Caregivers' experience of the decision-making process for placing a person with dementia into a nursing home: comparing caregivers from Chinese ethnic minority with those from English-speaking backgrounds

Abstract

BACKGROUND: The experience of care transitions for people with dementia from ethnic minority groups has been poorly researched. Few studies have examined the decision to put someone on a waiting list for a nursing home and then actually accept a place. Many nursing homes have long waiting lists, but sometimes offers of a place are declined. Our aims were to investigate the decision-making process for placing a person with dementia on a waiting list for a nursing home, why offers of a place are accepted or declined, and the influence of cultural factors, comparing caregivers from Chinese and English-speaking backgrounds. METHODS: Semi-structured interviews with 27 caregivers of people with dementia on waiting lists or living in nursing homes (20 Chinese background and seven English-speaking background) were conducted, with thematic analysis of factors affecting caregivers' decision-making. RESULTS: Caregivers were at different stages of decision-making when they applied for a waiting list - some were ready for placement, others applied "just in case," and for some there was no waiting time because of an urgent need for placement. Caregivers' decisions were influenced by their emotions and expectations of nursing homes. The decision-making process was similar for both cultural groups, but Chinese caregivers spoke more about their sense of duty, the need for a Chinese specific facility, and declining a place because of family disagreement. CONCLUSIONS: Understanding cultural issues, including stereotypes and concerns about nursing homes, and providing better information about admission processes may help caregivers by allaying their anxiety about nursing home placement.