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Aims Motor neurone disease (MND) is a rapidly progressing neurodegenerative condition; and MND patients usually rely on family members or friends as caregivers. The well-being of caregivers is a current topic of interest to policy-makers. This study aimed to assess the relationship of caregiver well-being and support provided by health and social services. Methods The survey was sent to 890 patient members of the MND Association. They were asked to give the questionnaire to their informal caregiver. The survey included a questionnaire on experiences with health and social care; the Short Form Health Survey (SF-12) to measure physical and mental health; and the Carer Strain Index (CSI). Items on support were re-coded 0 when no problem was reported and 1 where a problem had been reported and then summed for a total problem score (range 0-8). The problem score was correlated (Spearman’s rho) with MCS, PCS and CSI scores. Results A total of 434 (48.8%) caregivers participated. The majority had been a caregiver for less than 2 years and nearly a third spent more than 70 hours per week caring. Mean scores were 48.04 (sd 11.72) for PCS and 43.01 (sd 11.60) for MCS and 14.70 (sd 6.6) for CSI. The most commonly reported problems were that respondents (n=309, 75.9%) did not feel their caring experiences were valued by health and social professionals, and that they did not feel involved enough in the planning of care (n=173, 42.5%). About 62% of respondents (n=267) indicated two or more problems with support from health and social services, with only 60 (13.8%) respondents indicating no problems. The total problem score was highly correlated with CSI score (rho=0.51, p<0.001, n=363) and MCS (rho= –0.41, p<0.001, n=363). Conclusions MND caregivers report poorer mental health than the general population and substantial strain from caregiving. Most caregivers reported one or more problems with support from health and social services. Caregivers with poorer scores on the CSI and the MCS also reported more problems with support from health and social services. This indicates that better support for MND caregivers may help improve caregiver well-being and reduce caregiver strain.


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