how we are now. Psychology and Aging, 16, 217–226.CrossRefGoogle ScholarPubMed
Zarit, S. H., Reever, K. E. and Bachpeterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist, 20, 649–655.CrossRefGoogle ScholarPubMed
Zigmond, A. S. and Snaith, R. P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361–370.CrossRefGoogle ScholarPubMed