Problem-focused coping underlying lower caregiver burden in ALS-FTD: implications for caregiver intervention

Abstract

Objective: Amyotrophic lateral sclerosis (ALS) is a multisystem neurodegenerative disorder which includes cognitive and behavioural symptoms akin to frontotemporal dementia (FTD).Despite the necessity of caregiver intervention to assist with the management of cognitive and behavioural symptoms, there has been a lack of research on the topic. A focus on caregiver coping may offer a promising foundation to guide the development of interventions as part of ALS care. Accordingly, the aim of the present study was to examine the relationships between caregiver coping, psychological morbidity and burden of care in the context of ALS cognitive and behavioural symptoms.Methods: Fifty-five patient-caregiver dyads were recruited from specialised ALS and FTD clinics. Specific coping strategies were examined using the COPE Inventory/Brief COPE and psychological morbidity and burden were assessed using the Depression, Anxiety, and Stress Scale-21 and Zarit Burden Interview. The relationship between coping, psychological morbidity and burden of care were analysed using univariate and multivariate methods.Results: High-burden caregivers were more likely to be caring for patients with a diagnosis of ALS-FTD (p =.0001). Caregivers used problem-focused strategies (particularly planning) more frequently (M=71.4, SD=15.3) compared to emotion-focused (M=60.8, SD=12.3) and dysfunctional coping strategies (M=42.2, SD=8.6). A diagnosis of ALS-FTD (p=.0001) and problem-focused strategies (p=.024) emerged as significant predictors of caregiver burden.Caregiver anxiety, depression and stress were not predictive of caregiver burden (p=.151).Conclusions: Timely provision of caregiver support optimising problem-focused coping strategies as part of multidisciplinary ALS care, particularly for caregivers of ALS-FTD patients may mitigate caregiver burden.

A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments

“…The sense of distance that can occur between people when communicating through social media can furthermore for some people enable particular forms of computer-mediated distal empathy and still enable interactions and sharing of experiences with peers [ 40 ]. However, timely provision of problem-solving coping strategies is important to take into account when mitigating caregiver burden in PALS/Cis [ 1 ].…”

“…Nevertheless, we found that targeting information on cognitive and behavioral impairments not only offered an intimate and reflexive environment but was also useful to emphasize the shared destinies and to learn from peers. Caga et al (2021) also found it particularly important to offer information on ALS and cognitive impairments and problem-solving strategies as part of supporting caregivers of PALS/Cis [ 1 ]. Our results showed that some participants found it beneficial to keep a diary during the intervention.…”

“…Participants were sampled based on the following inclusion criteria: [ 1 ] caregivers (partners and spouses) living with a person diagnosed with ALS referred to RCFM who had received an initial visit from healthcare professionals from RCFM, [ 2 ] caregivers who were able to speak and understand Danish, and [ 3 ] caregivers of persons with ALS with a cut-off score ≥ 22 on the Amyotrophic Lateral Sclerosis-Frontotemporal Dementia-Questionnaire (ALS-FTD-Q), a validated questionnaire containing 25 items, the total score ranging from 0 to 100, with higher scores indicating more behavioral changes [ 34 ]. A cut-off score ≥ 22 on the ALS-FTD-Q indicated mild behavioral change of the person with ALS [ 34 ].…”

“…Amyotrophic lateral sclerosis (ALS) is a devastating progressive neurodegenerative disease that has prominent non-motor manifestations like cognitive and behavioral impairments [ 1 ]. The discussion of the ALS and frontotemporal dementia (FTD) continuum has been retold and are now described as two distinct entities [ 2 ].…”

“…Caregivers of people with ALS are likely to experience greater psychological well-being and quality of life from combined psychoeducational support and mindfulness [ 18 ]. Similarly, active planning within a multidisciplinary care setting provides an avenue for caregivers of people with ALS and FTD to proactively cope with cognitive/behavioral impairments that will induce improved care and reduce the risk of caregiver burnout [ 1 ]. A rehabilitation program for people with ALS and their caregivers has been shown to have a positive effect on the participants’ incentive to understand the disease and benefit from peer support [ 19 ].…”