Abstract
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.
Highlights
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease due to the degeneration of both upper and lower motor neurons
Needs of ALS patients’ caregivers include practical, social, informational, psychological, physical, emotional, and spiritual issues, being dynamic during the ALS course in that they change as the disease progresses
More recently, COVID-19 pandemic confined the majority of the worldwide population to their homes and many ALS centers moved to telemedicine services for continuing to give assistance and support to ALS patients and their caregivers
Summary
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease due to the degeneration of both upper and lower motor neurons. Informal caregivers represent a physical and emotional support to patients a the heterogeneous phenotypes of ALS, interventions should be individualized based on “adikffeeyrernot lceonintetxhtseapnrdoucneisqsuoefsidtueactiisoinosn”-[m6]a. Rs of ALS patients [23,24,25,26,27,28,29,30,31,32], which in turn may evenTraeksuinltgininatobetatcecroduinsetastheamt aunsaignegmee-nht.ealth may help tailor interventions to the caregTivaekrins’gsiunptopoacrtconuenetdtsh[a3t3u],sitnegleem-heedaicltihnemaapyphreolapchtaeislohraivnetebrveeenntiaodnaspttoedthteocraeremgoivteelrys’ msuapnpaogret AneLeSdps a[3ti3e]n, ttseliemmperdoivciinnge athpepreoffaicchieenschyaovfehbeeaelnthacdaarept[e3d4,t3o5]r.eImnoptaelryticmualanra,gdeuAe LtoS Cpaotrioennatsviirmups rdoivseinasget2h0e1e9ffi(CciOenVcIyDo-1f9h)epaaltnhdceamreic[3, 4co,3n5t]a.iInnmpeanrttimcuelaasru, dreuseletod Ctoonroenceasvsiarruys disease 2019 (COVID-19) pandemic, containment measures led to necessary restrictions in rpeesrtsroicntaiolnmsoinvepmeresnotnaanldmroedveumceednat cacnedssrteodturcaedditaiocnceaslshteoalttrhacdairteiorneaslohuercaeltsh. We described ongoing telehealth services for ALS patients and their family caregivers during the COVID-19 pandemic. All included studies mentioned several needs of ALS patients’ caregivers and, among those, 14 manuscripts presented potential psychological approaches to them.
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