The ALS Association

ALS Ice Bucket Challenge Progress

Recognizing the Signs and Symptoms of Depression

Depression in people with ALS and their caregivers is complex when it comes to an accurate diagnosis.

So explains dedicated and knowing social worker Stacey Asnani, MSW, LCSW, who is also the Clinical Coordinator at the Duke ALS Clinic, a Certified Treatment Center of Excellence, in Durham, N.C.

“How you assess for depression can be different for people with ALS compared to their caregivers,” Stacey offered, “In people with ALS, it’s a greater challenge to compare what’s ‘typical’ for a given individual to what is not ,” especially because life’s activities can be limited by the disease.

Reading the Signs

Common warning signs of depression, Stacey explains, include feelings of prolonged sadness, guilt, sleep disturbance, shifts in appetite, and greater irritability when it comes to interactions in daily living. Unresolved feelings of unhappiness ─ sadness and anger that last more than two to four weeks ─ can send up a red flag that depression is at work.

“Depression can impact daily functioning,” Stacey said. “Diagnostic accuracy requires teasing apart what is symptomatic of ALS from the brain disorder known as depression.” Is it typical, for instance, for a person with ALS to nap twice a day? “Fatigue could be emblematic of depression but maybe not,” Stacey said.

Careful and detailed diagnostics must take into account “timelines” for anxiety, grief, and a serious illness.

“With ALS caregivers there’s a certain amount of grief, a sense of loss, that is to be expected,” says Stacey, who is highly attuned and medically trained to assess people with ALS and screen the people closest to them for help with possible depression, including referrals to resources.

For a newly diagnosed family, the situation ─ the timeline ─ for expression of grief is different compared to a family deep into the ALS journey. “This can direct what you’re looking for in terms of symptoms,” says Stacey, whose work is designed to help people with ALS and caregivers cope with the intense stressors that often accompany an ALS diagnosis. For those who may want help finding professional support in their locales, the National Association of Social Workers makes “Help Starts Here” available. The website allows visitors to find assistance with depression and much more by working with a therapist in their immediate area.

Seeing the Big Picture

But it’s not just physical and medical interventions for people living with ALS that social workers provide; they also help families recognize their own physical changes, directing them toward primary physicians when necessary. As mentioned, these changes can include shifts in sleeping and eating patterns, unexplained irritability, mood swings, memory loss, and more. Social workers also help caregivers pinpoint their emotional and spiritual needs in a time of disquieting change. Communication with the treatment team or community resources is the main counter step when it comes to managing emotions.

“It’s important for entire families to communicate the way they’re feeling and for treatment teams to take a global view of people living with ALS and their loved ones. You want to get more minds involved in an open discussion for problem-solving,” she says. This helps to answer questions.

For instance, is aggression or behavioral outbursts from the person living with ALS attributable to depression or something else entirely? These reactions could potentially be part of what Stacey describes as “Frontotemporal Dementia,” a condition not uncommon in people with ALS and just one of many possible diagnostic variables.

Similarly, treatment teams can guide more comprehensively when they understand how a caregiver is responding to a loved one with ALS. According to Stacey, “It’s helpful to remember that a depressed person may be the last to recognize his/her own symptoms.” Caregivers are urged to talk about reactions to what Stacey calls common but often misunderstood “anticipatory grief,” or fear of what may occur in the future that can ─ over time ─ manifest in depression.

But there’s good news: Depression can be and routinely is effectively treated.  Know that there are people near and accessible who understand how to help, including those from ALS Association Chapters, Certified Treatment Centers of Excellence, or Recognized Treatment Centers. In addition, this four-minute podcast, “Defeating Depression,” published by the Centers for Disease Control and Prevention, offers excellent advice from highly qualified physicians.

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