Skip to main content
Top
Published in: BMC Geriatrics 1/2018

Open Access 01-12-2018 | Research article

Dementia as a predictor of care-related quality of life in informal caregivers: a cross-sectional study to investigate differences in health-related outcomes between dementia and non-dementia caregivers

Authors: Nina Karg, Elmar Graessel, Ottilie Randzio, Anna Pendergrass

Published in: BMC Geriatrics | Issue 1/2018

Login to get access

Abstract

Background

The objectives of this study with a large sample of informal caregivers (CG) were a) to compare health-related outcomes of CGs caring for a patient with dementia and those caring for a relative with another chronic disease and b) to check whether dementia is a predictor of CG’s care-related quality of life (QoL) in CarerQoL-7D.

Methods

This cross-sectional study involved self-reported data from 386 informal CGs who applied for an initial grade or upgrade of the care level of the care recipient at the Medical Service of Compulsory Health Insurance Funds of Bavaria (Germany). By obtaining data this way, systematic biases often associated with the acquisition of CGs were prevented. Bivariate and multiple analyses were conducted using a univariate covariance model (ANCOVA).

Results

Bivariate analyses showed significantly higher levels of subjective burden and lower QoL in the dementia group. No significant differences were found in terms of physical health and depressiveness, though there was a tendency suggesting higher levels of depressiveness in dementia CGs. Multiple analysis explaining QoL by dementia status after controlling for CG’s sex, age and employment status revealed a significant effect of dementia, suggesting caregiving for a dementia patient was associated with lower QoL.

Conclusions

Results of the study suggest that caring for a relative with dementia is associated with poorer health, i.e. greater levels of subjective burden and depressiveness, and predicts lower QoL in CGs. These findings emphasize the importance of specific interventions aiming to support informal CGs of dementia patients.
Footnotes
1
The care level describes the extent to which care is needed on a 4-level ordinal scale: 0 (no care needed), 1 (mild care needed), 2 (moderate care needed), 3 (severe care needed). It is assessed by trained experts who are independent of the insurance system. Classification is based on the need for physical care. Formal care is financed by long-term care insurance on the basis of the care level.
 
2
The MDK is the official consulting and expertizing service for the statutory health and nursing care insurance (SHI). The SHI is the standard national health care insurance and covers over 85% of the German population.
 
3
Total daily care time consists of the daily time required for help with ADL, IADL and supervision of the CR
 
4
The median absolute deviation is a measure of statistical dispersion and is computed by averaging absolute differences between individual scores and the median of the variable. It is a more robust estimator compared to standard deviation, which is more resilient to outliers.
 
5
the general experience of happiness is a broad outcome measure that does not only pertain to caregiving, but may also include aspects of well-being that are unrelated to the caregiving activity, which makes it insensitive for the assessment of care-related QoL
 
6
two distinct scales with two scores which cannot be summed up into one comprehensive score for care-related QoL; due to the questionable benefit of a single-item VAS and to prevent potential dropouts related to CG’s confusion about differing answer formats within the questionnaire (VAS vs. ordinal scale) the CarerQoL-VAS was omitted
 
Literature
1.
go back to reference Statistisches Bundesamt: Pflegestatistik 2013. Pflege im Rahmen der Pflegeversicherung. Deutschlandergebnisse; 2015. Statistisches Bundesamt: Pflegestatistik 2013. Pflege im Rahmen der Pflegeversicherung. Deutschlandergebnisse; 2015.
3.
go back to reference Vitaliano PP, Zhang J, Scanlan JM. Is caregiving hazardous to one's physical health? A meta-analysis. Psychol Bull. 2003;129(6):946–72.CrossRefPubMed Vitaliano PP, Zhang J, Scanlan JM. Is caregiving hazardous to one's physical health? A meta-analysis. Psychol Bull. 2003;129(6):946–72.CrossRefPubMed
4.
go back to reference Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250–67.CrossRefPubMed Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250–67.CrossRefPubMed
5.
go back to reference Perkins M, Howard VJ, Wadley VG, Crowe M, Safford MM, Haley WE, Howard G, Roth DL. Caregiving strain and all-cause mortality: evidence from the REGARDS study. J Gerontol Ser B Psychol Sci Soc Sci. 2013;68(4):504–12.CrossRef Perkins M, Howard VJ, Wadley VG, Crowe M, Safford MM, Haley WE, Howard G, Roth DL. Caregiving strain and all-cause mortality: evidence from the REGARDS study. J Gerontol Ser B Psychol Sci Soc Sci. 2013;68(4):504–12.CrossRef
6.
go back to reference Pinquart M, Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol Ser B Psychol Sci Soc Sci. 2003;58B(2):112–28.CrossRef Pinquart M, Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol Ser B Psychol Sci Soc Sci. 2003;58B(2):112–28.CrossRef
7.
go back to reference Pinquart M, Sörensen S. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol. 2007;62b(2):126–37.CrossRef Pinquart M, Sörensen S. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol. 2007;62b(2):126–37.CrossRef
9.
go back to reference Langa KM, Chernew ME, Kabeto MU, Herzog AR, Ofstedal MB, Willis RJ, Wallace RB, Mucha LM, Straus WL, Fendrick AM. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. J Gen Intern Med. 2001;16(11):770–8.CrossRefPubMedPubMedCentral Langa KM, Chernew ME, Kabeto MU, Herzog AR, Ofstedal MB, Willis RJ, Wallace RB, Mucha LM, Straus WL, Fendrick AM. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. J Gen Intern Med. 2001;16(11):770–8.CrossRefPubMedPubMedCentral
10.
go back to reference Gonzalez-Salvador MT, Arango C, Lyketsos CG, Barba AC. The stress and psychological morbidity of the Alzheimer patient caregiver. Int J Geriatr Psychiatry. 1999;14(9):701–10.CrossRefPubMed Gonzalez-Salvador MT, Arango C, Lyketsos CG, Barba AC. The stress and psychological morbidity of the Alzheimer patient caregiver. Int J Geriatr Psychiatry. 1999;14(9):701–10.CrossRefPubMed
11.
go back to reference Miyamoto Y, Tachimori H, Ito H. Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatr Nurs. 2010;31(4):246–53.CrossRefPubMed Miyamoto Y, Tachimori H, Ito H. Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatr Nurs. 2010;31(4):246–53.CrossRefPubMed
12.
go back to reference Ory MG, Yee JL, Tennstedt SL. The extent and impact of dementia care: unique challenges experienced by family caregivers. In: Schulz R, editor. Handbook on dementia caregiving: evidence-based interventions for family caregivers. New York: Springer Publishing Co.; 2000. p. 330. Ory MG, Yee JL, Tennstedt SL. The extent and impact of dementia care: unique challenges experienced by family caregivers. In: Schulz R, editor. Handbook on dementia caregiving: evidence-based interventions for family caregivers. New York: Springer Publishing Co.; 2000. p. 330.
13.
go back to reference Grau H, Graessel E, Berth H. The subjective burden of informal caregivers of persons with dementia: extended validation of the German language version of the burden scale for family caregivers (BSFC). Aging Ment Health. 2015;19(2):159–68.CrossRefPubMed Grau H, Graessel E, Berth H. The subjective burden of informal caregivers of persons with dementia: extended validation of the German language version of the burden scale for family caregivers (BSFC). Aging Ment Health. 2015;19(2):159–68.CrossRefPubMed
14.
go back to reference Germain S, Adam S, Olivier C, Cash H, Ousset PJ, Andrieu S, Vellas B, Meulemans T, Reynish E, Salmon E, et al. Does cognitive impairment influence burden in caregivers of patients with Alzheimer's disease? J Alzheimers Dis. 2009;17(1):105–14.CrossRefPubMed Germain S, Adam S, Olivier C, Cash H, Ousset PJ, Andrieu S, Vellas B, Meulemans T, Reynish E, Salmon E, et al. Does cognitive impairment influence burden in caregivers of patients with Alzheimer's disease? J Alzheimers Dis. 2009;17(1):105–14.CrossRefPubMed
15.
go back to reference McConaghy R, Caltabiano ML. Caring for a person with dementia: exploring relationships between perceived burden, depression, coping and well-being. Nurs Health Sci. 2005;7(2):81–91.CrossRefPubMed McConaghy R, Caltabiano ML. Caring for a person with dementia: exploring relationships between perceived burden, depression, coping and well-being. Nurs Health Sci. 2005;7(2):81–91.CrossRefPubMed
16.
go back to reference Laks J, Goren A, Duenas H, Novick D, Kahle-Wrobleski K. Caregiving for patients with Alzheimer's disease or dementia and its association with psychiatric and clinical comorbidities and other health outcomes in Brazil. Int J Geriatr Psychiatry. 2016;31(2):176–85.CrossRefPubMed Laks J, Goren A, Duenas H, Novick D, Kahle-Wrobleski K. Caregiving for patients with Alzheimer's disease or dementia and its association with psychiatric and clinical comorbidities and other health outcomes in Brazil. Int J Geriatr Psychiatry. 2016;31(2):176–85.CrossRefPubMed
17.
go back to reference Gräßel E. Häusliche Pflege dementiell und nicht dementiell Erkrankter Teil II: Gesundheit und Belastung der Pflegenden. Z Gerontol Geriatr. 1998;31(1):57–62.CrossRefPubMed Gräßel E. Häusliche Pflege dementiell und nicht dementiell Erkrankter Teil II: Gesundheit und Belastung der Pflegenden. Z Gerontol Geriatr. 1998;31(1):57–62.CrossRefPubMed
18.
19.
go back to reference Schulz R, Martire L. Family caregiving of persons with dementia - Prevalance, health effects, and Suppport strategies. Am J Geriatr Psychiatry. 2004;12:240–9.CrossRefPubMed Schulz R, Martire L. Family caregiving of persons with dementia - Prevalance, health effects, and Suppport strategies. Am J Geriatr Psychiatry. 2004;12:240–9.CrossRefPubMed
20.
go back to reference Ory MG, Hoffman RR 3rd, Yee JL, Tennstedt S, Schulz R. Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist. 1999;39(2):177–85.CrossRefPubMed Ory MG, Hoffman RR 3rd, Yee JL, Tennstedt S, Schulz R. Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist. 1999;39(2):177–85.CrossRefPubMed
21.
go back to reference Bell CM, Araki SS, Neumann PJ. The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord. 2001;15(3):129–36.CrossRefPubMed Bell CM, Araki SS, Neumann PJ. The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord. 2001;15(3):129–36.CrossRefPubMed
22.
go back to reference The EuroQol Group. EuroQol - a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199–208.CrossRef The EuroQol Group. EuroQol - a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199–208.CrossRef
23.
go back to reference World Health Organization. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946. New York: World Health Organization. p. 1948. World Health Organization. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946. New York: World Health Organization. p. 1948.
25.
go back to reference Santos RL, Sousa MF, Simoes-Neto JP, Nogueira ML, Belfort TT, Torres B, Rosa RD, Laks J, Dourado MC. Caregivers’ quality of life in mild and moderate dementia. Arq Neuropsiquiatr. 2014;72(12):931–7.CrossRefPubMed Santos RL, Sousa MF, Simoes-Neto JP, Nogueira ML, Belfort TT, Torres B, Rosa RD, Laks J, Dourado MC. Caregivers’ quality of life in mild and moderate dementia. Arq Neuropsiquiatr. 2014;72(12):931–7.CrossRefPubMed
26.
go back to reference Brouwer WB, van Exel NJ, van Gorp B, Redekop WK. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006;15(6):1005–21.CrossRefPubMed Brouwer WB, van Exel NJ, van Gorp B, Redekop WK. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006;15(6):1005–21.CrossRefPubMed
27.
go back to reference Coen RF, O'Boyle CA, Swanwick GRJ, Coakley D. Measuring the impact on relatives of caring for people with Alzheimer's disease: quality of life, burden and well-being. Psychol Health. 1999;14(2):253–61.CrossRef Coen RF, O'Boyle CA, Swanwick GRJ, Coakley D. Measuring the impact on relatives of caring for people with Alzheimer's disease: quality of life, burden and well-being. Psychol Health. 1999;14(2):253–61.CrossRef
28.
go back to reference Ferrara M, Langiano E, Di Brango T, De Vito E, Di Cioccio L, Bauco C. Prevalence of stress, anxiety and depression in with Alzheimer caregivers. Health Qual Life Outcomes. 2008;6:93.CrossRefPubMedPubMedCentral Ferrara M, Langiano E, Di Brango T, De Vito E, Di Cioccio L, Bauco C. Prevalence of stress, anxiety and depression in with Alzheimer caregivers. Health Qual Life Outcomes. 2008;6:93.CrossRefPubMedPubMedCentral
29.
go back to reference Srivastava G, Tripathi RK, Tiwari SC, Singh B, Tripathi SM. Caregiver burden and quality of life of key caregivers of patients with dementia. Indian J Psychol Med. 2016;38(2):133–6.CrossRefPubMedPubMedCentral Srivastava G, Tripathi RK, Tiwari SC, Singh B, Tripathi SM. Caregiver burden and quality of life of key caregivers of patients with dementia. Indian J Psychol Med. 2016;38(2):133–6.CrossRefPubMedPubMedCentral
30.
go back to reference Farina N, Page TE, Daley S, Brown A, Bowling A, Basset T, Livingston G, Knapp M, Murray J, Banerjee S. Factors associated with the quality of life of family carers of people with dementia: a systematic review. Alzheimers Dement. 2017;13(5):572–81.CrossRefPubMed Farina N, Page TE, Daley S, Brown A, Bowling A, Basset T, Livingston G, Knapp M, Murray J, Banerjee S. Factors associated with the quality of life of family carers of people with dementia: a systematic review. Alzheimers Dement. 2017;13(5):572–81.CrossRefPubMed
31.
go back to reference Brähler E, Hinz A, Scheer JW. GBB-24. Der Gießener Beschwerdebogen. Manual. Bern: Hans Huber; 2008. Brähler E, Hinz A, Scheer JW. GBB-24. Der Gießener Beschwerdebogen. Manual. Bern: Hans Huber; 2008.
34.
go back to reference Zank S, Schacke C, Leipold B. Berliner Inventar zur Angehörigenbelastung - Demenz (BIZA-D). Z Klin Psychol Psychother. 2006;35(4):296–305.CrossRef Zank S, Schacke C, Leipold B. Berliner Inventar zur Angehörigenbelastung - Demenz (BIZA-D). Z Klin Psychol Psychother. 2006;35(4):296–305.CrossRef
35.
go back to reference Lutomski JE, van Exel NJ, Kempen GI, Moll van Charante EP, den Elzen WP, Jansen AP, Krabbe PF, Steunenberg B, Steyerberg EW, Olde Rikkert MG, et al. Validation of the care-related quality of life instrument in different study settings: findings from the older persons and informal caregivers survey minimum DataSet (TOPICS-MDS). Qual Life Res. 2015;24(5):1281–93.CrossRefPubMed Lutomski JE, van Exel NJ, Kempen GI, Moll van Charante EP, den Elzen WP, Jansen AP, Krabbe PF, Steunenberg B, Steyerberg EW, Olde Rikkert MG, et al. Validation of the care-related quality of life instrument in different study settings: findings from the older persons and informal caregivers survey minimum DataSet (TOPICS-MDS). Qual Life Res. 2015;24(5):1281–93.CrossRefPubMed
36.
go back to reference World Health Organization. The ICD-10 classification of mental and behavioural disorders: clinical descriptions and diagnostic guidelines. Geneva: World Health Organization (WHO; 1992. World Health Organization. The ICD-10 classification of mental and behavioural disorders: clinical descriptions and diagnostic guidelines. Geneva: World Health Organization (WHO; 1992.
37.
go back to reference BARMER GEK (31.10.2016). In pesonal Communication 2016. BARMER GEK (31.10.2016). In pesonal Communication 2016.
38.
go back to reference Papastavrou E, Charalambous A, Tsangari H, Karayiannis G. The burdensome and depressive experience of caring: what cancer, schizophrenia, and Alzheimer's disease caregivers have in common. Cancer Nurs. 2012;35(3):187–94.CrossRefPubMed Papastavrou E, Charalambous A, Tsangari H, Karayiannis G. The burdensome and depressive experience of caring: what cancer, schizophrenia, and Alzheimer's disease caregivers have in common. Cancer Nurs. 2012;35(3):187–94.CrossRefPubMed
39.
go back to reference Suehs BT, Shah SN, Davis CD, Alvir J, Faison WE, Patel NC, van Amerongen D, Bobula J. Household members of persons with Alzheimer's disease: health conditions, healthcare resource use, and healthcare costs. J Am Geriatr Soc. 2014;62(3):435–41.CrossRefPubMed Suehs BT, Shah SN, Davis CD, Alvir J, Faison WE, Patel NC, van Amerongen D, Bobula J. Household members of persons with Alzheimer's disease: health conditions, healthcare resource use, and healthcare costs. J Am Geriatr Soc. 2014;62(3):435–41.CrossRefPubMed
40.
go back to reference Clipp EC, George LK. Dementia and cancer: a comparison of spouse caregivers. Gerontologist. 1993;33(4):534–41.CrossRefPubMed Clipp EC, George LK. Dementia and cancer: a comparison of spouse caregivers. Gerontologist. 1993;33(4):534–41.CrossRefPubMed
Metadata
Title
Dementia as a predictor of care-related quality of life in informal caregivers: a cross-sectional study to investigate differences in health-related outcomes between dementia and non-dementia caregivers
Authors
Nina Karg
Elmar Graessel
Ottilie Randzio
Anna Pendergrass
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Geriatrics / Issue 1/2018
Electronic ISSN: 1471-2318
DOI
https://doi.org/10.1186/s12877-018-0885-1

Other articles of this Issue 1/2018

BMC Geriatrics 1/2018 Go to the issue