Meals at home for persons with late-stage dementia

Amella, Elaine

Abstract

Dementia, an irreversible and progressive loss of memory and function, afflicts over 4 million Americans, is the 7th leading cause of death in those over age 65, and is a terminal illness with a survival time from diagnosis to death of 3.1 to 3.5 years. Late-stage care reflects palliative end-of-life strategies as persons lose all abilities. The last loss is the ability to self-feed; this responsibility must be assumed by a caregiver or the person with dementia would starve. However, the majority of persons with dementia receive care in the home (75%) from a caregiver who may not be prepared for this responsibility. Related to intrinsic and extrinsic changes seen as the disease progresses, an inability to adjust to either excessive or inadequate levels of stimuli at meals results in disruptive behaviors by the person with dementia that inhibit the caregiver's ability to assist and subsequently diminishes intake. Thus, the possibility of nutritional decline is very real with subsequent morbidity and premature mortality. Although description and testing of nutritional interventions occurred in nursing homes, no study could be found that described an intervention for in-home mealtime care. The proposed pilot study tests the efficacy and feasibility of a mealtime intervention-a training video with pamphlet-that can be used by in-home caregivers to accomplish two specific aims (outcomes): 1) decrease mealtime disruptive behaviors and 2) maintain or increase food intake. Mealtime behaviors will be measured using the EdFED-Q and nutritional status will be measured using BMI and a Three-Day Diet Recall. Using two groups of 20 dyads (caregivers and persons with late-stage dementia) (N=40), a 2 x 4 (treatment x time) randomized, controlled, between-group, repeated measure design will be used at 4 data points over 12 weeks (initial, 4, 8, and 12 weeks) to pilot test the intervention. Alpha will be set at .05 and hypotheses will be tested using ANOVA and MANOVA. Research assistants (undergraduate students) who will collect data at weeks 4, 8, and 12 will be blinded to treatment. This study has relevance for home health care providers, hospice staff, and support groups leaders as it may improve the quality of end-of-life care for persons with dementia. Findings from this pilot will be used to support the submission of an R01 concerning end-of-life dementia care at home.