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Quality of Life Research
Gepubliceerd in: Quality of Life Research 3/2016

09-09-2015

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

Auteurs: Tarja H. Välimäki, Janne A. Martikainen, Kristiina Hongisto, Saku Väätäinen, Harri Sintonen, Anne M. Koivisto

Gepubliceerd in: Quality of Life Research | Uitgave 3/2016

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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.
vorige artikel Smoking status and health-related quality of life: a longitudinal study in young adults
volgende artikel Well-being and environmental quality: Does pollution affect life satisfaction?
Literatuur
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRef
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRef
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.CrossRefPubMed
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.CrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.CrossRefPubMed
17.
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: American psychiatric Association Press.
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.PubMedCentralCrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
22.
Sintonen, H. (2001). The 15D instrument of health-related quality of life: properties and applications. Annals of Medicine, 33(5), 328–336.CrossRefPubMed
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.CrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRef
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.CrossRefPubMed
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.CrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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
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.CrossRefPubMed
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.CrossRef
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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.PubMedCentralPubMed
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.CrossRefPubMed
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.CrossRefPubMed
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
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.
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.CrossRefPubMed
Metagegevens
Titel
Impact of Alzheimer’s disease on the family caregiver’s long-term quality of life: results from an ALSOVA follow-up study
Auteurs
Tarja H. Välimäki
Janne A. Martikainen
Kristiina Hongisto
Saku Väätäinen
Harri Sintonen
Anne M. Koivisto
Publicatiedatum
09-09-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 3/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1100-x

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