Neurological disease and neurodisability cause significant disruption to families, who come under substantial pressure to adapt to changes in the condition over time. Family members are often disadvantaged in their coping because of infrequent access to professional consultations, and by default carers tend to neglect their own needs. One threat to relationships can be a pull towards acting as the main carer, even carrying out personal care tasks, especially if the family unit resists extending its boundaries to include paid carers. We discuss the distinct challenges that families are faced with at different stages of disease progression (emerging, diagnostic, longterm adaptation, crisis, chronic, and terminal) for one particular condition (multiple sclerosis or MS). A number of recommendations are made for supporting family members in the form of a ‘family care pathway’ for neurology and neurodisability.
Social Care and Neurodisability – Emerald Publishing
Published: Apr 28, 2010
Keywords: Multiple sclerosis; Neurodisability; Carers; Social care; Family members; Support