Patients With ALS, PMA and Their Caregivers Experience Enacted and Felt Stigma

Patients living with ALS or PMA and their caregivers experience stigma including social exclusion, stigmatizing behaviors, such as staring, and alienation.

Patients with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA) and their caregivers experienced varying degrees of enacted and felt stigma, according to study findings published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

Previous research suggests experiences of health-related stigma can have a negative impact on quality of life for patients with ALS or PMA and their caregivers. Given the impact stigma can have on quality of life, researchers believe stigma could be a target for improving care in this patient population and their caregivers.

Researchers in the Netherlands and the United States conducted a 2-phase mixed-methods study with the first phase occurring during the fall of 2021 and the second phase from December 2021 to March 2022. During the first phase, the researchers collected data by conducting cross-sectional surveys among 193 patients with either ALS or PMA and 87 caregivers. During the second phase, the researchers interviewed 8 patients with ALS or PMA and 11 caregivers.

The purpose of the 2 phases was to compare enacted stigma — when the patients or caregivers actually experienced discrimination — with felt stigma, which encompassed personal emotions such as shame or fear of exclusion. Secondarily, the researchers ascertained potential factors correlated with enacted and felt stigma.

Our findings reveal a range of perceptions and experiences underlying enacted/felt stigma among ALS/PMA patients and their caregivers that may serve as conversation topics in clinical practice,

In the phase 1 survey, patients reported “others feeling uncomfortable”, “being avoided”, and “people staring” as the most common experiences of enacted stigma. Nearly a third of caregivers also reported “people staring” as a common enacted stigma.

During the interviews, the most common manifestations of enacted stigma described by the interviewees included experiences of social exclusion and stigmatizing attitudes and behaviors exhibited by other people.

In the survey, patients described “feeling like a burden”, “feeling left out”, and “feeling different from others” as the most frequently expressed felt stigmas, while around 20% of caregivers also reported “feeling left out.”

During the interviews, the top 3 felt stigmas described by patients included experiences of alienation, perceived discrimination, and anticipated stigma. Shame, embarrassment, and feelings of isolation or being different or inferior to others accompanied these experiences. Caregivers stated that frequently felt stigmas included the inability to participate in social events, the inability for others to understand their burden, and feelings of being judged, avoided, ignored, or watched by others.

Both patients and caregivers responded to enacted and felt stigmas by concealing or resisting responses to them. Concealment involved many patients and caregivers socially withdrawing or keeping their illnesses secret from others. Other patients opted to resist stigma by fully disclosing their disease to others, adopting positive outlooks, or deflecting.

“Our findings reveal a range of perceptions and experiences underlying enacted/felt stigma among ALS/PMA patients and their caregivers that may serve as conversation topics in clinical practice,” the researchers noted. “Whereas tackling enacted stigma requires a change in society as a whole, ALS care professionals could take an active role in minimizing felt stigma, among others through teaching patients and caregivers resisting (coping) responses to stigma,” they concluded.

Study limitations included potential underestimation of stigma scores, the added effect of social isolation during the COVID pandemic which occurred during the study, and the overall lack of representation of patients with ALS with speech impairments, which is significantly related to stigma in this patient population. Additionally, the lack of validated outcome measures for felt and enacted stigma among ALS/PMA caregivers and the lack of assessment for psychological factors, such as depression, ways of coping, and self-esteem, also may have influenced study results.


Sommers-Spijkerman M, Kavanaugh MS, Kruitwagen-Van Reenen E, Zwarts-Engelbert A, Visser-Meily JMA, Beelen A. Stigma experienced by ALS/PMA patients and their caregivers: a mixed-methods study. Amyotroph Lateral Scler Frontotemporal Degener. Published online January 2, 2023. doi:10.1080/21678421.2022.2161911