Caregiver Burden Tied to Patients’ Level of Apathy in Study

Caregiver Burden Tied to Patients’ Level of Apathy in Study

Higher levels of apathy — particularly its behavioral symptoms — in people with amyotrophic lateral sclerosis (ALS) are associated with a degree of greater burden for caregivers, according to a new study.

The research, “The burden of apathy for caregivers of patients with amyotrophic lateral sclerosis,” appeared in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

Apathy is the most frequent behavioral symptom of ALS. Both apathy and cognitive impairment in patients with frontotemporal dementia (ALS-FTD) have been associated with levels of caregiver depression and burden that increase over time. As such, this suggests a “window of opportunity” for timely intervention, the study noted.

The specific features of apathy that heighten caregiver burden remain unclear. Aiming to address this gap and to determine the prevalence of apathy in ALS patients, a team at The University of Sydney assessed data from 51 patients (34 men, mean age 62.5) and their caregivers (37 women, 44 spouses/partners, mean age 60.2) recruited as part of a study investigating this symptom’s impact on patients’ quality of life.

Among patients, 73% were diagnosed with limb-onset ALS and had a mean symptom duration of 19.9 months. All underwent physical, cognitive, and behavioral evaluations — using the ALS Functional Rating Scale-revised, the Mini-Addenbrooke’s Cognitive Examination and the Motor Neuron Disease Behavioural Scale (MiND-B), respectively — at the ForeFront Multidisciplinary ALS/FTD Clinic between 2014 and 2017.

Apathy was analyzed with the Apathy Evaluation Scale (AES), a measure of its cognitive, behavioral, emotional, and nonspecific, or other, symptoms. Specifically, the cognitive domain refers to lacking goal-related thoughts; the behavioral domain includes altered behavior, such as difficulties starting and persisting with tasks; and the emotional domain is characterized by a reduced range and intensity of emotions.

Anxiety and depression were analyzed through the Hospital Anxiety Depression Scale in patients, and the Depression, Anxiety, and Stress Scale–21 (DASS–21) in caregivers. DASS-21 also assessed caregivers’ stress, while the Zarit Burden Interview was used to determine caregivers’ burden.

The results of the cognitive and behavioral scales revealed overall intact cognition and only slightly changed behavior, although nearly 18% of patients had both cognitive and behavioral problems. According to the MiND-B scale, apathy was the most common behavioral change, found in 18% of the patients. This matched results obtained through the AES scale.

Caregivers with higher burden were caring for people with greater anxiety and greater behavioral and nonspecific symptoms of apathy. However, only greater behavioral symptoms of apathy correlated with higher caregiver burden. The data further showed that these behavioral symptoms were significantly associated with a patient’s level of depression.

Overall, “the caregiving required to manage patients’ inability to initiate and complete tasks undoubtedly result in heavier burden of care,” the scientists wrote. “As such, early identification of apathy and commencement of appropriate caregiver support should be incorporated in routine ALS patient care,” they added.

Of note, the team cautioned that the findings need to be validated in future studies. Also, results may have been influenced by not including patients with severe physical or cognitive/behavioral limitations and caregivers with subsequently higher levels of burden.


  1. David Buschhorn says:

    Did the apathy come before or after the diagnosis that they have an incurable, untreatable disease that will soon kill them horribly?

    Pretty sure apathy comes along with clinical depression 🙂 It’s probably harder to treat that kind of depression when there’s a real issue causing it, other than brain chemicals.

  2. Dave Reckonin says:

    Weird isn’t it?
    I just can’t understand why ALS patients aren’t doing song-and- dance routines, and stand up comedy.
    Funny old world.

    • Wish I could get up and dance! – or even get up!! So many people do not understand this disease. Some more publicity in the media about this disease so the general public have some inkling!


    I really don’t understand why ANY money for this disease is spent on studies such as this. Seems pretty obvious to me. Diagnosis of this disease is absolutely devastating. It changes EVERYTHING for those with ALS and those who are in relationships with ALS “victims”. Of course there are higher levels of apathy, frustration, sadness and anger. If the goal is to mitigate levels of apathy in ALS patients & reduce the burden on caregivers, etc, please stop wasting ALS research dollars on studies like this and spend it on finding a CURE!

  4. Great information on the ravages of ALS patient and the effects on the caregiver. My husband died of this disease. The hard part is getting the diagnosis for the patient. My husband was diagnosed 6 months before his death by the VA even though he had been having symptoms for 4 years.

    • Certainly after – I am deteriorating at a rapid rate with ALS – thank goodness for my husband – he at present is my Carer. Medication helps with pain. Communication with my family (all interstate) keeps me going.

  5. Becky Monson says:

    I definitely agree that these trials are ridiculously long and most are wothless. I also believe in right to treatment before the trials are done. Really! Safety! These people are frisking dying and suffering 24/7. Thank you big pharma and government for all of your empathy regarding people’s life and death choices! My husband has had als for 5 years. He is declining slower than a lot of people, I know! But, the apathy is horrible. I feel, at times, like I have already lost my Scott. We have been together since high school. He tries but can’t seem to muster up interest in anything. I need some advice. He is a surgeon, hunter, fisherman, among so many other things. I would just like to see him get excited about anything and see his old smile. Dances and jigs are definitely not in the picture smart ass! Kidding! Just love this man so much but this apathy is one of the hardest symptoms to handle. Thank you all fir letting me vent and any advice would be greatly appreciated. Good luck to you all!

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