A hopeful outlook may help combat mental health distress in ALS

Loneliness and regret are key drivers of mental health distress among people with amyotrophic lateral sclerosis (ALS), according to a new survey — but the researchers also found that maintaining a hopeful outlook may help those with the rare disease to combat anxiety, depression, and frustration.

The survey, involving more than 200 people affected by the neurological disease, was carried out by Bionews, the parent company of ALS News Today. While the ALS patients taking part in the study ranged in age, hope remained stable over time, the research team noted.

Overall, per the team, the findings highlight the types of support that are most lacking for the ALS community, and demonstrate a need for more personalized care tailored to each individual’s situation.

“Understanding which emotions actually drive mental health burden can allow clinicians to design interventions tailored to specific experiences like fear of losing one’s voice, grief over physical decline, loneliness, or loss of independence, rather than defaulting to broad-spectrum treatments that may miss the mark,” Marcella Debidda, PhD, president of patient insights and clinical solutions at Bionews, said in an interview with ALS News Today.

Recommended Reading

Oct. 30, 2023 News by Andrea Lobo, PhD

Survey offers look at life, treatment priorities of those living with ALS

A progressive disease, ALS causes muscle weakness and gradually interferes with a person’s ability to perform everyday activities. Research into ALS tends to focus on how the disease drives physical disability — but living with ALS can also carry a heavy mental health toll, which is less often addressed, the team noted.

Looking at the ’emotional’ impact of ALS

“Physical progression of ALS is well documented, but the psychological experiences of patients remain inadequately examined,” Debidda said. She noted that most people with ALS “are being treated for symptoms that can be measured and billed for,” and clinical care too often overlooks the mental health impact of the disease.

“Clinical practice should move toward emotional assessment alongside symptom assessment,” Debidda said.

This survey aimed to learn more about the mental health journeys of those affected by ALS. A total of 238 people participated. Nearly two-thirds were people who themselves were living with ALS, and most of the rest were caregivers or family members.

The survey found that many ALS patients deal with frequent mental health struggles. Nearly half (42.1%) of respondents said they often or always feel frustrated, while 26% reported frequent anxiety and 18% reported frequent depression. The researchers noted that all of these issues were closely linked — for example, patients who often felt depressed were much more likely to also say they frequently felt anxious or frustrated.

“Emotions … often operate as linked systems. In our research, we saw that for frustration, anxiety, and depression,” Debidda said.

The researchers said that these high rates of mental health problems highlight the importance of regular mental health screening in people with ALS so that appropriate support can be given when needed.

Recommended Reading

April 30, 2024 News by Andrea Lobo, PhD

Rural living may widen gap between early ALS symptoms, diagnosis

Mental health distress, hope found to coexist

Still, while negative feelings were common among ALS patients, hope and gratitude were even more likely to be found: Nearly half (45%) of patients said they always or often feel hopeful, and two-thirds (67%) said they always or often feel grateful.

In statistical analyses, patients who reported more hope or felt grateful more often were less likely to report mental health problems. According to the researchers, this implies that actively fostering a sense of hope and gratitude may help holistically improve mental health for people with ALS.

”Hope isn’t ‘looking on the bright side’ or denial: It’s more like the capacity to hold the hard truth and still have something pulling you forward.

Debidda stressed that most patients who reported frequently feeling hopeful also reported plenty of negative emotions, too.

“In our data, 69% of people reporting high negative emotions also reported high positive emotions at the same time,” she said, adding that hope seems to behave as a protector of hard feelings.

“Hope isn’t ‘looking on the bright side’ or denial: It’s more like the capacity to hold the hard truth and still have something pulling you forward,” she added.

The scientists also identified a few other factors that seem to have a key influence on ALS mental health outcomes. Chief among them was loneliness: Statistical analyses showed that patients who report more loneliness are more likely to experience frequent frustration, anxiety, and depression. This implies that support structures aimed at fostering a sense of community and reducing loneliness may be invaluable for helping ALS patients cope with mental health struggles.

Importantly, Debidda and her team have also identified loneliness as a key predictor of mental health distress in people with other rare disorders.

“Loneliness, not depression, is the most consistent predictor of mental health distress in the rare neuromuscular diseases we studied and may represent a logical starting point for community-based intervention,” Debidda said. “And loneliness is not associated with just one emotion, it correlates with higher anxiety, higher depression and higher frustration all at the same time.”

Another key factor affecting mental health was regret. Patients who report more regret also generally reported worse depression. This suggests that interventions to help people make peace with the past, such as structured counseling, may be beneficial for ALS patients.

Recommended Reading

March 15, 2018 News by Larry Luxner

‘A Disease May Be Rare, Hope Should Never Be,’ Says Boy with SMARD at Connecticut Rare Disease Day Event

Patients’ concerns found to vary by age

Because the physical symptoms of ALS generally worsen over time, scientists might expect that the mental health challenges of ALS would become more severe the longer someone lives with the disease. However, results from this survey suggested that’s not the case — in fact, mental health challenges were similar at all stages of the disease. Hope also remained stable over time, according to the researchers.

“Our data show that in ALS, [hope] doesn’t erode with time since diagnosis, which tells us it’s something that can be cultivated rather than a reserve that simply runs down,” Debidda said.

While disease duration did not play a role, the researchers found that mental health outcomes were strongly influenced by patients’ age. Rates of anxiety and depression were markedly higher among adults between the ages of 45-64 compared with those 65 and older. Younger adults were also much more likely than older patients to report severe financial worry.

This likely reflects differences in life stage, the researchers said, with working-age adults being more likely to face concerns such as job loss, financial obligations, caregiving responsibilities, and supporting children or other dependents — pressures that are less common among those who are retired.

“The message here isn’t so much ‘younger patients are more distressed’; the message is that they’re distressed about different things, and support has to match,” Debidda said. “A retiree may need community and connection; a 45-year-old may need income protection, employment navigation, and childcare help before peer support even becomes reachable.”

All in all, the survey underscores the importance of emotional support for people affected by ALS, while also showing a need for this support to be individualized to each person’s unique situation, the researchers concluded. Debidda said it’s important that ALS clinicians maintain an active dialogue with patients about their individual needs so that the best support can be offered.