Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis
Abstract
Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease caused by the degeneration of motor neurons. The burden for ALS caregivers is quite high. There are still few studies that have investigated the emotional impact of ALS care. We conducted a cross-sectional study among 40 ALS caregivers, assessing general worries, burden of care, depression, anxiety, perception of social support, and patients' severity of disease. Caregiver burden, depression, and anxiety were positively related with each other, and all these variables had a negative relation with social support. Patient's loss of physical functions was positively related with caregiver burden, anxiety, and somatic expression of depression. Caregivers expressed worries for their own health conditions. Given these results, we consider the hypothesis of an emotional-somatic impact of ALS care. The implications and limitations are discussed.
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Psychological distress and feelings of burden of ALS caregivers are associated with disease characteristics of the patient and with characteristics of the caregivers themselves.
“Previous research has shown that psychological distress and feelings of burden of ALS caregivers are associated with disease characteristics of the patient (i.e. physical and behavioral problems) but also with characteristics of the caregivers themselves, such as their coping style or whether they find positive meaning in caregiving [7, 9, 11–15].”
The observed increase in burden is consistent with research of burden over time in MND family carers.
“This effect is consistent with research of burden over time in MND family carers [15-17].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [15]
Carer burden increases in MND family carers over time as patient function declines.
“Moreover, carer burden increases in MND family carers over time as patient function declines [15-17].”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [15]
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- Authors
- Pagnini, F., Rossi, G., Lunetta, C., Banfi, P., Castelnuovo, G., Corbo, M., & Molinari, E.
- Affiliations
- Università Cattolica del Sacro Cuore (IT)
- Azienda Socio Sanitaria Territoriale Grande Ospedale Metropolitano Niguarda (IT)
- Corresponding author
- Pagnini, Francesco
- ORCID
- Venue
- Psychology, Health & Medicine
- Publisher
- Informa UK Limited
- Published
- 2010-12
- Volume
- 15
- Issue
- 6
- Pages
- 685-693
- ISSN
- 1354-8506 (ISSN-L)
- 1465-3966
- OpenAlex
- W1985871185
- Cited by
- 139
- References
- 23
- Citations by year
- 2026: 6 · 2025: 11 · 2024: 7 · 2023: 13 · 2022: 6 · 2021: 12 · 2020: 14 · 2019: 3 · 2018: 6 · 2017: 6 · 2016: 11 · 2015: 12 · 2014: 13 · 2013: 5 · 2012: 11
- FWCI
- 14.00
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Psychology Health & Medicine (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- amyotrophic lateral sclerosis, caregiver burden, depression, anxiety, social support, emotional impact of caregiving, somatic symptoms of depression, disease severity
- MeSH terms
- Aged, Amyotrophic Lateral Sclerosis, Anxiety, Cross-Sectional Studies, Depression, Female, Humans, Italy, Male, Middle Aged, Surveys and Questionnaires, Caregivers, Cost of Illness
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