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Longitudinal predictors of informal and formal caregiving time in community-dwelling dementia patients

  • André Hajek
  • Christian Brettschneider
  • Annette Ernst
  • Tina Posselt
  • Birgitt Wiese
  • Jana Prokein
  • Siegfried Weyerer
  • Jochen Werle
  • Angela Fuchs
  • Michael Pentzek
  • Janine Stein
  • Steffi G. Riedel-Heller
  • Horst Bickel
  • Edelgard Mösch
  • Kathrin Heser
  • Frank Jessen
  • Wolfgang Maier
  • Martin Scherer
  • Hans-Helmut König
Original Paper

Abstract

Purpose

Care provided in the community for dementia patients on an individual basis may be very time consuming. Yet, little is known about the factors affecting caregiving time for community-dwelling dementia patients. Thus, we aimed to investigate the predictors of informal and formal caregiving time for these patients in a longitudinal approach.

Method

Caregiving time for n = 126 community-dwelling dementia patients was assessed by proxy interviews in four assessments at 6-month intervals (1.5 years of longitudinal follow-up; AgeCoDe study). Measurement of informal caregiving time was based on a German adaptation of the Resource Utilization in Dementia questionnaire. Dementia severity was measured by the Clinical Dementia Rating (CDR). We used random effects models to estimate the effects of sociodemographic variables (age, gender, marital status and education), comorbidity and dementia severity on informal and formal caregiving time.

Results

At the first assessment, mean age was 85.0 years (±3.2 years). The majority of patients was female (65.9 %), not married (divorced, single, widowed: 55.6 %) and had primary education (63.5 %). Furthermore, mean GDS was 4.4 (±0.8) and mean MMSE was 20.1 (±5.1). According to CDR, 43 individuals had very mild dementia, 55 individuals had mild dementia and 28 individuals had moderate/severe dementia. Moreover, mean total caregiving time was 3.4 h per day (±4.0). Thereof the main part represents informal caregiving time (2.3 h ± 3.4), whereas formal caregiving time was 1.2 h (±2.4). Dementia severity was associated with total caregiving time, mainly influenced by informal caregiving time. Age was positively associated with total caregiving time, driven by formal caregiving time, while being married was positively associated with total caregiving time, mainly affected by informal caregiving time. All need categories of informal caregiving time were strongly related to dementia severity, whereas none of the categories of formal caregiving time were related to dementia severity.

Conclusions

Our findings extend previous studies that found an association between informal caregiving time and dementia severity. Moreover, our findings highlight the role of informal care for community-dwelling dementia patients in Germany. Informal caregiving time strongly increases with dementia severity. Consequently, as the number of patients suffering from dementia is expected to increase considerably in the next decades, there is a paramount need to strengthen the informal care system to meet patients’ needs.

Keywords

Informal caregiving time Formal caregiving time Dementia Longitudinal study 

Notes

Acknowledgments

The authors thank two anonymous reviewers who provided insightful comments to strengthen the manuscript. Moreover, we want to thank all participating patients and their general practitioners for their good collaboration. This publication is part of the German Research Network on Dementia (KND), the German Research Network on Degenerative Dementia (KNDD), and the Study on Needs, Health Service Use, Costs and Health-related Quality of Life in a large Sample of Oldest-old Primary Care Patients (85+) (AgeQualiDe) and was funded by the German Federal Ministry of Education and Research (Grants KND 01GI0102, 01GI0420, 01GI0422, 01GI0423, 01GI0429, 01GI0431, 01GI0433 and 01GI0434; Grants KNDD 01GI0710, 01GI0711, 01GI0712, 01GI0713, 01GI0714, 01GI0715, 01GI0716 and 01ET1006B; and Grants AgeQualiDe 01GY1322A, 01GY1322B, 01GY1322C, 01GY1322D, 01GY1322E, 01GY1322F, 01GY1322G).

Members of the AgeCoDe Study Group

Principal Investigators [Hendrik van den Bussche (2002–2011)]: Wolfgang Maier, Martin Scherer.

Heinz-Harald Abholz, Cadja Bachmann, Horst Bickel, Wolfgang Blank, Hendrik van den Bussche, Sandra Eifflaender-Gorfer, Marion Eisele, Annette Ernst, Angela Fuchs, Kathrin Heser, Frank Jessen, Hanna Kaduszkiewicz, Teresa Kaufeler, Mirjam Köhler, Hans-Helmut König, Alexander Koppara, Carolin Lange, Hanna Leicht, Tobias Luck, Melanie Luppa, Manfred Mayer, Edelgard Mösch, Julia Olbrich, Michael Pentzek, Jana Prokein, Anna Schumacher, Steffi Riedel-Heller, Janine Stein, Susanne Steinmann, Franziska Tebarth, Michael Wagner, Klaus Weckbecker, Dagmar Weeg, Jochen Werle, Siegfried Weyerer, Birgitt Wiese, Steffen Wolfsgruber, Thomas Zimmermann.

Compliance with ethical standards

Conflict of interests

The authors declare that they have no conflict of interest.

Ethical statement

The ethics committees of the participating centers approved the study [reference numbers: 050/02 (University of Bonn), 2079 (Faculty of Medicine, University of Düsseldorf), 2817/2007 (Hamburg Medical Association), 309/2007 (Faculty of Medicine, University of Leipzig), 2007-253E-MA (Medical Ethics Commission II, University of Heidelberg at the University Medical Center of Mannheim), 713/02 (Faculty of Medicine, Technical University of Munich)]. The study was conducted according to the principles expressed in the Declaration of Helsinki. All participants gave written informed consent prior to study entry.

References

  1. 1.
    Bickel H (2005) Epidemiologie und Gesundheitsökonomie [Epidemiology and Health Economics]. Thieme Verlag, Stuttgart, pp 1–15Google Scholar
  2. 2.
    Goldsmith M (1996) Hearing the voice of people with dementia: opportunities and obstacles. Readers DigestGoogle Scholar
  3. 3.
    Wiles JL, Leibing A, Guberman N et al (2012) (52) The meaning of “aging in place” to older people. Gerontologist 3:357–366. doi: 10.1093/geront/gnr098 CrossRefGoogle Scholar
  4. 4.
    Federal Ministry of Justice (1994) Social code book XI. Federal Ministry of Justice, BerlinGoogle Scholar
  5. 5.
    Jakobsen M, Poulsen PB, Reiche T et al (2011) Costs of informal care for people suffering from dementia: evidence from a Danish survey. Dement Geriatr Cogn Disord Extra 1(1):418–428CrossRefGoogle Scholar
  6. 6.
    Bakker C, de Vugt Marjolein E, van Vliet D et al (2013) The use of formal and informal care in early onset dementia: results from the NeedYD study. Am J Geriatr Psychiatry 21(1):37–45CrossRefPubMedGoogle Scholar
  7. 7.
    Zhu CW, Scarmeas N, Torgan R et al (2006) Clinical characteristics and longitudinal changes of informal cost of Alzheimer’s disease in the community. J Am Geriatr Soc 54(10):1596–1602CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Leicht H, König H, Stuhldreher N et al (2013) Predictors of costs in dementia in a longitudinal perspective. PLoS One 8(7):e70018CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Zhu CW, Leibman C, McLaughlin T et al (2008) Patient dependence and longitudinal changes in costs of care in Alzheimer’s disease. Dement Geriatr Cogn Disord Extra 26(5):416–423CrossRefGoogle Scholar
  10. 10.
    Folstein MF, Folstein SE, McHugh PR (1975) Mini-mental state: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 12(3):189–198CrossRefPubMedGoogle Scholar
  11. 11.
    Blessed G, Tomlinson BE, Roth M (1968) The association between quantitative measures of dementia and of senile change in the cerebral grey matter of elderly subjects. Br J Psychiatry 114(512):797–811CrossRefPubMedGoogle Scholar
  12. 12.
    Luck T, Riedel-Heller SG, Luppa M et al (2010) Risk factors for incident mild cognitive impairment—results from the German Study on Ageing, Cognition and Dementia in Primary Care Patients (AgeCoDe). Acta Psychiatr Scand 121(4):260–272CrossRefPubMedGoogle Scholar
  13. 13.
    Zaudig M, Mittelhammer J, Hiller W et al (1991) SIDAM: a structured interview for the diagnosis of dementia of the Alzheimer type, multi-infarct dementia and dementias of other aetiology according to ICD-10 and DSM-III-R. Psychol Med 21(01):225–236CrossRefPubMedGoogle Scholar
  14. 14.
    Morris JC (1993) The clinical dementia rating (CDR): current version and scoring rules. Neurology 43(11):2412–2414CrossRefPubMedGoogle Scholar
  15. 15.
    Reisberg B, Ferris SH, de Leon Mony J et al (1982) The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry 139(9):1136–1139CrossRefPubMedGoogle Scholar
  16. 16.
    Mahoney FI (1965) Functional evaluation: the Barthel index. Maryland State Med J 14:61–65Google Scholar
  17. 17.
    Lawton MP, Brody EM (1969) Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist 9(3 Part 1):179–186CrossRefPubMedGoogle Scholar
  18. 18.
    Morris JC (1997) Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. Int Psychogeriatr 9(S1):173–176CrossRefPubMedGoogle Scholar
  19. 19.
    Rikkert MG, Tona KD, Janssen L et al (2011) Validity, reliability, and feasibility of clinical staging scales in dementia: a systematic review. Am J Alzheimer’s Dis Other Dement 26(5):357CrossRefGoogle Scholar
  20. 20.
    Foster JR, Sclan S, Welkowitz J et al (1988) Psychiatric assessment in medical long-term care facilities: reliability of commonly used rating scales. Int J Geriatr Psychiatry 3(3):229–233CrossRefGoogle Scholar
  21. 21.
    Hartmaier SL, Sloane PD, Guess HA et al (1994) The MDS Cognition Scale: a valid instrument for identifying and staging nursing home residents with dementia using the minimum data set. J Am Geriatr Soc 42(11):1173–1179CrossRefPubMedGoogle Scholar
  22. 22.
    Neubauer S, Holle R, Menn P et al (2009) A valid instrument for measuring informal care time for people with dementia. Int J Geriatr Psychiatry 24(3):275–282CrossRefPubMedGoogle Scholar
  23. 23.
    Wimo A, Nordberg G (2007) Validity and reliability of assessments of time: comparisons of direct observations and estimates of time by the use of the resource utilization in dementia (RUD)-instrument. Arch Gerontol Geriatr 44(1):71–81CrossRefPubMedGoogle Scholar
  24. 24.
    Wimo A, Jonsson L, Zbrozek A (2010) The Resource Utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Health Aging 14(8):685–690CrossRefPubMedGoogle Scholar
  25. 25.
    Cameron AC, Trivedi PK (2005) Microeconometrics: methods and applications. Cambridge University Press, New YorkCrossRefGoogle Scholar
  26. 26.
    Rothgang H, Müller R, Unger R (2013) Schwerpunktthema: Reha bei Pflege [Barmer GEK Care report 2013]. Asgard-Verl.-Service, SiegburgGoogle Scholar
  27. 27.
    Elwert F, Winship C (2014) Endogenous selection bias: the problem of conditioning on a collider variable. Annu Rev Sociol 40:31–53CrossRefGoogle Scholar
  28. 28.
    Statistisches Bundesamt [Federal Statistical Office] (2009) Bevölkerung Deutschlands bis 2060. 12. koordinierte Bevölkerungsvorausberechnung [Germany’s Population by 2060. Results of the 12th Coordinated Population Projection]Google Scholar
  29. 29.
    Statistisches Bundesamt [Federal Statistical Office] (2011) Bevölkerung und Erwerbstätigkeit. Entwicklung der Privathaushalte bis 2030. Ergebnisse der Haushaltsvorausberechnung [Population and employment. Development of private households until 2030. Results of household projections]Google Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • André Hajek
    • 1
  • Christian Brettschneider
    • 1
  • Annette Ernst
    • 2
  • Tina Posselt
    • 2
  • Birgitt Wiese
    • 3
  • Jana Prokein
    • 3
  • Siegfried Weyerer
    • 4
  • Jochen Werle
    • 4
  • Angela Fuchs
    • 5
  • Michael Pentzek
    • 5
  • Janine Stein
    • 6
  • Steffi G. Riedel-Heller
    • 6
  • Horst Bickel
    • 7
  • Edelgard Mösch
    • 7
  • Kathrin Heser
    • 8
  • Frank Jessen
    • 9
    • 10
  • Wolfgang Maier
    • 8
    • 10
  • Martin Scherer
    • 2
  • Hans-Helmut König
    • 1
  1. 1.Department of Health Economics and Health Services Research, Hamburg Center for Health EconomicsUniversity Medical Center Hamburg-EppendorfHamburgGermany
  2. 2.Department of Primary Medical Care, Center for Psychosocial MedicineUniversity Medical Center Hamburg-EppendorfHamburgGermany
  3. 3.Institute of General PracticeHannover Medical SchoolHannoverGermany
  4. 4.Central Institute of Mental Health, Medical Faculty MannheimHeidelberg UniversityMannheimGermany
  5. 5.Institute of General Practice, Medical FacultyHeinrich-Heine-University DüsseldorfDüsseldorfGermany
  6. 6.Institute of Social Medicine, Occupational Health and Public HealthUniversity of LeipzigLeipzigGermany
  7. 7.Department of PsychiatryTechnical University of MunichMunichGermany
  8. 8.Department of PsychiatryUniversity of BonnBonnGermany
  9. 9.Department of Psychiatry and PsychotherapyUniversity of CologneCologneGermany
  10. 10.German Center for Neurodegenerative Diseases (DZNE)BonnGermany

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