'I often think I wish he were here' Why do primary carers institutionalise family members with dementia?

Abstract

While the topic of why family carers institutionalise persons with dementia has received much publicity in the overseas literature, little is known in Australia about this issue and about the processes involved in the permanent placement of a relative with dementia in a nursing home. This paper reports on the experiences of 39 female primary caregivers (24 wives, 12 daughters and three others) who recently institutionalised their family member. The sample was recruited from a Brisbane metropolitan population and interviewed in depth about a wide range of issues pertaining to home versus institutional care. Factors explored included the service needs and service uses of primary caregivers in the period leading up to the placement, the placement procedure itself including the role of wait-lists and the extent to which carers perceived they had a choice in the selection of the long term care facility. The data show that decisions to institutionalise are not made easily and are generally only arrived at after a range of other alternative care plans are exhausted. Findings from the research are discussed against the background of current community care policy for the aged with dementia in Australia.