Diana Jackson, Paul McCrone , Lynne Turner-Stokes
Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, Bessemer Road, Denmark Hill, London SE5 9PJ, United Kingdom. E-mail: diana.m.jackson@kcl.ac.uk
DOI: 10.2340/16501977-1178

Objectives: To estimate and compare the costs of informal and formal care provided to adults with long term neurological conditions and to identify characteristics associated with these costs.
Design: Cross-sectional postal questionnaire survey.
Participants: Family carers of 282 adults with sudden onset, progressive and stable/intermittent conditions were recruited through UK-wide voluntary organisations and neuroscience centres.
Methods: Carers provided demographic and condition specific information about the adults cared for. Informal care was measured with the Caregiver Activity Survey and formal service use with the Client Service Receipt Inventory. Costs were calculated and regression analyses identified demographic and clinical characteristics associated with cost.
Results: Annual informal care costs mean £82,620 (standard deviation 58,493) were 4 times higher than formal costs mean £18,117 (standard deviation 28,990). Caring for adults with sudden onset conditions and hidden/mixed impairments were both significantly associated with informal costs. Healthcare costs were significantly associated with having a sudden onset condition, greater dependency in activities of daily living and longer condition duration. Greater dependency was significantly associated with increased social care costs.
Conclusions: The cost of caring for adults with long term neurological conditions is largely borne by families. Both health and social costs are higher for more dependent patients, endorsing the importance of developing specialist rehabilitation services that reduce dependency.