The psychological impact of MND on patients and carers

Emotional Lability in MND: Relationship to cognition and psychopathology and impact on caregivers

“…Interviews with carers also demonstrated clear evidence of psychopathology with 20% reporting depression from moderate to severe levels on the BDI, while 85% and 72% showed state and trait anxiety scores over the clinical cut off, respectively. As for the relationship between patients and carers mood, some data in the literature have reported an association [23][24][25][26][27][28] but despite high levels of affective conditions in our patients and carers we did not find an association.…”

“…In recent studies depression has appeared to be relatively more common (prevalence rates up to 50%), as were other forms of psychological distress, and was not associated with illness severity and functional status [22]. Estimated prevalence rates for anxiety have ranged 11-30% [23][24][25]. A number of studies have shown the importance of including patients' families in psychological research on MND.…”

“…In addition Gauthier et al [27] found that patients' level of disability and caregivers' depression were related with caregivers' perception of burden. While Goldstein [23] showed that carers also demonstrated signs of anxiety and depression, with the latter correlating with aspects of the patients' functional impairment. Carers depression and strain appeared to be related to their attributional style and perceived strain was greater in carers who viewed their partners' illness as having a more global impact on their lives [28].…”

The Dynamics of Quality of Life in ALS Patients and Caregivers

“…In contrast, caregivers reported significant decreases in QOL, particularly regarding physical symptoms, suggesting that ALS caregiving could result in decreased quality of life over time. Previous investigations suggest that caregivers' levels of depression and anxiety are closely related to the degree of the patient's incapacitation [47][48][49][50]. Similar "costs of caring" have also been examined in those who provide treatment for individuals experiencing a traumatic event, such as therapists and doctors.…”

Bereavement support and prolonged grief disorder among carers of people with motor neurone disease

“…MND has no known cure; the complex nature of the illness and rapid deterioration at end-of-life can be traumatic for carers unprepared for the final phase (Goldstein et al, 1998) and prognosis is poor, with average survival from diagnosis approximately 14 months. Carers of people living with MND (plwMND) have likened their experience of caring as akin to a series of bereavements with fragmented, poorly communicated and generally dissatisfying service provision meaning these carers are under considerable strain (Aoun et al, 2012).…”