40% of households with dementia patients say ongoing home care difficult: survey

MORIYAMA, Shiga -- About 40 percent of families here who are caring for people with dementia say it is difficult for them to continue providing care at home, a survey conducted by the Moriyama Municipal Government has found.

The city, which has a population of around 80,000, surveyed around 1,600 households in which people with dementia were receiving care in fiscal 2014, and recently compiled the responses it received from 795 households. It decided to conduct the survey following a case in the city in September 2013 in which an 83-year-old man murdered his wife, who had dementia. The man was handed a three-year prison sentence.

Sixteen percent of respondents in the city's survey said they provided round-the-clock care. There have been many cases across Japan in which exhausted caregivers have committed murder or have carried out joint suicide, but it is unusual for a local body to conduct such a survey in response to a particular crime.

Using the results of the survey as a guide, the municipal government is considering measures to support caregivers and to prevent a recurrence of such a crime.

Altogether, 44 percent of respondents said it would be difficult to continue providing care at home. Reasons included that they were unwell, that they felt unable to relax, and that they were anxious about the future with regard to care. Altogether, 69 percent of respondents said they "always" or "sometimes" felt the burden of providing care.

The most difficult time to provide care, according to 19 percent of respondents, was "between 6 a.m. and 9 a.m., when housework had to be done. But in households caring for people with severe dementia, around 30 percent cited the period from 12 a.m. to 6 a.m., indicating that there is a significant number of people worried about a lack of sleep from caregiving.

When asked what was causing them trouble, with multiple answers permitted, the most common responses were "the danger of (the person with dementia) falling," cited by 29 percent; "the psychological burden" at 25 percent; and "toileting assistance" at 21 percent.

Over 70 percent of people said they wanted to receive more care services than they were currently receiving. Over half requested respite care and facilities for emergencies.

It is not uncommon for caregivers to be unable to use care services as they wish to do because of the costs involved and a lack of staff at facilities that provide care. It remains a fact that many people want to enter the facilities but it is difficult for them to do so.

"We've discovered the distressing circumstances caregivers are in," commented Atsuko Sakaguchi, head health nurse at the general community support center in Moriyama. "We need to think about how to support people providing care at home."