Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic
Open accessAbstract
Family caregivers of people with amyotrophic lateral sclerosis (ALS), a severely disabling neurodegenerative disease due to the degeneration of both upper and lower motor neurons, have a very demanding role in managing their relatives, thereby often experiencing heavy care burden. Previous literature has widely highlighted that this situation reduces caregivers’ quality of life and increases their psychological distress and risk of health problems, but there are relatively few studies that focus on psychological interventions for these situations. Family support is more—not less—important during crisis. However, during the COVID-19 pandemic, maintaining public safety has required restricting the physical presence of families for hospitalized patients. Caregivers of ALS patients felt increased sense of loneliness and experienced greater difficulties in the access to both hospital and home assistance. In response, health systems rapidly adapted family-centric procedures and tools to circumvent restrictions on physical presence. In this regard, internet-based and telehealth solutions have been adopted to facilitate the routine, predictable, and structured communication, crucial to family-centered care. This narrative review aims at addressing more current matters on support needs and interventions for improving wellbeing of caregivers of ALS patients. In particular, we aimed at highlighting several gaps related to the complex needs of caregivers of ALS patients, to the interventions carried out in order to respond to these needs, and to the changes that COVID-19 pandemic caused from 2020 to nowadays in clinical managing of ALS patients. Finally, we report ongoing experiences of psychological support for family caregivers of ALS patients through telehealth solutions, which have been reinforced in case of needing of physical distancing during the COVID-19 pandemic.
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The COVID-19 pandemic created unprecedented challenges for clinical care and research in neuromuscular disease and chronic respiratory failure patients on home invasive mechanical ventilation, who often felt abandoned.
“The COVID-19 pandemic has created unprecedented challenges for clinical care and research in NMD and CRF in HIMV who often have been feeling abandoned [20, 21], an aspect also found in caregivers [22].”
From Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19 (2023) · cites this paper as [21]
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Emotional stress in primary caregivers of people with a diagnosis of amyotrophic lateral sclerosis
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Wilson, E., Turner, N., Macdonald, G. M., & Faull, C. (2026) · Palliative Care and Social Practice · doi:10.1177/26323524261452739
Reflective Reappraisal and Coping Among Long-term Amyotrophic Lateral Sclerosis Family Caregivers
Yamamoto, M., & Suzuki, M. (2026) · Home Health Care Management & Practice · doi:10.1177/10848223261483626
- Authors
- D’Alvano, G., Buonanno, D., Passaniti, C., De Stefano, M., Lavorgna, L., Tedeschi, G., Siciliano, M., & Trojsi, F.
- Affiliations
- University of Campania "Luigi Vanvitelli" (IT)
- Department of Advanced Medical and Surgical Sciences, Università degli Studi della Campania “Luigi Vanvitelli”, 80138 Naples, Italy
- Corresponding author
- Trojsi, Francesca
- ORCID
- Venue
- Brain Sciences
- Publisher
- MDPI AG
- Published
- 2021-12-30
- Volume
- 12
- Issue
- 1
- Pages
- 49
- ISSN
- 2076-3425 (ISSN-L)
- PMC
- PMC8773661
- OpenAlex
- W4206022187
- Cited by
- 32
- References
- 59
- Citations by year
- 2026: 4 · 2025: 6 · 2024: 10 · 2023: 8 · 2022: 4
- FWCI
- 1.45
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Brain Sciences (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Archivio Istituzionale della Ricerca - Università degli Studi della Campania "Luigi Vanvitelli" (submittedVersion)
- 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, family caregivers, caregiver burden, psychological distress, caregiver well-being, telemedicine, COVID-19 pandemic, family-centered care, loneliness, online intervention
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