The essential structure of the lived experience of the caregiver for the person with dementia at mealtime in the home setting

Abstract

Caring for a loved one with dementia is a complex experience. The relentless nature of 24 hour care giving responsibility for the person with dementia, while observing the progressive loss of cognitive and functional abilities and even change in personality itself, can be overwhelming. The progressive loss of behaviors observed in persons with dementia includes alterations in eating habits and the ability to feed oneself. The ritual of giving and accepting of food involves both the efforts of the caregiver in meeting the fundamental nutritional needs of the person with dementia, as well as serving as a social interaction between the two. The purpose of this phenomenological study was to provide a full, rich description of the experience of the caregiver of the person with dementia at mealtime in the home setting. Through a deeper understanding of the mealtime experience from the perspective of the caregiver, nurses will be able to provide appropriate, sensitive interventions to support those afflicted with dementia and those striving to care for them. In this study three family caregivers participated in audiotaped interviews describing their experience feeding the person with dementia at home. Four theme categories were identified by phenomenological data analysis of the interviews. These were: (1) Food Preserves Life; (2) It Gnaws At You; (3) Slipping Away; (4) Being Alone In It. These categories illuminate the essential structure of this experience for caregivers who struggle on a daily basis to nourish and protect their loved ones who suffer the ongoing deterioration of dementia.