Equity

Purpose: The number of people aged 80 and above is projected to triple over the next 30 years. Expanding public expenditure on long-term care services has made policies encouraged informal caregiving. Burden of care describes challenges connected to informal caregiving. Dependent patients report feelings of being a burden. Few studies have focused on both the experience of caregiver burden and recipients’ feelings of burden. This study explore the experiences of old patients and informal caregivers in the first 30 days after the patient’s discharge.

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care.

This Viewpoint, written by Caroline Glendinning at the University of York and David Bell at the University of Stirling, draws on the experiences of other countries to argue that social care is a collective, welfare state responsibility rather than an individual, private responsibility.

Other key points include: 

• social care arrangements in many other countries are equal and universal: everyone is eligible regardless of wealth, and people with similar levels of disability receive care no matter where they live;