Carers anxious to remain involved post-admission

THE stress of 24-hour care, lack of support and conflicting responsibilities all influence the decision to admit a loved one with dementia into long-term care, but most of those who do want continued involvement in their relatives’ lives.

New research – entitled Continuing to Care for People with Dementia: Irish Family Carers – has found the decision to admit relatives to care is fraught with ambivalence and carers experience a range of emotions, from a sense of relief to guilt, sadness, loneliness and loss.

Adjustment to the transition was helped by the perceived quality of care provided, and familiarity with the long-stay setting and the provision of emotional support.

The 14 family carers who took part in the study – the majority (eight) were adult daughters – were keen to stay involved in their relative’s life and care.

“This they thought could be facilitated by an accessible and welcoming care home, a communicative staff group who acknowledge and utilise their expertise and who provide information and emotional support to families,” said the report’s author, Professor Murna Downs, chair of dementia studies at the University of Bradford.

Prof Downs, who launched the research at St Luke’s Home in Mahon, Cork, yesterday said older peoples’ relatives are, in general, patient advocates “and rightly seek appropriate facilities for those whom they represent”.

By supporting a smooth transition from home to long-term residential care for the patient, and by supporting the carer through access to information and support services, it would not only help the families concerned, “but also help to reduce the number of cases where an older person with dementia ends up becoming a delayed discharge in an inappropriate hospital setting at a time of crisis.”.

The report, based on interviews with carers supplied by the Alzheimer Society of Ireland and St Luke’s Home, recommended a need for the Department of Health and the Health Service Executive to “significantly enhance the resourcing of, and access to, community-based services for people with dementia and their carers, so that nursing home admission is a proactively planned choice rather than being crisis-driven and that managers of nursing homes ensure dementia specific-training for staff.

There are 44,000 people with dementia in Ireland and 50,000 carers.

The number with dementia is expected to rise substantially.