Respite for patients and carers in neurodegenerative disease: a grounded theory study

Neurodegenerative diseases (NDDs) are incurable and debilitating, and result in progressive deterioration of cognitive (dementias) and physical (ataxias) functioning. People with these conditions have constantly changing needs due to steady deterioration, with episodes of rapid decline,1,2 which places a heavy burden both on patients and their carers. Greater emphasis is now placed on keeping patients in their own homes in order to meet their personal wishes and reduce hospital/institutional costs.3,4 Respite can offer several avenues of support including rehabilitation, maximisation of functionality and improved quality of life for the patient. It can also be crucial in enabling carers to continue in their caring roles.