Skip to main content

Impact of Alzheimer’s disease on the family caregiver’s long-term quality of life: results from an ALSOVA follow-up study

Quality of Life Research volume 25, pages 687–697 (2016)Cite this article

Abstract

Purpose

To examine caregivers’ health-related quality of life (HRQoL) and well-being during the first 3 years after their family member’s Alzheimer’s disease (AD) diagnosis and assessed the relationship between caregivers’ HRQoL, well-being, and the severity of AD. Further, to compare of caregivers’ HRQoL to general population.

Methods

Longitudinal design (36 months) after AD diagnosis of 236 caregiver–patient dyads. Linear regression was used to assess age- and gender-adjusted association between repeated measurements of caregivers’ HRQoL and the severity of AD. For comparison with general population, the National Health 2011 Health Examination Survey data was utilized.

Results

Caregivers had significantly lower HRQoL than age- and gender-standardized counterparts. Severity of AD was significantly (p < 0.05) associated with the mobility and depression dimensions of caregiver’s HRQoL but not with the total HRQoL index score.

Conclusions

Caregivers’ HRQoL seems to deteriorate earlier than previously noted. The severity of AD has not that great impact on caregiver’s HRQoL as assumed.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

43,34 €

Price includes VAT (Finland)
Tax calculation will be finalised during checkout.

Fig. 1
Fig. 2
Fig. 3
Fig. 4

Abbreviations

AD:

Alzheimer’s disease

ADCS-ADL:

Alzheimer’s Disease Cooperative Study Activities of Daily Living scale

AIC:

Akaike information criteria

CDR:

Clinical Dementia Rating

CDR-SOB:

Clinical Dementia Rating, Sum of Boxes

CT:

Computed tomography

DSM-IV:

Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition

GEE:

Generalized estimating equation

HRQoL:

Health-related quality of life

MCI:

Mild cognitive impairment

MMSE:

Mini-mental state examination

MRI:

Magnetic resonance imaging

NINCDS-ADRDA:

National Institute of Neurological and Communicative Disorders and Stroke and Alzheimer’s Disease and Related Disorders Association

NPI:

Neuropsychiatric inventory

QIC:

Quasi-AIC

VAS:

Visual analog scale

References

  1. Argimon, J. M., Limon, E., Vila, J., & Cabezas, C. (2005). Health-related quality-of-life of care-givers as a predictor of nursing-home placement of patients with dementia. Alzheimer Disease and Associated Disorders, 19(1), 41–44.

    Article  PubMed  Google Scholar 

  2. Schölzel-Dorenbos, C. J., Draskovic, I., Vernooij-Dassen, M. J., & Olde Rikkert, M. G. (2009). Quality of life and burden of spouses of Alzheimer disease patients. Alzheimer Disease and Associated Disorders, 23(2), 171–177.

    Article  PubMed  Google Scholar 

  3. Takai, M., Takahashi, M., Iwamitsu, Y., Ando, N., Okazaki, S., Nakajima, K., et al. (2009). The experience of burnout among home caregivers of patients with dementia: Relations to depression and quality of life. Archives of Gerontology and Geriatrics, 49(1), e1–e5.

    Article  CAS  PubMed  Google Scholar 

  4. Thomas, P., Lalloué, F., Preux, P. M., Hazif-Thomas, C., Pariel, S., Inscale, R., et al. (2006). Dementia patients caregivers quality of life: The PIXEL study. International Journal of Geriatric Psychiatry, 21(1), 50–56.

    Article  PubMed  Google Scholar 

  5. Cupidi, C., Realmuto, S., Lo Coco, G., Cinturino, A., Talamanca, S., Arnao, V., et al. (2012). Sleep quality in caregivers of patients with Alzheimer’s disease and Parkinson’s disease and its relationship to quality of life. International Psychogeriatrics, 24(11), 1827–1835.

    Article  PubMed  Google Scholar 

  6. Luppa, M., Luck, T., Brähler, E., König, H. H., & Riedel-Heller, S. G. (2008). Prediction of institutionalisation in dementia. A systematic review. Dementia and Geriatric Cognitive Disorders, 26(1), 65–78.

    Article  PubMed  Google Scholar 

  7. World Health Organization. (1995). The World Health Organization Quality of Life Assessment (HWOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41(10), 1403–1409.

    Article  Google Scholar 

  8. Markowitz, J. S., Gutterman, E. M., Sadik, K., & Papadopoulos, G. (2003). Health-related quality of life for caregivers of patients with Alzheimer disease. Alzheimer Disease and Associated Disorders, 17(4), 209–214.

    Article  PubMed  Google Scholar 

  9. Serrano-Aguilar, P. G., Lopez-Bastida, J., & Yanes-Lopez, V. (2006). Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer’s disease. Neuroepidemiology, 27(3), 136–142.

    Article  CAS  PubMed  Google Scholar 

  10. Ekwall, A. K., Sivberg, B., & Hallberg, I. R. (2007). Older caregivers’ coping strategies and sense of coherence in relation to quality of life. Journal of Advanced Nursing, 57(6), 584–596.

    Article  PubMed  Google Scholar 

  11. Takai, M., Takahashi, M., Iwamitsu, Y., Oishi, S., & Miyaoka, H. (2011). Subjective experiences of family caregivers of patients with dementia as predictive factors of quality of life. Psychogeriatrics, 11(2), 98–104.

    Article  PubMed  Google Scholar 

  12. Duggleby, W. D., Swindle, J., Peacock, S., & Ghosh, S. (2011). A mixed methods study of hope, transitions, and quality of life in family caregivers of persons with Alzheimer’s disease. BMC Geriatrics, 2011(11), 88.

    Article  Google Scholar 

  13. Coen, R. F., O’Boyle, C. A., Coakley, D., & Lawlor, B. A. (2002). Individual quality of life factors distinguishing low-burden and high-burden caregivers of dementia patients. Dementia and Geriatric Cognitive Disorders, 13(3), 164–170.

    Article  PubMed  Google Scholar 

  14. Välimäki, T., Martikainen, J., Hongisto, K., Fraunberg, M., Hallikainen, I., Sivenius, J., et al. (2014). Decreasing sense of coherence and its determinants in spousal caregivers of persons with mild Alzheimer’s disease in three year follow-up: ALSOVA study. International Psychogeriatrics, 26(7), 1211–1220.

    Article  PubMed  Google Scholar 

  15. Hallikainen, I., Koivisto, A. M., Paajanen, T., Hiltunen, A., Karppi, P., Vanhanen, M., et al. (2012). Cognitive and neuropsychiatric symptom differences in early stages of Alzheimer’s disease: Kuopio ALSOVA study. Dementia and Geriatric Cognitive Disorders Extra, 2, 209–218.

    PubMed Central  Article  PubMed  Google Scholar 

  16. McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D., & Stadlan, E. M. (1984). 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, 34(7), 939–944.

    Article  CAS  PubMed  Google Scholar 

  17. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: American psychiatric Association Press.

    Google Scholar 

  18. Williams, M. M., Storandt, M., Roe, C. M., & Morris, J. C. (2013). Progression of Alzheimer’s disease as measured by Clinical Dementia Rating Sum of Boxes scores. Alzheimer’s and Dementia, 9(1 Suppl.), S39–S44.

    PubMed Central  Article  PubMed  Google Scholar 

  19. Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.

    Article  CAS  PubMed  Google Scholar 

  20. Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994). The neuropsychiatric inventory: Comprehensive assessment of psychopathology in dementia. Neurology, 44(12), 2308–2314.

    Article  CAS  PubMed  Google Scholar 

  21. Galasko, D., Bennet, D., Sano, M., Ernesto, C., Thomas, R., Grundman, M., et al. (1997). An inventory to assess activities of daily living for clinical trials in Alzheimer’s disease. The Alzheimer’s Disease Cooperative Study. Alzheimer Disease and Associated Disorders, 11(Suppl 2), S33–S39.

    Article  PubMed  Google Scholar 

  22. Sintonen, H. (2001). The 15D instrument of health-related quality of life: properties and applications. Annals of Medicine, 33(5), 328–336.

    Article  CAS  PubMed  Google Scholar 

  23. Sintonen, H. (1995). The 15-D measure of health related quality of life. II Feasibility, reliability and validity of its valuation system. Melbourne: National Centre for Health Program Evaluation, Working Paper 42.

  24. Alanne, S., Roine, R. P., Räsänen, P., Vainiola, T., & Sintonen, H. (2015). Estimating the minimum important change in the 15D scores. Quality of Life Research, 24(3), 599–606.

    Article  PubMed  Google Scholar 

  25. Naglie, G., Hogan, D. B., Krahn, M., Beattie, B. L., Black, S. E., Macknight, C., et al. (2011). Predictors of patient self-ratings of quality of life in Alzheimer disease: cross-sectional results from the Canadian Alzheimer’s Disease Quality of Life Study. American Journal of Geriatric Psychiatry, 19(10), 881–890.

    PubMed Central  Article  PubMed  Google Scholar 

  26. Koskinen, S., Lundqvist, A., & Ristiluoma, N. (Eds.). (2012). Health, functional capacity and welfare in Finland in 2011. Helsinki: National Institute for Health and Welfare (THL), Report 68/2012.

  27. WMA. (2013). WMA declaration of Helsinki—Ethical Principles for Medical Research Involving Human Subjects. http://www.wma.net/en/30publications/10policies/b3/index.html

  28. Välimäki, T. (2012) Family caregivers of persons with Alzheimer’s disease: focusing on the sense of coherence and adaptation to caregiving—An ALSOVA follow-up study. Publications of the University of Eastern Finland. Dissertations in Health Sciences 116, University of Eastern Finland, Kuopio.

  29. Bruce, J. M., McQuiggan, M., Williams, V., Westervelt, H., & Tremont, G. (2008). Burden among spousal and child caregivers of patients with mild cognitive impairment. Dementia and Geriatric Cognitive Disorders, 25(4), 385–390.

    Article  PubMed  Google Scholar 

  30. Davies, H. D., Newkirk, L. A., Pitts, C. B., Coughlin, C. A., Sridhar, S. B., Zeiss, L. M., et al. (2010). The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. International Psychogeriatrics, 22(4), 618–628.

    Article  PubMed  Google Scholar 

  31. McIlvane, J. M., Popa, M. A., Robinson, B., Houseweart, K., & Haley, W. E. (2008). Perceptions of illness, coping, and well-being in persons with mild cognitive impairment and their care partners. Alzheimer Disease and Associated Disorders, 22(3), 284–292.

    Article  PubMed  Google Scholar 

  32. Seeher, K. M., Low, L. F., Reppermund, S., Slavin, M. J., Draper, B. M., Kang, K., et al. (2014). Correlates of psychological distress in study partners of older people with and without mild cognitive impairment (MCI)—The Sydney Memory and Ageing Study. Aging & Mental Health, 18(6), 694–705.

    Article  Google Scholar 

  33. Zhang, S., Edwards, H., Yates, P., Li, C., & Guo, Q. (2014). Self-efficacy partially mediates between social support and health-related quality of life in family caregivers for dementia patients in Shanghai. Dementia and Geriatric Cognitive Disorders, 37(1–2), 34–44.

    Article  CAS  PubMed  Google Scholar 

  34. Saarni, S. I., Suvisaari, J, Sintonen, H, Koskinen, S, Härkänen, T, & Lönnqvist, J. (2007). The health-related quality-of-life impact of chronic conditions varied with age in general population. Journal of Clinical Epidemiology, 60(12), 1288.e1–1288.e11.

  35. Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardious to one’s physical health? A meta-analysis. Psychological bulletin, 129(6), 946–972.

    Article  PubMed  Google Scholar 

  36. McCurry, S. M., Gibbons, L. E., Logsdon, R. G., Vitiello, M. V., & Teri, L. (2009). Insomnia in caregivers of persons with dementia: Who is at risk and what can be done about it? Sleep Medicine Clinics, 4(4), 519–526.

    PubMed Central  Article  PubMed  Google Scholar 

  37. Chiu, Y. C., Lee, Y. N., Wang, P. C., Chang, T. H., Li, C. L., Hsu, W. C., et al. (2014). Family caregivers’ sleep disturbance and its associations with multilevel stressors when caring for patients with dementia. Aging and Mental Health, 18(1), 92–101.

    Article  PubMed  Google Scholar 

  38. Bruvik, F. K., Ulstein, I. D., Ranhoff, A. H., & Engedal, K. (2012). The quality of life of people with dementia and their family carers. Dementia and Geriatric Cognitive Disorders, 34(1), 7–14.

    Article  PubMed  Google Scholar 

  39. Perrin, P. B., Morgan, M., Aretouli, E., Sutter, M., Snipes, D. J., Hoyos, G. R., et al. (2014). Connecting health-related quality of life and mental health in dementia caregivers from Colombia, South America. Journal of Alzheimer’s Disease, 39(3), 499–509.

    PubMed  Google Scholar 

  40. Papastavrou, E., Andreou, P., Middleton, N., Papacostas, S., & Georgiou, I. K. (2014). Factors associated with quality of life among family members of patients with dementia in Cyprus. International Psychogeriatrics, 26(3), 443–452.

    Article  PubMed  Google Scholar 

  41. Välimäki, T. H., Vehviläinen-Julkunen, K. M., Pietilä, A. M., & Pirttilä, T. A. (2009). Caregiver depression is associated with a low sense of coherence and health-related quality of life. Aging & Mental Health, 13(6), 799–807.

    Article  Google Scholar 

  42. Eloniemi-Sulkava, U., Notkola, I. L., Hämäläinen, K., Rahkonen, T., Viramo, P., Hentinen, M., et al. (2002). Spouse caregivers’ perceptions of influence of dementia on marriage. International Psychogeriatrics, 14(1), 47–58.

    Article  PubMed  Google Scholar 

  43. Simonelli, C., Tripodi, F., Rossi, R., Fabrizi, A., Lembo, D., Cosmi, V., et al. (2008). The influence of caregiver burden on sexual intimacy and marital satisfaction in couples with an Alzheimer spouse. International Journal of Clinical Practice, 62(1), 47–52.

    Article  CAS  PubMed  Google Scholar 

  44. Bell, C. M., Araki, S. S., & Neumann, P. J. (2001). The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimer Disease and Associated Disorders, 15(3), 129–136.

    Article  CAS  PubMed  Google Scholar 

  45. O’Bryant, S. E., Lacritz, L. H., Hall, J., Waring, S. C., Chan, W., Khodr, Z. G., et al. (2010). Validation of the new interpretive guidelines for the clinical dementia rating scale sum of boxes score in the national Alzheimer’s Coordinating center database. Archives of Neurology, 67(6), 746–749.

    PubMed Central  PubMed  Google Scholar 

  46. McLaughlin, T., Buxton, M., Mittendorf, T., Redekop, W., Mucha, L., Darba, J., et al. (2010). Assessment of potential measures in models of progression in Alzheimer disease. Neurology, 75(14), 1256–1262.

    Article  CAS  PubMed  Google Scholar 

  47. Coley, N., Andrieu, S., Jaros, M., Weiner, M., Cedarbaum, J., & Vellas, B. (2011). Suitability of the Clinical Dementia Rating-Sum of Boxes as a single primary endpoint for Alzheimer’s disease trials. Alzheimer’s and Dementia, 7(6), 602–610.

    Article  PubMed  Google Scholar 

  48. Conde-Sala, J. L., Turró-Garriga, O., Garre-Olmo, J., Vilalta-Franch, J., & Lopez-Pousa, S. (2014). Discrepancies regarding the quality of life of patients with Alzheimer`s disease: A three-year longitudinal study. Journal of Alzheimer’s Disease, 39(3), 511–525.

    PubMed  Google Scholar 

  49. Phung, K. T., Waldorff, F. B., Buss, D. V., Eckermann, A., Keiding, N., Rishoj, S., et al. (2014). A three-year follow-up on the efficacy of psychosocial interventions for patients with mild dementia and their caregivers: The multicentre, rater-blinded, randomised Danish Alzheimer Intervention Study (DAISY). British Medical Journal Open, 2014, 3.

    Google Scholar 

  50. Torrance, G. W., Feeny, D., & Furlong, W. (2001). Visual Analog Scales: Do they have a role in the measurement of preferences for health states? Medical Decision Making, 21(4), 329–334.

    Article  CAS  PubMed  Google Scholar 

Download references

Acknowledgments

The authors wish to thank Markku Kalinen, Lotta Salo and Helena Mäkelä for their valuable assistance with data preparation. The authors also wish to thank Raquel Lahoz and Frederic de Reydet de Vulpillières for their time and support in the preparation of this manuscript.

Author contributions

Tarja Välimäki, Janne Martikainen, Anne Koivisto and Saku Väätäinen take the responsibility for the integrity of the data and the accuracy of the data analysis. Harri Sintonen carried out the comparisons with the general population. T.V., J.M., A.M.K. have full access to all data. All the authors have reviewed and approved the manuscript.

Funding/support

The ALSOVA study was supported by grants from the Yrjö Jahnsson Foundation, the Finnish Brain Research and Rehabilitation Foundation Center Neuron, and the Social Insurance Institute of Finland (Kela). This study was supported by Novartis Pharma AG and Kuopio University Hospital (EVO/VTR-Grant 5220/5772728), the Finnish Nurses Association (TV), and the Foundation of Municipal Development in Finland (TV).

Author information

Affiliations

  1. Department of Nursing Science, University of Eastern Finland, P.O.Box 1627, 70211, Kuopio, Finland

    Tarja H. Välimäki

  2. Unit of Nursing Development, Clinical Education and Research, Kuopio University Hospital (KYS), P.O.Box 100, 70029, Kuopio, Finland

    Tarja H. Välimäki

  3. Pharmacoeconomics and Outcomes Research Unit, School of Pharmacy, University of Eastern Finland, P.O.Box 1627, 70211, Kuopio, Finland

    Janne A. Martikainen & Saku Väätäinen

  4. Department of Geriatrics, Institute of Public Health and Clinical Nutrition, University of Eastern Finland, P.O.Box 1627, 70211, Kuopio, Finland

    Kristiina Hongisto

  5. Department of Public Health, University of Helsinki, PL 41, 00014, Helsinki, Finland

    Harri Sintonen

  6. Institute of Clinical Medicine, Neurology, University of Eastern Finland, P.O.Box 1627, 70211, Kuopio, Finland

    Anne M. Koivisto

  7. Neurology of Neuro Center, Kuopio University Hospital (KYS), P.O.Box 100, 70029, Kuopio, Finland

    Anne M. Koivisto

Authors
  1. Tarja H. Välimäki
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Janne A. Martikainen
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Kristiina Hongisto
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Saku Väätäinen
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Harri Sintonen
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Anne M. Koivisto
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Tarja H. Välimäki.

Ethics declarations

Conflict of interest

Janne Martikainen is a senior partner of ESiOR Oy, which carries out health economic and outcome research studies for pharmaceutical companies, food industry companies, and hospitals. Saku Väätäinen is a paid employee of ESiOR Oy. Raquel Lahoz is a paid employee of Novartis Pharma AG. Harri Sintonen is the developer of the 15D.

Additional information

Role of the sponsors The sponsors had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or the preparation or the submission of the manuscript for publication. One of the sponsors (Novartis Pharma AG) has given separate approval. The other sponsors have no role in approval. All the study sponsors have been informed by progression reports as agreed with each sponsor.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Välimäki, T.H., Martikainen, J.A., Hongisto, K. et al. Impact of Alzheimer’s disease on the family caregiver’s long-term quality of life: results from an ALSOVA follow-up study. Qual Life Res 25, 687–697 (2016). https://doi.org/10.1007/s11136-015-1100-x

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-015-1100-x

Keywords

  • Family caregivers
  • Alzheimer’s disease
  • Health-related quality of life
  • 15D
  • Psychological distress