Care survey The vast majority of carers of Alzheimer's Disease patients have never received training or education, new research has found.
It also found that almost half of Alzheimer's Disease carers felt they did not have enough income to care for the patient. According to the survey, the typical carer is a woman looking after her mother in her own home, 24 hours a day.
Typically, the patient is in the moderate to severe stage of Alzheimer's Disease. However, the survey found 39 per cent of patients at the severe stages of the disease were not taking any medication.
The survey found 74 per cent of carers had never received any kind of training or education as to how to care for someone with Alzheimer's - even at the diagnosis stage. Where training was provided, it was most likely to come from the Alzheimer's Society of Ireland (ASI) - the survey was conducted by the society and the drug firm Lundbeck (Ireland).
Carers said their greatest fear for their patients was that they would accidentally hurt themselves. They also feared their patients would become physically ill or incontinent. Half of all carers also worried that their patients would wander and get lost. Memory loss was highlighted by carers as being the most problematic symptom of the disease. This was followed by loss of independence, restlessness and personality change.
The survey found that 73 per cent of patients had spent time in hospital or a nursing home. Most stays had been for over a month and had been done to give the carer a break.
An expert in old age psychiatry said this survey only showed the tip of the iceberg because these carers were already in contact with the ASI and a diagnosis of Alzheimer's Disease had already been made.
Prof Brian Lawlor, consultant in old age psychiatry at St Patrick's Hospital, Dublin, said the disease was frequently "silent, undiagnosed and undetected" and carers were providing care with even less knowledge, help or supports than those surveyed.
"The majority of these carers were female and daughters, who are stretched, burdened and often sandwiched between caring for older parents and younger children," Prof Lawlor said. "It's a 36-hour day, and it's hard to get practical support in caring for your loved one with dementia in Ireland."
ASI chief executive Mr Maurice O'Connell said the survey highlighted the need for support systems for carers in Ireland.
"It is imperative that we profile the carers' position in the community so as to ensure that they receive as much support as possible so that Alzheimer's Disease sufferers can retain a greater sense of control and therefore quality of life," he said.
Alzheimer's Disease usually affects people over 65 years. More than 35,000 people have the disease in the Republic.
