Patients diagnosed with amyotrophic lateral sclerosis (ALS) experience both physical and psychological symptoms. Though many patients with ALS and their loved ones respond with remarkable resiliency to this diagnosis, some may experience symptoms of distress, anxiety, and depression. Specific neuropsychiatric symptoms are also recognized as part of ALS symptomatology and may impact clinical management and treatment choices.
The most recent CROSS TALK: CASE CONFERENCES FROM MGH published in the Journal of Clinical Psychiatry brings together neurologists, psychiatrists and psychologists, and palliative care providers to discuss the treatment of a 65-year-old man (Michael) diagnosed with ALS. This case presents both the psychological and pharmacologic aspects of caring for patients with ALS. The multidisciplinary team explores how these approaches impact the patient, as well as how ALS-specific challenges present throughout the course of treatment.
As part of Michael’s treatment, psychotherapy was provided by Ethan Lester, PhD, a clinical psychologist who has conducted research on psychosocial interventions for people with ALS and other neurodegenerative disorders. In his work with Michael, Lester uses a combination of cognitive behavioral therapy (CBT), dialectical behavior therapy (DBT), and acceptance and commitment therapy (ACT) to address challenges in managing mood and distress and interpersonal functioning) and to increase vitality and meaning through mindfulness, behavioral commitments, and personal values work.
Improving Psychosocial Interventions for Patients with ALS
While these evidence-based interventions are likely to benefit patients with ALS, research from Christina Rush, PhD, Lester, and their colleagues at the Center for Health Outcomes and Interdisciplinary Research (CHOIR) at Mass General, indicates that ALS-specific psychosocial interventions are needed. Rush and colleagues note that while psychological coping is a key component of palliative care, standard ALS care rarely includes psychological interventions early on in the trajectory of the illness. In the case described above, Michael initiated psychotherapy 12 years after receiving his diagnosis.
Rush and colleagues note that dyadic interventions for patients and their care-partners who endorse elevated emotional distress, especially when initiated early, provide an opportunity to build skills to address the distress associated with the diagnosis and may help patients with ALS and their care-partners to communicate with each other and with the medical team. Interventions that build skills for managing the psychological and physical symptoms across the illness trajectory can improve early coping and can make space for spiritual and existential considerations that enhance long-term emotional adjustment. Importantly, interventions initiated early can give dyads the time to learn and practice resiliency skills to support optimal coping over time.
Resilient Together – ALS
Rush and colleagues have adapted an existing evidence-based early dyadic psychosocial intervention called “Recovering Together” to address the unique needs of people with ALS and their care-partners. This intervention, Resilient Together ALS (RT-ALS) aims to address the lack of early, dyadic interventions to teach individuals with ALS and their care partners coping skills, with the ultimate goal of preventing chronic emotional distress and improving quality of life for both patients and their caregivers.
The key components of Resilient Together-ALS (RT-ALS) intervention include:
Early intervention: RT-ALS is designed to be delivered early after an ALS diagnosis to prevent chronic emotional distress in both patients and their care partners.
Dyadic approach: The intervention targets both the person with ALS and their informal caregiver as a dyad, recognizing the interconnectedness of their experiences.
Transdiagnostic framework: RT-ALS leverages a neurodegenerative disease (NDD) transdiagnostic framework that can be applied across different NDDs.
Focus on resilience: The intervention aims to build resiliency skills in both the patient and caregiver using various techniques, including cognitive-behavioral strategies, mindfulness, and positive psychology principles.
Psychosocial support: RT-ALS addresses the psychosocial needs and emotional distress experienced by ALS patients and their care partners.
Structured sessions: The intervention typically consists of multiple sessions focusing on teaching coping strategies, mindfulness, and interpersonal skills, similar to the original Recovering Together program.
Consideration of ALS-specific factors: RT-ALS incorporates elements specific to ALS, including illness-related factors, individual and dyadic stressors, and adaptive coping strategies.
Potential for scalability: By using a transdiagnostic framework, RT-ALS has the potential for broader implementation across different settings and neurodegenerative diseases.
Future work will use feedback from patients and their care-partners to optimize the intervention and will assess the efficacy of this intervention.
Other researchers involved in this project include Heena Manglani, Emily Woodworth, Ottavio Vitolo, Maurizio Fava, James Berry, Kate Brizzi, Suma Babu, Jennifer Scalia, Doreen Ho, Elizabeth Lindenberger, J. Randall Curtis and Ana-Maria Vranceanu.
Read More
Lester EG, Vitolo OV, Flaherty A, Beaussant Y, Cramer M, Harley R, Cohen JN. “When Will All of This End?”: A 65-Year-Old Man With Amyotrophic Lateral Sclerosis and Psychiatric Distress. J Clin Psychiatry. 2023 Dec 13;85(1):23ct15038.
Rush CL, Lester EG, Manglani H, Woodworth E, Vitolo O, Fava M, Berry JD, Brizzi K, Babu S, Lindenberger EC, Curtis JR, Vranceanu AM. Resilient together-ALS: leveraging the NDD transdiagnostic framework to develop an early dyadic intervention for people with amyotrophic lateral sclerosis and their informal care-partners. Amyotroph Lateral Scler Frontotemporal Degener. 2023 Jun 22:1-8.
Rush CL, Lester EG, Berry JD, Brizzi KT, Lindenberger EC, Curtis JR, Vranceanu AM. A roadmap for early psychosocial support in palliative care for people impacted by ALS-reducing suffering, building resiliency, and setting the stage for delivering timely transdiagnostic psychosocial care. Transl Behav Med. 2023 Sep 12;13(9):722-726.
