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Original Research Article

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Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis

Joling K.J. · Windle G. · Dröes R.-M. · Meiland F. · van Hout H.P.J. · MacNeil Vroomen J. · van de Ven P.M. · Moniz-Cook E. · Woods B.

Author affiliations

Bangor University, Bangor, UK; VU University Medical Centre, Amsterdam, The Netherlands

Corresponding Author

Karlijn J. Joling

Department of General Practice and Elderly Care Medicine

VU University Medical Centre, Van der Boechorststraat 7

NL-1081 BT Amsterdam (The Netherlands)

E-Mail k.joling@vumc.nl

Related Articles for ""

Dement Geriatr Cogn Disord 2016;42:198-214

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Abstract

Background/Aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services.

© 2016 The Author(s) Published by S. Karger AG, Basel


References

  1. World Health Organization: Dementia. A public health priority. Geneva, WHO, 2012.
  2. Joling KJ, Van Hout HP, Schellevis FG, van der Horst HE, Scheltens P, Knol DL, van Marwijk HW: Incidence of depression and anxiety in the spouses of patients with dementia: a naturalistic cohort study of recorded morbidity with a 6-year follow-up. Am J Geriatr Psychiatry 2010;18:146-153.
  3. Vitaliano PP, Zhang J, Scanlan JM: Is caregiving hazardous to one's physical health? A meta-analysis. Psychol Bull 2003;129:946-972.
  4. Gaugler JE, Davey A, Pearlin LI, Zarit SH: Modeling caregiver adaptation over time: the longitudinal impact of behavior problems. Psychol Aging 2000;15:437-450.
  5. Masten AS: Ordinary magic. Resilience processes in development. Am Psychol 2001;56:227-238.
  6. Bronfenbrenner U: Ecological models of human development; in Husen T, Postlethwaite TN (eds): International Encyclopedia of Eductation. New York, Elsevier Science, 1994, pp 1643-1647.
  7. Windle G, Bennett KM: Caring relationships: how to promote resilience in challenging times; in Ungar M (ed): The Social Ecology of Resilience: A Handbook of Theory and Practice. New York, Springer, 2011, pp 219-231.
  8. Windle G: What is resilience? A review and concept analysis. Rev Clin Gerontol 2011;21:152-169.
    External Resources
  9. Cherry MG, Salmon JM, Dickson JM, Powell D, Sikdar S, Ablett J: Factors influencing the resilience of carers of individuals with dementia. Rev Clin Gerontol 2013;23:251-266.
    External Resources
  10. Donnellan WJ, Bennett KM, Soulsby LK: What are the factors that facilitate or hinder resilience in older spousal dementia carers? A qualitative study. Aging Ment Health 2015;19:932-939.
  11. Chappell NL, Dujela C: Caregiving: predicting at-risk status. Can J Aging 2008;27:169-179.
  12. Wilks SE, Croom B: Perceived stress and resilience in Alzheimer's disease caregivers: testing moderation and mediation models of social support. Aging Ment Health 2008;12:357-365.
  13. Gaugler JE, Kane RL, Newcomer R: Resilience and transitions from dementia caregiving. J Gerontol B Psychol Sci Soc Sci 2007;62:38-44.
  14. Curran PJ, Hussong AM: Integrative data analysis: the simultaneous analysis of multiple data sets. Psychol Methods 2009;14:81-100.
  15. Woods RT, Orrell M, Bruce E, Edwards RT, Hoare Z, Hounsome B, Keady J, Moniz-Cook E, Orgeta V, Rees J, Russell I: REMCARE: pragmatic multi-centre randomised trial of reminiscence groups for people with dementia and their family carers: effectiveness and economic analysis. PLoS One 2016;11:e0152843.
  16. MacNeil Vroomen J, Bosmans JE, van de Ven PM, Joling KJ, van Mierlo LD, Meiland FJ, Moll van Charante EP, Van Hout HP, de Rooij SE: Community-dwelling patients with dementia and their informal caregivers with and without case management: 2-year outcomes of a pragmatic trial. J Am Med Dir Assoc 2015;16:800-808.
  17. Dröes RM, Breebaart E, Meiland FJ, van Tilburg W, Mellenbergh GJ: Effect of Meeting Centres Support Program on feelings of competence of family carers and delay of institutionalization of people with dementia. Aging Ment Health 2004;8:201-211.
  18. Dröes RM, Meiland FJ, Schmitz MJ, van Tilburg W: Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study. Aging Ment Health 2006;10:112-124.
  19. Hussong AM, Curran PJ, Bauer DJ: Integrative data analysis in clinical psychology research. Annu Rev Clin Psychol 2013;9:61-89.
  20. Goldberg D, Williams P: A user's guide to the General Health Questionnaire. Windsor, NFER-Nelson, 1988.
  21. Goldberg DP, Gater R, Sartorius N, Ustun TB, Piccinelli M, Gureje O, Rutter C: The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychol Med 1997;27:191-197.
  22. Morris JC: The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology 1993;43:2412-2414.
  23. Reisberg B, Ferris SH, de Leon MJ, Crook T: The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry 1982;139:1136-1139.
  24. 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.
  25. Perneczky R, Wagenpfeil S, Komossa K, Grimmer T, Diehl J, Kurz A: Mapping scores onto stages: Mini-Mental State Examination and Clinical Dementia Rating. Am J Geriatr Psychiatry 2006;14:139-144.
  26. Choi SH, Lee BH, Kim S, Hahm DS, Jeong JH, Yoon SJ, Jeong Y, Ha CK, Nab DL: Interchanging scores between Clinical Dementia Rating scale and Global Deterioration Scale. Alzheimer Dis Assoc Disord 2003;17:98-105.
  27. van der Kam P, Mol F, Wimmers MFHG: Beoordelingsschaal voor Oudere Patienten. Deventer, Van Loghum Slaterus, 1971.
  28. EuroQol Group: EuroQol - a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199-208.
  29. Alexopoulos GS, Abrams RC, Young RC, Shamoian CA: Cornell Scale for Depression in Dementia. Biol Psychiatry 1988;23:271-284.
  30. Watson LC, Garrett JM, Sloane PD, Gruber-Baldini AL, Zimmerman S: Depression in assisted living: results from a four-state study. Am J Geriatr Psychiatry 2003;11:534-542.
  31. Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J: The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology 1994;44:2308-2314.
  32. Aalten P, de Vugt ME, Jaspers N, Jolles J, Verhey FR: The course of neuropsychiatric symptoms in dementia. Part II: relationships among behavioural sub-syndromes and the influence of clinical variables. Int J Geriatr Psychiatry 2005;20:531-536.
  33. Selbaek G, Kirkevold Ø, Engedal K: The prevalence of psychiatric symptoms and behavioural disturbances and the use of psychotropic drugs in Norwegian nursing homes. Int J Geriatr Psychiatry 2007;22:843-849.
  34. Lyketsos CG, DelCampo L, Steinberg M, Miles Q, Steele CD, Munro C, Baker AS, Sheppard JM, Frangakis C, Brandt J, Rabins PV: Treating depression in Alzheimer disease: efficacy and safety of sertraline therapy, and the benefits of depression reduction: the DIADS. Arch Gen Psychiatry 2003;60:737-746.
  35. Mayer LS, Bay RC, Politis A, Steinberg M, Steele C, Baker AS, Rabins PV, Lyketsos CG: Comparison of three rating scales as outcome measures for treatment trials of depression in Alzheimer disease: findings from DIADS. Int J Geriatr Psychiatry 2006;21:930-936.
  36. Liu W, Gallagher-Thompson D: Impact of dementia caregiving: risks, strains, and growth; in Qualls WH, Zarit SH (eds): Aging Families and Caregiving. Hoboken, John Wiley & Sons, 2009, pp 85-111.
  37. Schneider J, Hallam A, Murray J, Foley B, Atkin L, Banerjee S, Islam MK, Mann A: Formal and informal care for people with dementia: factors associated with service receipt. Aging Ment Health 2002;6:255-265.
  38. Bennett KM: Emotional and personal resilience through life. Future of an ageing population: evidence review. London, Government Office for Science, 2015.
  39. Vernooij-Dassen MJ, Felling AJ, Brummelkamp E, Dauzenberg MG, van den Bos GA, Grol R: 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. J Am Geriatr Soc 1999;47:256-257.
  40. Spruytte N, van Audenhove C, Lammertyn F, Storms G: The quality of the caregiving relationship in informal care for older adults with dementia and chronic psychiatric patients. Psychol Psychother 2002;75:295-311.
  41. Greene JG, Smith R, Gardiner M, Timbury GC: Measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: a factor analytic study. Age Ageing 1982;11:121-126.
  42. Robinson BC: Validation of a Caregiver Strain Index. J Gerontol 1983;38:344-348.
  43. van Eijk LM, Kempen GI, van Sonderen FL: A short scale for measuring social support in the elderly: the SSL12-I (in Dutch). Tijdschr Gerontol Geriatr 1994;25:192-196.
    External Resources
  44. de Jong Gierveld J, Kamphuis FH: The development of a Rasch-type Loneliness scale. Appl Psychol Meas 1985;9:289-299.
    External Resources
  45. Jalowiec A, Murphy SP, Powers MJ: Psychometric assessment of the Jalowiec Coping Scale. Nurs Res 1984;33:157-161.
  46. Pearlin LI, Schooler C: The structure of coping. J Health Soc Behav 1978;19:2-21.
  47. Woods B: Guilt in relatives of older people in residential care. Manchester, British Congress of Gerontology, 1996.
  48. Wagnild G: Resilience and successful aging. Comparison among low and high income older adults. J Gerontol Nurs 2003;29:42-49.
  49. Nygren B, Aléx L, Jonsén E, Gustafson Y, Norberg A, Lundman B: Resilience, sense of coherence, purpose in life and self-transcendence in relation to perceived physical and mental health among the oldest old. Aging Ment Health 2005;9:354-362.
  50. Netuveli G, Wiggins RD, Montgomery SM, Hildon Z, Blane D: Mental health and resilience at older ages: bouncing back after adversity in the British Household Panel Survey. J Epidemiol Community Health 2008; 62:987-991.
  51. Carretero S, Garcés J, Ródenas F, Sanjosé V: The informal caregiver's burden of dependent people: theory and empirical review. Arch Gerontol Geriatr 2009;49:74-79.
  52. Etters L, Goodall D, Harrison BE: Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract 2008;20:423-428.
  53. Schulz R, Boerner K, Shear K, Zhang S, Gitlin LN: Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry 2006;14:650-658.
  54. Garity J: Caring for a family member with Alzheimer's disease: coping with caregiver burden post-nursing home placement. J Gerontol Nurs 2006;32:39-48.
    External Resources
  55. Garity J: Stress, learning style, resilience factors, and ways of coping in Alzheimer family caregivers. Am J Alzheimers Dis Other Demen 1997;12:171-178.
    External Resources
  56. Lyketsos CG, Lopez O, Jones B, Fitzpatrick AL, Breitner J, DeKosky S: Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: results from the cardiovascular health study. JAMA 2002;288:1475-1483.
  57. Teri L, Wagner AW: Assessment of depression in patients with Alzheimer's disease: concordance among informants. Psychol Aging 1991;6:280-285.
  58. Bath PA, Deeg D, Poppelaars J: The harmonisation of longitudinal data: a case study using data from cohort studies in the Netherlands and the United Kingdom. Ageing Soc 2010;30:1419-1437.
    External Resources
  59. Minicuci N, Noale M, León Díaz EM, Gómez León M, Andreotti A, Mutafova M: Disability-free life expectancy: a cross-national comparison among Bulgarian, Italian, and Latin American older population [sic!]. J Aging Health 2011;23:629-681.
  60. Pluijm SMF, Bardage C, Nikula S, Blumstein T, Jylhä M, Minicuci N, Zunzunegui MV, Pedersen NL, Deeg DJH: A harmonized measure of activities of daily living was a reliable and valid instrument for comparing disability in older people across countries. J Clin Epidemiol 2005;58:1015-1023.
  61. Sikkes SAM, Visser PJ, Knol DL, de Lange-de Klerk E, Tsolaki M, Frisoni GB, Nobili F, Spiru L, Rigaud AS, Frölich L, Olde Rikkert M, Soininen H, Touchon J, Wilcock G, Boada M, Hampel H, Bullock R, Vellas B, Pijnenburg YAL, Scheltens P, Verhey FR, Uitdehaag BMJ: Do instrumental activities of daily living predict dementia at 1- and 2-year follow-up? Findings from the Development of Screening Guidelines and Diagnostic Criteria for Predementia Alzheimer's Disease study. J Am Geriatr Soc 2011;59:2273-2281.
  62. Brayne C, McCracken C, Matthews FE: Cohort profile: the Medical Research Council Cognitive Function and Ageing Study (CFAS). Int J Epidemiol 2006;35:1140-1145.

Article / Publication Details

First-Page Preview
Abstract of Original Research Article

Received: June 10, 2016
Accepted: August 10, 2016
Published online: September 27, 2016
Issue release date: October 2016

Number of Print Pages: 17
Number of Figures: 2
Number of Tables: 4

ISSN: 1420-8008 (Print)
eISSN: 1421-9824 (Online)

For additional information: https://www.karger.com/DEM


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