Complexities in identifying and supporting carer needs

There is a growing body of literature around carers and informal caregiving in palliative care including a significant volume of work relating to caring for people with dementia. The CareSearch Review Collection details a wide variety of reviews in this area that covers carer topics ranging from disease specific needs and interventions to the role of telehealth in supporting carers to the utility and effectiveness of tools in measuring carer needs, carer burden and carer coping. [5]

Within this accumulating database there is still uncertainty about the most effective forms of interventions to enable and support carers to continue to care and to prevent potentially negative outcomes from caring. [6-8]

An updated systematic review suggests that there is no ‘one size fits all’ intervention to support carers. The authors noted that the evidence suggests there were differences in matching support approaches and carer needs. For example, shared learning, cognitive reframing, meditation, and computer-delivered psychosocial support appeared beneficial for carers of people with dementia while for carers of people with cancer more effective supports included psychosocial interventions, art therapy, and counselling. [9]

Studies and reviews do continue to note that there appears to be both known and unmet information needs for carers. These needs include information about the disease and the disease trajectory, what to expect associated with dying, practical knowledge about caring, and details on available services and resources. [10-11] The complexity of caregivers trying to be prepared for the death and loss while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory was identified in an Australian study which cautioned against services presuming that all family caregivers are well-prepared for the death. [12] Carers can subsequently face bereavement exhausted with few supports, limited resources and a significant proportion may develop negative psychological and social outcomes. [13]

Given an ageing population and increasing rates of dementia which could mean longer periods of caring, some carers may not be able to continue to provide care at home until death. Carers need to be able to address the complexity of transfer of caring from home to residential aged care or to other care arrangements. [14-15] Discharge from hospital or hospice to aged care is another form of transition, which can affect carers. [16]

The literature suggests that there is an incomplete evidence base associated with the needs, appropriateness of supports, and effectiveness of carer interventions. However, given the critical role that carers play in supporting people with life-limiting illnesses and in enabling them choice in their place of care, there is an ongoing need to provide information and services to carers. It is also important that their contribution not only to the person but to the community is recognised and acknowledged.