The Two-Year Incidence of Depression and Anxiety Disorders in Spousal Caregivers of Persons with Dementia: Who is at the Greatest Risk?
Abstract
Objective Caregivers of persons with dementia play an important and economically valuable role within society, but many may do so at a considerable cost to themselves. Knowing which caregivers have the highest risk of developing a mental disorder may contribute to better support of ultra-high-risk groups with preventive interventions. This study aims to describe the incidence of depression and anxiety disorders in caregivers and to identify its significant predictors.Design Prospective cohort study with a follow-up of 24 months.Participants 181 spousal caregivers of persons with dementia without a clinical depression or anxiety disorder at baseline.Setting Memory clinics, case management services, and primary care settings in the Netherlands.Measurements The onset of depression and anxiety was measured every 3 months with the MINI International Neuropsychiatric Interview, a structured diagnostic instrument for DSM-IV mental disorders. Potential predictors were assessed at baseline.Results 60% of the caregivers developed a depressive and/or anxiety disorder within 24 months: 37% a depression, 55% an anxiety disorder, and 32% both disorders. Sub-threshold depressive symptoms (Wald χ2=6.20, df=1, OR: 3.2, 95% CI: 1.28-8.03, p=0.013) and poor self-reported health of the caregiver (Wald χ2=5.56, df=1, OR: 1.17, 95% CI: 1.03-1.34, p=0.018) at baseline were significant predictors of disorder onset.Conclusion Spousal caregivers of persons with dementia have a high risk to develop a mental disorder. Indicators related to the caregiver's (mental) health rather than environmental stressors such as patient characteristics or interruption of caregivers' daily activities predict disorder onset and can be used to identify caregivers for whom supporting preventive interventions are indicated.
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As many as 60% of ADRD caregivers who initially lack anxiety or depression develop one or both within two years of caregiving.
“Up to 60% of ADRD caregivers without anxiety or depression develop one or both diagnoses within the subsequent two years of caregiving (Joling et al., 2015).”
From Feasibility and acceptability of a telephone-based ACT intervention for caregivers (TACTICs) of adults with Alzheimer's disease and related dementias (ADRD): a randomized pilot during the COVID-19 pandemic. (2025) · cites this paper as Joling et al., 2015
This psychological morbidity is strongly linked to maladaptive coping that is less acceptance-based.
“This psychological morbidity is strongly associated with maladaptive and less acceptance-based coping (Cooper et al., 2008; Joling et al., 2015; Li et al., 2014a, 2014b).”
From Feasibility and acceptability of a telephone-based ACT intervention for caregivers (TACTICs) of adults with Alzheimer's disease and related dementias (ADRD): a randomized pilot during the COVID-19 pandemic. (2025) · cites this paper as Joling et al., 2015
ADRD caregivers report higher distress, including symptoms of anxiety and depression, caregiving burden, and existential suffering, than caregivers of people with other chronic diseases such as heart failure or cancer.
“ADRD caregivers report higher distress, including symptoms of anxiety and depression [5–9], caregiving burden [10], and existential suffering [11], than caregivers of people with other chronic diseases, such as heart failure or cancer.”
60% of ADRD caregivers without an anxiety or depression diagnosis at the beginning of the caregiving journey develop one or both diagnoses within two years of caregiving.
“Alarmingly, 60% of ADRD caregivers without an anxiety or depression diagnosis at the beginning of the caregiving journey develop one or both diagnoses within two years of caregiving [8].”
The GAD-7 has demonstrated strong reliability and validity across caregiver populations, including those caring for individuals with dementia.
“The GAD-7 has demonstrated strong reliability and validity across caregiver populations, including those caring for individuals with dementia (Joling et al., 2015).”
From Mindfulness and rumination: stress pathways for caregivers of persons living with dementia. (2026) · cites this paper as Joling et al., 2015
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“Alarmingly, 60% of ADRD caregivers without an anxiety or depression diagnosis at the beginning of the caregiving journey develop one or both diagnoses within two years of caregiving [8].”
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“The literature reports an incidence rate of 37% for major depressive disorder after a 24-month interval of caregiving, 55% for anxiety disorder, and 60% for comorbid depressive and anxiety disorders [27].”
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“…2007; Schulz & Martire, 2004; Vitaliano et al. 2003), including symptoms of anxiety and depression (Cooper, Balamurali, & Livingston, 2007; Crespo et al. 2005; Cuijpers, 2005; Joling et al. 2015; Pinquart & Sorensen, 2007), burden (Cheng, 2017), and existential suffering (Schulz et al. 2010).”
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“The comorbidity of anxiety and depressive symptoms is considered high in family caregivers of people with dementia (Barrera-Caballero et al., 2021; Joling et al., 2015).”
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Mindfulness and rumination: stress pathways for caregivers of persons living with dementia.
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“The GAD-7 has demonstrated strong reliability and validity across caregiver populations, including those caring for individuals with dementia (Joling et al., 2015).”
- Authors
- Joling, K. J., van Marwijk, H. W. J., Veldhuijzen, A. E., van der Horst, H. E., Scheltens, P., Smit, F., & van Hout, H. P. J.
- Affiliations
- Amsterdam Public Health (NL)
- Amsterdam UMC Location Vrije Universiteit Amsterdam (NL)
- Trimbos Institute (NL)
- Corresponding author
- Joling, Karlijn J.
- Venue
- The American Journal of Geriatric Psychiatry
- Publisher
- Elsevier BV
- Published
- 2015-03
- Volume
- 23
- Issue
- 3
- Pages
- 293-303
- ISSN
- 1064-7481 (ISSN-L)
- OpenAlex
- W2091368866
- Cited by
- 167
- References
- 46
- Citations by year
- 2026: 5 · 2025: 17 · 2024: 13 · 2023: 11 · 2022: 18 · 2021: 24 · 2020: 21 · 2019: 11 · 2018: 16 · 2017: 11 · 2016: 12 · 2015: 7 · 2014: 1
- FWCI
- 7.89
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- American Journal of Geriatric Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion)
- VU Research Portal (publishedVersion)
- Pure Amsterdam UMC (submittedVersion)
- Research Explorer (The University of Manchester) (submittedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- Funders
- Netherlands Organization for Health Research and Development (2620.00003)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- spousal caregivers, dementia, depression, anxiety disorders, caregiver mental health, incidence, self-reported health, risk factors, preventive interventions, caregiver burden
- MeSH terms
- Aged, Anxiety Disorders, Dementia, Depressive Disorder, Female, Humans, Male, Netherlands, Prospective Studies, Risk Factors, Time Factors, Incidence, Caregivers
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