Open dialogue is key to better psychological support in ALS: Study
Flexible, personalized care found to best benefit patients and caregivers
- ALS patients and caregivers often experience anxiety and distress due to progressive functional loss.
- A new study found that flexible, personalized psychological support with open dialogue offers the most benefits to people with ALS and their families.
- Tailored interventions and not a one-size-fits-all approach are crucial for effective emotional care in ALS, the researchers noted.
Both people living with amyotrophic lateral sclerosis (ALS) and their caregivers benefit most from flexible, personalized psychological support that combines emotional care and open dialogue, a new study from Germany suggests.
Critical, the researchers say, is to create a framework that can be easily adjusted to a patient and family’s changing needs.
“Open dialogue and emotional support were key elements … and should be central to a future psychosocial intervention that is structured yet flexible,” the researchers wrote.
The study, “How can we reduce psychological burden for patients of amyotrophic lateral sclerosis and their family caregivers? – Insights from the participatory multi-method study ‘potentiALS’,” was published in the journal BMC Neurology.
ALS damages nerve cells in the brain and spinal cord, making it difficult to control muscle movement. As the disease progresses and muscle weakness worsens, ALS can take away a patient’s ability to carry out basic tasks, such as climbing steps, getting in and out of bed, or breathing independently.
Being diagnosed with ALS — typically between ages 55 and 75, though onset can be at any age — and coping with the challenges it brings to daily life can be emotionally taxing. Because patients usually retain their ability to reason, they remain aware of their progressive loss of function. This can cause anxiety and distress to both patients and their caregivers, who often are spouses or family members.
“Given the complex challenges associated with the disease, individuals with ALS and their caregivers exhibit multifaceted needs, with psychosocial needs appearing to be particularly prevalent,” the researchers wrote.
Finding out what ALS patients, caregivers say they need
To learn more about what type of psychological support patients and their caregivers prefer, and what is most helpful, a group of researchers at the University of Leipzig launched a project that involved more than 50 people affected by ALS.
Called potentiALS (NCT06441448), their study used a participatory approach, meaning patients, caregivers, and healthcare professionals were all actively involved. The participants first completed questionnaires about their quality of life and emotional well-being, then joined group sessions that introduced and tested four types of psychological support programs.
These were: cognitive behavioral therapy, or CBT, which helps change negative thought patterns; psychodynamic therapy, or PT, which explores the emotional roots of distress; acceptance and commitment therapy, dubbed ACT, which teaches people to accept what they cannot control; and meaning-centered therapy, known as MCT, which focuses on finding purpose in life despite disease.
“By actively involving these people affected alongside healthcare professionals, we were able to identify key priorities and preferences for a future psychosocial intervention tailored to their specific needs and experiences,” the researchers wrote.
Researchers explore 4 types of psychological support
Baseline data — information collected at a study’s start — were available for seven patients, whose median age was 66. All had sporadic ALS, where there’s no family history of the disease. Four had spinal onset, with the first symptoms affecting the limbs, while three had bulbar onset, where speech or swallowing are first affected. Most (83%) had mild symptoms of depression.
Of 10 caregivers, whose median age was 56, seven were spouses, two were sons or daughters, and one was another family member. About half of caregivers showed no significant distress; the rest reported mild to clinically significant anxiety or depression (18.2% to 27.3%).
Psychological and social needs were shared by 11 patients, 11 caregivers, and 14 healthcare professionals. Patients and caregivers shared different but connected needs, such as emotional support upon diagnosis, clear information about the disease, and help with paperwork.
Among patients, ACT was the most popular option, preferred by 37.5%, for psychological support and care. This was followed by CBT, favored by 31.3%, MCT, preferred by 18.8%, and PT, preferred by 12.5%.
Caregivers also most preferred ACT, or CBT — each was favored by 26.9%. MCT was preferred by 25.9% of caregiveres, while PT was favored by 14.8%.
Altogether, on average, both patients and caregivers rated the benefits of all programs highly, while noting few drawbacks.
These findings highlight the need for psychosocial interventions that are structurally organized yet flexible in their implementation, evolving in parallel with the progressive nature of ALS and the corresponding changes in patient and caregiver needs.
The healthcare professionals observed that psychological support was helpful for encouraging emotional expression and open communication. However, these professionals also noted some difficulties, such as limited time for sessions and the need to adapt the approach for patients who have difficulty speaking due to ALS.
Overall, according to the researchers, “the results advocate for a psychosocial support as part of multidimensional ALS care” — with a “focus on developing a tailored intervention that integrates individual preferences and needs of patients and caregivers.”
The team stressed a need for “personalized combinations of the therapy approaches evaluated” rather than a “‘one-size fits all’ model.”
In an “Implications” section, the team wrote: “These findings highlight the need for psychosocial interventions that are structurally organized yet flexible in their implementation, evolving in parallel with the progressive nature of ALS and the corresponding changes in patient and caregiver needs.”
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