Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease

Ellen Svendsboe; Toril Terum; Ingelin Testad; Dag Aarsland; Ingun Ulstein; Anne Corbett; Arvid Rongve

doi:10.1002/gps.4433

Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease

Int J Geriatr Psychiatry. 2016 Sep;31(9):1075-83. doi: 10.1002/gps.4433. Epub 2016 Jan 14.

Authors

Ellen Svendsboe^{1

2}, Toril Terum³, Ingelin Testad⁴, Dag Aarsland⁵, Ingun Ulstein⁶, Anne Corbett⁷, Arvid Rongve^{8

9}

Affiliations

¹ Department of Nursing, Stord/Haugesund University College, Stord, Norway.
² Department of Neurobiology, Care Sciences and Society, Karolinska Institute, SE-141 83, Huddinge, Sweden.
³ Department of Nursing, Sogn & Fjordane University College, Sogndal, Norway.
⁴ Department of Health Studies, University of Stavanger, Stavanger, Norway.
⁵ Stavanger Hospital, Karolinska Institute, NVS, Novum, Sweden.
⁶ Department of Old Age Psychiatry, Oslo University Hospital, Oslo, Norway.
⁷ Wolfson Centre for Age-Related Diseases, King's College London, London, UK.
⁸ Psychiatry, Helse Fonna, Haugesund, Norway.
⁹ Department of Clinical Medicine, The University of Bergen, Bergen, Norway.

PMID: 26765199
DOI: 10.1002/gps.4433

Abstract

Objective: To characterise the differences in caregiver distress between carers of people diagnosed with dementia with Lewy bodies (DLB) and people with Alzheimer's disease (AD), with a view to differentiating and improving support for caregivers.

Methods: This study is a part of two larger Norwegian studies, DemVest (n = 265) and The Norwegian Dementia Register (n = 2220), with data from caregivers and people diagnosed with AD (n = 100) and DLB (n = 86) between 2005 and 2013. The average age was 74.9 years (SD = 7.8). Caregiver distress was rated by the Relative Stress Scale. Diagnosis of the person receiving care was based on a comprehensive standardised assessment program (International Classification of Diseases, Revision 10 or Diagnostic and Statistical Manual for Mental Disorders, fourth edition). Additional data collected from people receiving care were neuropsychiatric symptoms, comorbidity and activities of daily living (ADL) score. Linear regression analyses were applied, first unadjusted and then in stepwise-adjusts in addition to descriptive analyses.

Results: Caregivers to people with AD (20.2%) and 40% of caregivers for people with DLB experienced moderate or high caregiver burden with an increased risk of psychiatric disorders in the early stage of dementia. High Relative Stress Scale (RSS) total scores in caregivers was significantly associated with neuropsychiatric symptoms (Neuropsychiatric Inventory, p = 0.004) and also with impaired ADL functioning (Rapid Disability Rating Scale-2, p < 0.0005).

Conclusion: Caregiver distress differed (RSS total, p = 0.005) between people caring for someone with AD (15.0) and those caring for someone with DLB (19.9). These findings have direct implications for the needs and resources that could be available for these individuals and indicate the need for further research into caregiver burden in carers to people with DLB. Copyright © 2016 John Wiley & Sons, Ltd.

Ethics and dissemination: Cohorts were ethically approved by the Regional Ethics Committee for Medical Research Ethics in Eastern and Western Norway.

Keywords: Alzheimer's disease; Neuropsychiatric Inventory; Relative Stress Scale; caregiver burden; dementia with Lewy bodies.

MeSH terms

Activities of Daily Living
Adaptation, Psychological
Aged
Aged, 80 and over
Alzheimer Disease / nursing
Alzheimer Disease / psychology*
Caregivers / psychology*
Cost of Illness
Cross-Sectional Studies
Diagnostic and Statistical Manual of Mental Disorders
Female
Humans
Lewy Body Disease / nursing
Lewy Body Disease / psychology*
Male
Middle Aged
Norway
Regression Analysis
Stress, Psychological / psychology*