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

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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.

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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

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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

Authors and 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
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  2. Janne A. Martikainen
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  3. Kristiina Hongisto
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  4. Saku Väätäinen
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  5. Harri Sintonen
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  6. Anne M. Koivisto
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Corresponding author

Correspondence to Tarja H. Välimäki.

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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.

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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

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