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Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours

  • Published:
The journal of nutrition, health & aging

Abstract

Objectives

This study aimed to describe the baseline characteristics of informal carers of community-living Alzheimer’s disease (AD) patients by AD severity group and to identify factors associated with two measures of caregiver burden.

Design and setting

GERAS is a prospective observational study in France, Germany, and the UK, designed to assess costs and resource use associated with AD, for patients and their caregivers, stratified by disease severity.

Participants

1497 community-dwelling AD patients and their primary caregivers.

Measurements

Subjective caregiver burden assessed using the Zarit Burden Interview [ZBI] and time spent supervising patients (an objective measure of burden recorded using the Resource Utilization in Dementia instrument) during the month before the baseline visit were recorded. Separate multiple linear regression analyses using ZBI total score and caregiver supervision time as dependent variables were performed to identify patient and caregiver factors independently associated with caregiver burden.

Results

Increasing AD severity was associated with both subjective caregiver burden (ZBI total score) and overall caregiver time, which includes supervision time (both p<0.001, ANOVA). Better patient functioning (on instrumental activities of daily living) was independently associated with both a lower ZBI total score and less supervision time, whereas higher levels of caregiver distress due to patient behavior were associated with greater caregiver burden. Other factors independently associated with an increased ZBI total score included younger caregiver age, caregiver self-reported depression, caring for a male patient, and longer time since AD diagnosis. Caregivers living with the patient, being a male caregiver, patient living in a rural location, higher patient behavioral problem subdomain scores for apathy and psychosis, more patient emergency room visits, not receiving food delivery and receiving financial support for caregiving were all associated with greater caregiver supervision time.

Conclusion

Our results show that subjective caregiver burden and caregiver time are influenced by different factors, reinforcing the need to consider both aspects of caregiving when trying to minimize the burden of AD. However, interventions that minimize caregiver distress and improve patient functioning may impact on both subjective and objective burden.

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References

  1. Alzheimer’s Disease International. World Alzheimer Report 2009. http://www.alz.co.uk/research/files/Worldalzheimerreport.pdf. Accessed 28 November 2012

  2. Bergvall N, Brinck P, Eek D, Gustavsson A, Wimo A, Winblad B, Jönsson L. Relative importance of patient disease indicators on informal care and caregiver burden in Alzheimer disease. Int Psychogeriatr 2011;23:73–85

    Article  PubMed  Google Scholar 

  3. Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: a systematic review and metaanalysis. Alzheimers Dement 2013;9:63–75

    Article  PubMed  Google Scholar 

  4. Beinart N, Weinman J, Wade D, Brady R. Caregiver burden and psychoeducational interventions in Alzheimer’s disease: a review. Dement Geriatr Cogn Dis Extra 2012;2:638–648

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  5. Costa N, Ferlicoq L, Dermeuax-burel H, Rapp T, Garnault V, Gillette-Guyonnet S, et al. Comparison of informal care time and costs in different age-related dementias: a review. BioMed Research International, 2013. doi: 10.1155/2013/852368

    Google Scholar 

  6. Wimo A, Reed CC, Dodel R, Belger M, Jones RW, Happich M, et al. The GERAS study: a prospective observational study of costs and resource use in community dwellers with Alzheimer’s disease in three European countries — study design and baseline findings. J Alzheimers Dis 2013;36:385–399

    PubMed  Google Scholar 

  7. Wimo A, Jonsson L, Zbrozek A. The resource utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Health Aging 2010;14:685–690

    Article  CAS  PubMed  Google Scholar 

  8. Chou K-R, Chu H, Tseng C-L, Lu R-b. The measurement of caregiver burden. J Med Sci 2003;23:73–82

    Google Scholar 

  9. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980;20:649–655

    Article  CAS  PubMed  Google Scholar 

  10. Whitlatch CJ, Zarit SH, von Eye A. Efficacy of interventions with caregivers: a reanalysis. Gerontologist 31:9–14

  11. Ankri J, Andrieu S, Beaufils B, Grand A, Henrard JC. Beyond the global score of the Zarit Burden Interview: useful dimensions for clinicians. Int J Geriatr Psychiatry 2005;20:254–260

    Article  PubMed  Google Scholar 

  12. Springate BA, Tremont G. Dimensions of caregiver burden in dementia: impact of demographic, mood and care recipient variables. Am J Geriatr Psychiatry, 2013. doi:10/1016/j.jagp.2012.09.006

    Google Scholar 

  13. Germain S, Adam S, Olivier C, Cash H, Ousset PJ, Andrieu S, et al (2009). Does cognitive impairment influence burden in caregivers of patients with Alzheimer’s disease? J Alzheimers Dis 2009;17:105–114

    PubMed  Google Scholar 

  14. Cooper C, Katona C, Orrell M, Livingston G. Coping strategies, anxiety and depression in caregivers of people with Alzheimer’s disease. Int J Geriatr Psychiatry 2008;23:929–936

    Article  PubMed  Google Scholar 

  15. Conde-Sala JL, Garre-Olmo J, Turró-Garriga O, Vilalta-Franch J, López-Pousa S. Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer’s disease: an exploratory comparative design. Int J Nurs Stud 2010;47:1262–1273.

    Article  PubMed  Google Scholar 

  16. Mohamed S, Rosenheck R, Lyketsos CG, Schneider LS. Caregiver burden in Alzheimer disease: cross sectional and longitudinal patient correlates. Am J Geriatr Psychiatry 2010;18:917–927

    Article  PubMed Central  PubMed  Google Scholar 

  17. Cheng S-T, Lam LCW, Kwok T. Neuropsychiatric symptom clusters of Alzheimer disease in Hong Kong Chinese: correlates with caregiver burden and depression. Am J Geriatr Psychiatry, 2013. doi:10.1016/j.jagp.2013.01.041.

    Google Scholar 

  18. Allegri RF, Sarasola D, Serrano CM, Taragano FE, Arizaga RL, Butman J, et al. Neuropsychiatric symptoms as a predictor of caregiver burden in Alzheimer’s disease. Neuropsychiatr Dis Treat 2006;2:105–110

    PubMed Central  PubMed  Google Scholar 

  19. Campbell P, Wright J, Oyebode J, Job D, Crome P, Bentham P, et al. Determinants of burden in those who care for someone with dementia. Int J Geriatr Psychiatry 2008;23:1078–1085

    Article  CAS  PubMed  Google Scholar 

  20. Prince M, Brodaty H, Uwakwe R, Acosta D, Ferri CP, Guerra M, et al. Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 Dementia Research Group population-based survey. Int J Geriatr Psychiatry 2012;27:670–682

    Article  PubMed Central  PubMed  Google Scholar 

  21. Serrano-Aguilar PG, Lopez-Bastida J, Yanes-Lopez V. Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer’s disease. Neuroepidemiology 2006;27:136–142

    Article  CAS  PubMed  Google Scholar 

  22. Wolfs CA, Kessels A, Severens JL, Brouwer W, de Vugt ME, Verhey FR, et al. Predictive factors for the objective burden of informal care in people with dementia: a systematic review. Alzheimer Dis Assoc Disord 2012;26:197–204

    Article  PubMed  Google Scholar 

  23. Fisher GG, Franks MM, Plassman BL, Brown SL, Potter GG, Llewellyn D, et al. Caring for individuals with dementia and cognitive impairment, not dementia: findings from the aging, Demographics and Memory Study. J Am Geriatr Soc 2011;59:488–494

    Article  PubMed Central  PubMed  Google Scholar 

  24. McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADrDa Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurology 1984;34:939–944

    Article  CAS  PubMed  Google Scholar 

  25. Folstein MF, Folstein SE, McHugh PR. "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189–198

    Article  CAS  PubMed  Google Scholar 

  26. Rosen WG, Mohs RC, Davis KL. A new rating scale for Alzheimer's disease. Am J Psychiatry 1984;141:1356–1364

    CAS  PubMed  Google Scholar 

  27. Galasko D, Schmitt F, Thomas R, Jin S, Bennett D; Alzheimer's Disease Cooperative Study. Detailed assessment of activities of daily living in moderate to severe Alzheimer’s disease. J Int Neuropsychol Soc 2005;11:446–453

    Article  CAS  PubMed  Google Scholar 

  28. Cummings JL. The Neuropsychiatric Inventory: assessing psychopathology in dementia patients. Neurology 1997;48(suppl 6):s10–s16

    Article  CAS  PubMed  Google Scholar 

  29. Aalten P, Verhey FR, Boziki M, Bullock M, Byrne EJ, Camus V, et al. Neuropsychiatric syndromes in dementia. Results from the European Alzheimer Disease Consortium: Part I. Dement Geriatr Cogn Disord 2007;24:457–463

    Article  PubMed  Google Scholar 

  30. Aalten P, Verhey FR, Boziki M, Brugnolo A, Bullock R, Byrne EJ, et al. Consistency of neuropsychiatric syndromes across dementias: results from the European Alzheimer Disease Consortium. Part II. Dement Geriatr Cogn Disord 2008;25:1–8

    Article  Google Scholar 

  31. National Institute of Health and Clinical Excellence. NICE technology appraisal guideline 217. Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease. Http://www.nice.org.uk/guidance/TA217. Accessed 19 November 2012.

  32. The EuroQol Group. Euro-QoL — a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199–208

    Article  Google Scholar 

  33. Wimo A, Wetterholm AL, Mastey V, Winblad B. Evaluation of the healthcare resource utilization and caregiver time in anti-dementia drug trials. In: Wimo A, Jönsson B, Karlsson G, Winblad B (eds). Health Economics of Dementia. John Wiley and Sons, London, pp 1998;465–499

    Google Scholar 

  34. Akaike H. A new look at the statistical model identification. IEEE Transactions on Automatic Control 1974;19:716–723

    Article  Google Scholar 

  35. Sano M, Wilcock GK, van Baelen B, Kavanagh S. The effects of galantamine on caregiver time in Alzheimer’s disease. Int J Geriatr Psychiatry 2003;18:942–950

    Article  PubMed  Google Scholar 

  36. Silva P, Kergoat M-J, Shatenstein B. Challenges in managing the diet of older adults with early-stage Alzheimer dementia: a caregiver perspective. J Nutr Health Aging 2013;17:142–147

    Article  CAS  PubMed  Google Scholar 

  37. Rapp T, Grand A, Cantet C, Andrieu S, Coley N, Portet F, et al. Public financial support receipt and non-medical resource utilization in Alzheimer’s disease results from the PLASA study. Soc Sci Med 2011;72:1310–1316

    Article  PubMed  Google Scholar 

  38. Mesterton J, Wimo A, By A, Langworth S, Winblad B, Jönsson L. Cross sectional observational study on the societal costs of Alzheimer’s disease. Curr Alzheimer Res 2010;7:358–367

    Article  CAS  PubMed  Google Scholar 

  39. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci 2009;11:217–228

    PubMed Central  PubMed  Google Scholar 

  40. Martinez-Martin P, Rodriguez-Balzquez C, Forjaz MJ. Quality of life and burden in caregivers for patients with Parkinson’s disease: concepts, assessment and related factors. Expert Rev Pharmacoecon Outcomes Res 2012;12:221–230

    Article  PubMed  Google Scholar 

  41. Okura T, Langa KM. Caregiver burden and neuropsychiatric symptoms in older adults with cognitive impairment: the Aging, Demographics, and Memory Study (ADAMS). Alzheimer Dis Assoc Disord 2011;25:116–121

    Article  PubMed Central  PubMed  Google Scholar 

  42. Raccichini A, Castellani S, Civerchia P, Fioravanti P, Scarpino O. The caregiver’s burden of Alzheimer patients: differences between live-in and non-live-in. Am J Alzheimers Dis Other Demen 2009;24:377–383

    Article  PubMed  Google Scholar 

  43. Kaufer DO, Cummings JL, Christine D, Bray T, Castellon S, Masterman D, et al. Assessing the impact of neuropsychiatric symptoms in Alzheimer’s disease: the neuropsychiatric inventory caregiver distress scale. J Am Geriatr Soc 1998;46:210–215

    CAS  PubMed  Google Scholar 

  44. Matsumoto N, Ikeda M, Fukuhara R, Shinagawa S, Ishikawa T, Mori T, et al. Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dement Geriatr Cogn Disord 2007;23:219–224

    Article  PubMed  Google Scholar 

  45. De Vugt ME, Stevens F, Aalten P, Lousberg R, Jaspers N, Verhey FR. A prospective study of the effects of behavioral symptoms on the institutionalization of patients with dementia. Int Psychogeriatr 2005;17:577–589

    Article  PubMed  Google Scholar 

  46. Zawadzki I, Mondon K, Peru N, Hommet C, Constans T, Gaillard P, et al. Attitudes towards Alzheimer’s disease as a risk factor for caregiver burden. Int Psychogeriatr 2011;23:1451–1461

    Article  CAS  PubMed  Google Scholar 

  47. Schwarzkopf L, Menn P, Kunz S, Holle R, Lauterberg J, Marx P, et al. Costs of care for dementia patients in community setting: an analysis for mild and moderate disease stage. Value Health 2011;14:827–835

    Article  PubMed  Google Scholar 

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Author information

Authors and Affiliations

  1. Parc Santari Sant Joan de Déu, CIBERSAM, Universitat de Barcelona, Sant Boi de Llobregat, Barcelona, Spain

    J. M. Haro

  2. Global Health Outcomes, Eli Lilly and Company, Lilly Corporate Center, Indianapolis, IN, 46285, USA

    Kristin Kahle-Wrobleski

  3. Clinica della Memoria, Department of Neurology and Psychiatry, University of Rome “Sapienza”, Rome, Italy

    G. Bruno

  4. Eli Lilly and Company Limited, Lilly Research Centre, Windlesham, UK

    M. Belger & C. C. Reed

  5. Medical Department, Eli Lilly Italia S.p.A, Sesto Fiorentino (FI), Italy

    G. Dell’Agnello

  6. Department of Neurology, Philipps-University, Marburg, Germany

    R. Dodel

  7. RICE (The Research Institute for the Care of Older People), The RICE Centre, Royal United Hospital, Bath, UK

    R. W. Jones

  8. Gerontopole, Toulouse University Hospital, UMR 1027 INSERM Universite Toulouse 3, Toulouse, France

    B. Vellas

  9. KI Alzheimer’s Disease Research Center, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden

    A. Wimo

  10. Agencia Qualitat i Avaluació Sanitaries, Barcelona, Spain

    J. M. Argimon

Authors
  1. J. M. Haro
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  2. Kristin Kahle-Wrobleski
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  3. G. Bruno
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  4. M. Belger
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  5. G. Dell’Agnello
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  6. R. Dodel
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  9. B. Vellas
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  10. A. Wimo
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Corresponding author

Correspondence to Kristin Kahle-Wrobleski.

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Haro, J.M., Kahle-Wrobleski, K., Bruno, G. et al. Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours. J Nutr Health Aging 18, 677–684 (2014). https://doi.org/10.1007/s12603-014-0500-x

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  • DOI: https://doi.org/10.1007/s12603-014-0500-x

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