Meals at home for persons with late-stage dementia

描述(申请人提供)：痴呆症是一种不可逆转的渐进性记忆和功能丧失，困扰着400多万美国人，是65岁以上人群的第7大死因，是一种晚期疾病，从确诊到死亡的生存时间为3.1至3.5年。晚期护理反映了临终时的姑息策略，因为人失去了所有的能力。最后一个损失是自给自足的能力；这一责任必须由照顾者承担，否则痴呆症患者将挨饿。然而，大多数痴呆症患者(75%)在家中接受照顾者的照顾，而照顾者可能没有准备好承担这一责任。随着疾病的发展，与内在和外在的变化有关，无法适应进餐时过量或不足的刺激水平会导致痴呆症患者的破坏性行为，从而抑制照顾者的协助能力，从而减少摄入量。因此，营养下降的可能性是非常真实的，随后会出现发病率和过早死亡。虽然在疗养院对营养干预进行了描述和测试，但没有发现任何研究描述了对家庭用餐时间护理的干预。这项拟议的试点研究测试了用餐时间干预的有效性和可行性，家庭照顾者可以使用这种干预方法来实现两个特定目标(结果)：1)减少用餐时间扰乱行为；2)保持或增加食物摄入量。用餐行为将使用EdFED-Q来衡量，营养状况将通过BMI和三天饮食召回来衡量。使用两组20对(照顾者和晚期痴呆症患者)(N=40)，2×4(治疗×时间)随机、对照、组间重复测量设计将在12周(初始、4、8和12周)的4个数据点用于初步测试干预。α将设置为0.05，假设将使用ANOVA和MANOVA进行检验。将在第4周、第8周和第12周收集数据的研究助理(本科生)将对治疗失明。这项研究对家庭保健提供者、临终关怀工作人员和支持小组领导人具有相关性，因为它可以提高痴呆症患者的临终护理质量。这一试点的结果将被用来支持提交关于家庭临终痴呆症护理的R01。

DESCRIPTION (provided by applicant): 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.