Family carers experience 'sense of guilt'

While carers who found it difficult to meet the needs of their relative at home sometimes experienced relief at first, it was often accompanied by more painful emotions including guilt, bereavement and loneliness.

These feelings were particularly acute among spouse carers who had to adjust to the challenge of living without their partner at home.

The findings are contained in a report, commissioned by the Alzheimer Society of Ireland and St Luke’s Home in Cork, which describes carers’ experiences following the move of a relative with dementia from the family home into nursing home care.

The report found that most carers wanted to continue to have a caring role in their relative’s life. This required good relationships with the nursing home, an informed and supportive staff, easy access to the home, as well as information about dementia and dementia care.

Prof Maura Downs, lead author of the report and chair of dementia studies at the University of Bradford, said simple steps could help ease the transition from care in the home to residential care.

“What is striking about this research is the clear commitment carers have to continuing to care for their relative after admission to long-term care, as well as a desire for their relative to experience the same standards of care they received in the family setting,” she said.

Prof Downs said family carers were better able to adjust if they felt the nursing home was of good quality and if they had the option of continuing to have an input in their relative’s care.

In general, carers felt that their role could be fulfilled by establishing good lines of communication with staff, having information and education about dementia and dementia care, and having ongoing emotional support.

The report recommends a number of steps to help carers of people with dementia.These include:

• Better resourcing of community-based services for people with dementia and their carers, so nursing home admissions are a pro-actively planned choice rather than being crisis-driven.

• Greater recognition by health authorities that carers need guidance and support in order to navigate the care system and when accessing support services.

• Campaigns to challenge the ignorance and stigma associated both with dementia and nursing home care.

• Ensuring nursing homes actively support carers who wish to remain involved in the care of their relative, while respecting the wishes of those who no longer want to play such a role.

The report also says that improved care services for people with dementia could free up significant numbers of beds in acute hospitals.

Older people with dementia who are admitted to hospital at times of crisis are often categorised as “delayed discharges” – they may be clinically ready to move on to more appropriate care settings, but no such service is immediately available.

Latest official figures compiled by the Department of Health show that up to 25 per cent of beds may be occupied in hospitals at any one time as a result of delayed discharges.

The report says smooth transition from home to long-term, appropriate residential care would benefit people with dementia and free up hospital beds.