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Anxiety is common among people newly diagnosed with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) and their family members, a small study from Sweden reports.
However, symptoms of anxiety tended to ease about six or so months later for patients, while they continued to affect relatives, many who are caregivers, two years after the diagnosis. Depression was less common, but its symptoms held stable for affected patients and relatives, underscoring the importance of ongoing support and attention to mental health.
“A better understanding of and knowledge on the prevalence of anxiety and depression from the time of diagnosis and over time &#8230; will probably contribute to better and more efficient care during the disease trajectory,” the researchers wrote.
The study, “<a href="https://www.sciencedirect.com/science/article/pii/S0022510X23022414">Symptoms of anxiety and depression in patients with amyotrophic lateral sclerosis and their relatives during the disease trajectory</a>,” was published in the <a href="https://www.sciencedirect.com/journal/journal-of-the-neurological-sciences">Journal of the Neurological Sciences</a>.
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<h3>Anxiety evident in 43% of ALS patients, 58% of relatives soon after diagnosis</h3>
<a href="https://alsnewstoday.com/causes-of-als/">ALS damages nerve cells</a> in the brain and spinal cord, making it difficult to control muscle movement. As the disease progresses, a patient’s ability to perform basic tasks, such as walking up steps, getting in and out of bed, or speaking audibly, become more and more impaired.
Being <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> and watching how it affects daily life can be taxing. Because patients usually retain their cognitive skills, they are aware of their progressive physical loss, and the <a href="https://alsnewstoday.com/als-mental-health/">distress and mental health challenges</a> that brings both them and their relatives.
To learn more, researchers with Uppsala University followed 33 newly diagnosed patients — 28 with limb-onset and 5 with bulbar-onset disease — and 33 of their chosen family members for two years. Among relatives, 25 were a patient&#8217;s spouse, six were a patient&#8217;s children, one was a parent, and one a sibling.
Participants were asked to fill out the self-reported Hospital Anxiety and Depression Scale (HADS) shortly after the diagnosis and again at six, 12, 18, and 24 months later. This two-part test assesses the presence and severity of anxiety and depression in the past week, and total scores for each part range from zero (no distress) to 21 (maximum distress).
Assessments taken between one and three months after a diagnosis showed symptoms of anxiety in almost half of patients (45%) and a majority of their relatives (58%), indicating that anxiety at this stage “is relatively common,” the researchers wrote.
Patients&#8217; average level of anxiety severity decreased significantly, starting around six months after diagnosis. But scores remained stable at high levels among family members, suggesting that “the disease affected the relatives’ psychological well-being more,” they wrote.
Depression was less common than anxiety in these groups, affecting 13% of patients and 29% of relatives in the initial months. In both groups, the average score of its severity was similar (4.6 vs. 5.2 points) and did not change significantly over time.
“Relatives are often involved in the patient’s care, taking great responsibility for them and dedicating many hours to help,” the researchers wrote. However, “few relatives received antidepressant and/or anxiolytic [anti-anxiety] treatment.”
<h3>Disease&#8217;s progressive toll not tied to an increase in anxiety or depression</h3>
Physical function was assessed using the revised ALS Functional and Rating Scale (ALSFRS-R). While scores significantly decreased over the two years of follow-up, patients&#8217; increasing physical difficulties did not link with more symptoms of anxiety or depression.
“It could … be that during the disease trajectory, the patient adapts to the disease and the changes that result [from it], which may explain the decrease in symptoms of anxiety despite the increased physical impairment,” the researchers wrote.
While the number of people involved was small, study “results showed that many patients and relatives suffered from symptoms of anxiety quite soon after the diagnosis, and that many relatives had symptoms of anxiety during the disease trajectory,” the researchers concluded.
“This highlights the need to continuously measure symptoms of anxiety/depression in patients but also to pay attention to symptoms among relatives,” they added.

Anxiety high in ALS patients, family members in months after diagnosis

This past Sunday dawned crisp and cool on the eastern shore of Maryland, with a hint of light rain falling from a few clouds dappled against an otherwise vivid blue sky. I dressed to be outdoors, making sure my orange <a href="https://iamals.org/action/request-a-panel/">Tim Lowrey Panel</a> T-shirt was visible under my jacket, and set out for the morning.
As I pulled into a parking lot just outside downtown Centreville, a family walking by pointed at my license plate, which reads END <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, and cheered. I smiled back, excited, and parked my car, joining the dozens of other people walking and wheeling toward a field at the Route 18 Park.
We were all gathered for the <a href="https://www.als.org/dc-md-va/events/walk-defeat-als-chesapeake-bay">ALS Association’s Walk to Defeat ALS Chesapeake Bay</a>, an event to build awareness and raise funds. It brought several hundred community members together to reiterate our shared commitment to finding <a href="https://alsnewstoday.com/experimental-treatments-for-als/">ALS treatments</a> and cures. Though the cause is serious, the atmosphere on Sunday was celebratory; we were all together and united in taking action toward our shared goal of ending ALS.
And community is what this walk was all about. As I approached the large, grassy field where the <a href="https://www.als.org/dc-md-va">ALS Association</a> had assembled tents and a stage, I immediately saw friends I knew, teams of supporters in colorful T-shirts, and walk participants in power wheelchairs and on foot. I saw teams with dogs, with young babies in strollers, and with kids on their shoulders. I was instantly happy that I’d joined; the feelings of love and hope were palpable.
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I was walking to support my friend Tim’s team. He was walking in memory of his wife, Mary Ann, who died from ALS on New Year’s Day in 2019. Upon arriving, I met one of her cousins along with a dearly loved caregiver, who were there supporting and remembering Mary Ann as well.
Because I wanted to share Sunday’s experience in this week’s column, I started exploring the grounds after I greeted Tim and his team, saying hello to other participants. That&#8217;s when I was reminded of the true power of this community. As I introduced myself and asked about those participants&#8217; stories, I got (and gave) hugs to total strangers and had the chance to hear about their journeys and share mine. I met people <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, family caregivers, their lifelong friends, and others who are united in their devotion to keep our loved ones alive.
<h3>Why I remain active in the community</h3>
One might think that after losing <a href="https://alsnewstoday.com/columns/how-als-muscle-weakness-made-my-husband-stronger/">my late husband, Jeff</a>, to ALS in 2020 that I’d want nothing more to do with the disease. Many surviving loved ones don&#8217;t, and that&#8217;s a choice I understand and respect.
In my case, however, healing is the reason I and so many thousands of others who&#8217;ve lost our loved ones stay in the fight. It gives me a sense of purpose and meaning to stay active in the <a href="https://alsnewstoday.com/forums">ALS community</a>, helping to advocate for awareness, treatments, and cures as well as to support others with ALS and their families. There&#8217;s nothing so meaningful to me as spending time with those who understand the ALS journey.
<a href="https://www.als.org/blog/is-als-really-that-rare#:~:text=With%20a%20prevalence%20rate%20(number,identified%20as%20a%20rare%20disease.">ALS is considered a rare disease</a>, but in my opinion, it’s really not. Ask most people, I find, and they&#8217;ll know someone who&#8217;s living with or has died of ALS. Still, it’s not often that groups of us who&#8217;ve been affected by ALS have the opportunity to be together. When we are, I&#8217;ve found the atmosphere is comforting and kind, full of recognition and understanding. I think that’s one reason that Sunday felt so special.
The trait we all had in common that day, and every day, is shared hope. The ALS community is full of individuals from all backgrounds and walks of life, and what unites us is our fervent belief — and willingness to support one another — in ending a disease that takes so much from so many.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: caregivers

Anxiety high in ALS patients, family members in months after diagnosis

How hope is everywhere when our community gathers