Care practices respecting the autonomy of older people with dementia

Abstract

AbstractBackgroundHow people with dementia perceive the world has been recently described in better detail, making it easier to understand their unique situations and needs. In caregiving situations, it is desirable to understand the subjective world of people with dementia and to consider the impact of the caregiver’s approach. This study aimed to explore how care providers identify cues to understand the needs and subjective world of people with dementia.MethodsOverall, 4,000 sites (24.3% sampling rate) were selected from all small facilities (with less than 30 residents) providing dementia care in Japan. A questionnaire was mailed to caregiver leaders, and data was collected online. A two‐case vignette depicted a situation in which care staff experienced significant difficulty caring for residents with dementia; one described a resident who refused to bathe and the other a resident who walked around the facility in the middle of the night. In each situation, respondents were asked to speculate on how they would act to understand the thoughts of the person with dementia. The analysis consisted of 1) segmenting and coding the behavioural and verbal descriptions of each scene, and 2) interpreting and categorising the caregivers’ intentions.ResultsThere were 599 respondents (response rate 15.0%); of these, 566 and 558 were for the bathing and night‐time situations, respectively. The descripted responses were categorised into the following five groups. 1) Before providing specific care, it is necessary to ‘build a secure relationship’ by spending time together doing activities and talking about unrelated topics, regardless of the care. 2) To understand the resident’s thoughts and feelings, care workers ‘explore the subjective world’ by asking residents directly about their reasons. 3) Care workers also 'infer from objective information' such as care records and other sources. 4) Caregivers should ‘keep trying acceptable methods until the resident agrees to receive care’. 5) Caregivers should ‘allow things to not work out as intended’.DiscussionThe study showed that care providers use a variety of strategies to build rapport and respect the autonomy of the residents, such as exploring, speculating, suggesting, and waiting for the residents to express their intentions.