A Descriptive Study of the Nutrition-Related Concerns of Caregivers of Persons With Dementia

Abstract

Objective: Family caregivers are the mainstay of caregiving support to persons with dementia, and often care for a family member with dementia for a decade or more prior to institutionalization or death. Malnutrition, including weight loss, is common among older adults with dementia, occurs throughout the disease process, and is associated with institutionalization and death. Nutrition education for caregivers is an important aspect of addressing the care needs of adults with dementia; however, nutrition education research in community-based persons and families experiencing dementia is minimal to non-existent. The need for tailored education resources ranks as highly important among caregivers; however, the nutrition concerns of caregivers in the home have not been identified. The purpose of the current study was to gather descriptive data about the nutrition-related concerns of family caregivers of persons with dementia. Design: A qualitative descriptive design using semi-structured interviews of caregivers of persons with dementia (n = 4) was used to collect the data. Thematic and content analysis was used. Results: Family caregivers experienced nutrition-related concerns and described a need for nutrition education to support the caregiving role. Four themes emerged: (1) meal preparation and food choices; (2) lack of appetite and eating behaviors; (3) making sense of existing nutrition information; (4) searching for reliable nutrition information. A discussion of each theme, including exemplars, is presented, along with suggestions provided by participants regarding how to address existing nutrition education resource needs.Conclusions: Issues surrounding care often are complex and require accurate and tailored information. Findings from the current study provide rich, valuable data regarding the needs of family caregivers with respect to nutrition concerns, allowing for the development, design, testing, and delivery of nutrition education resources and strategies.

A Biopsychosocial Model of Mealtime Management in Persons with Dementia, an Asset-Based Approach to Patient-Centered Care

“…Caregiver education, as well as accessibility of caregiver education, is an important component when designing appropriate care for PWD. Availability of education is crucial for caregivers to meet the changing needs of PWD; however, there currently exists minimal to no standardized nutrition education for community-dwelling PWD and their caregivers [ 40 ]. Informal caregivers have expressed need for the availability of nutrition-based education in four main domains: meal preparation/food choices; addressing the PWD’s lack of appetite and altered eating behaviors; interpreting and synthesizing existing nutrition information; and identifying reliable nutrition information [ 40 ].…”

“…Availability of education is crucial for caregivers to meet the changing needs of PWD; however, there currently exists minimal to no standardized nutrition education for community-dwelling PWD and their caregivers [ 40 ]. Informal caregivers have expressed need for the availability of nutrition-based education in four main domains: meal preparation/food choices; addressing the PWD’s lack of appetite and altered eating behaviors; interpreting and synthesizing existing nutrition information; and identifying reliable nutrition information [ 40 ]. Through consistent education addressing the changing nutritional needs and capabilities of PWD, healthcare professionals may play an integral role in alleviating caregiver burden that is associated with lack of education surrounding mealtime management [ 41 ].…”