Study Finds Higher Risk of Prolonged Grief Among Bereaved Caregivers of MND Patients

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Bereaved caregivers of people with motor neurone disease (MND) are at increased risk of prolonged grief disorder compared to the general bereaved population, a new study suggests. This indicates a need for greater support for bereaved caregivers of people with MND.

The study, “Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study,” was published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

MND is a group of disorders characterized by the death of motor neurons; the most common is amyotrophic lateral sclerosis (ALS).

Caring for a person with ALS can take a profound psychological toll, as has been borne out by previous research. Less is known about the psychological impact of bereavement for ALS caregivers. For instance, it’s unclear whether bereaved ALS caregivers are at greater risk of mental health problems such as  prolonged grief disorder (PGD) — when intense grief extends for a long period of time, such that it substantially interferes with a person’s ability to function normally.

In this new study, researchers conducted an Australia-wide survey of caregivers for people with MND who had lost a relative or a friend to MND from 2016 to 2018.

In total, 393 questionnaires were analyzed. The average age of respondents was 63.5 years, and the majority were female (73.0%), retired (53.6%), widowed (71.2%), and Australian (78.7%). The most common relationships to the deceased person with ALS were as a spouse/partner (73.7%) or child (18.9%).

Respondents had acted as carers for a median of 1.5 years, and 80% had provided hands-on care for an average of 18 hours per day during the three months prior to bereavement. The average time since bereavement for respondents was about two years.

The survey asked respondents a variety of questions about a range of experiences and unmet needs, including mental health and perceived social and family supports.

Of note, PGD was assessed with the PG-13, a validated questionnaire that tests for PGD along five criteria: event (the person has experienced bereavement); separation distress (intense feelings of yearning, longing, or pain); impairment (difficulty in day-to-day life); cognitive/emotional symptoms (e.g., feeling excessively numb or irritable); and duration (symptoms must persist for at least six months after bereavement for PGD to be considered).

Of the survey respondents, 6.1% reported having high-conflict families, while 12.6% reported families with abnormally low involvement. The percentage who reported that they didn’t have enough support while acting as a caretaker was similar to the percentage who didn’t have enough support after bereavement (38.7% and 37.9%, respectively).

The prevalence of moderate to severe anxiety was 12.3%, and that of moderate to severe depression was 18.5%.

Based on the number of PG-13 criteria respondents met, they were divided into three groups: high risk (meeting all five criteria), medium risk (three-four criteria), or low risk (one or two criteria). Results from this grouping were compared with results from a similar study, which looked at the general population of bereaved people.

Compared to the general population, a higher percentage of bereaved MND caregivers were at high (9.6% vs. 6.4%) or medium risk (53.7% vs. 35.2%), while fewer were at low risk (36.7% vs. 58.4%).

“It is concerning that over 63% of MND bereaved are in the moderate or high PGD risk group when the majority of the bereaved from other causes usually experience normal grief,” the researchers wrote, noting that people with higher PGD risk likely will benefit from increased support (i.e., from professional mental health carers).

The researchers used statistical models to look for factors that were significantly associated with a higher likelihood of having a high, as compared to a low, PGD risk among the MND caregivers. Being at high PGD risk was significantly more likely among those with more recent bereavement, those who reported getting less support, those with anxiety or depression, those with conflict-heavy or low-involvement families, and those who were spouses of the person with the MND.

Understanding the factors associated with a higher PGD risk could help in the identification of individuals who require more support during bereavement.

“Our findings argue for screening for PGD, anxiety, depression and family dysfunction to be done routinely to profile this risk group [bereaved MND caregivers] that needs more than they currently receive,” the researchers wrote.