Caregiving and respite for people with motor neurone disease: A national cross-sectional survey of experiences and challenges

Posted by Joanna Hikaka on 30 September 2026

Gauld N, Hikaka J, Newsham S, Frampton C, Mylchreest R, Broot T, Buchanan S, Buetow S. 2026. Caregiving and respite for people with motor neurone disease: A national cross-sectional survey experiences and challenges. Journal of Clinical Nursing. doi:10.111/jocn.70548

Abstract:

Aims

To ascertain care support for people with motor neurone disease encompassing formal and informal care (funded and unfunded care), residential respite utilisation, care tasks performed by family members, and experiences and challenges encountered in accessing funded care.

Design

National cross-sectional survey.

Methods

People with motor neurone disease, their family members, and bereaved family members were surveyed across New Zealand. Analysis included descriptive and multivariable statistical methods. Responses to open-ended questions were analysed thematically.

Results

Data were available from 115 people with motor neurone disease, 89 family carers and 40 bereaved carers. Care hours data represented 189 unique individuals with motor neurone disease – 115 responses from people with motor neurone disease, 35 from family carers and 39 bereaved. Most (58%) reported needing funded care but only 50% received it (median 24 h/week), 51% reporting this was insufficient. Younger age, greater disease severity and slow (versus fast) progression rate were associated with greater likelihood of receiving funded care (all p < 0.05); fewer funded hours were associated with faster progression and age over 65 years (all p < 0.05). Most people with motor neurone disease (77%) received unpaid care (median 30 h/week), rising to 90% among bereaved respondents (median 80 h/week). Barriers to funded care included assessment delays, insufficient information and unmet eligibility criteria. Inadequate care funding affected family (e.g., exhaustion, safety issues), and the person with motor neurone disease (e.g., unmet needs and safety concerns), with additional financial impacts. Many family members reduced paid work during the illness. Residential respite was used by only 15%, with multiple reasons for non-use.

Conclusion

Inadequate funded care and residential respite provision in New Zealand impose a substantial burden on families to provide unpaid care, harming both people with motor neurone disease and family members.