Supporting Carers

Carers have cropped up in the many of the publications and reports reviewed for this online resource.  Several of the reports identify support for carers as an important topic for policy and service provision, supported by findings from studies on the costs of dementia which show that much of the cost of care falls on family carers. The publications reviewed show that alongside people with dementia, health care professionals, and the general public, family carers of people with dementia responded to surveys and participated in interviews and roundtable discussion, providing valuable information and views on a range of topics, for example, their attitudes to care homes or housing issues. Several publications grapple with the question of how best to support family carers and their relatives with dementia. However, only one report focused specifically on family carers and what it is like for them when a relative they are caring for is admitted to a nursing home. This report is summarised below. 

Continuing to Care for People with Dementia: Irish Family Carers’ Experience of their Relatives Transition to a Nursing Home

Argyle, E., Downes, M, Tasker, J.
Alzheimer Society of Ireland

The majority of people with dementia live in their own homes and family carers provide the main bulk of care for them. However, a time often comes when a person with dementia has to move into a long-stay care setting.

But what are the experiences of family carers in ROI when a relative with dementia moves into a long-stay care setting? This is the primary focus of this research by Argyle, Downes and Tasker (2011). It found a range of factors accumulated and contributed to the decision to pursue long-stay care, with health professionals often being the one to initiate discussions around this.  Family carers experienced conflicting emotions, from relief through to more painful emotions of guilt, grief and loneliness, with varying intensities. How well they adjusted to their relatives’ admission to long-stay care was influenced by the perceived quality of the long-stay care setting, their familiarity with it and receipt of emotional and spiritual support. Following transition, the carers’ role was characterised by both continuity and change. The research indicated that all carers wanted to continue to participate in the long term care of their relative and reported that good lines of communication with staff, having information and education about dementia and dementia care and having ongoing emotional support were essential.