Early stage memory loss interventions: utilization, impact, and the experience of living alone.

Thesis (Ph.D.)--University of Washington, 2016-08

University of Washington Abstract Early stage memory loss interventions: utilization, impact and the experience of living alone. Anita Marie Souza Chair of the Supervisory Committee: Professor, Rebecca Logsdon Psychosocial and Community Health Nursing Alzheimer’s disease and related dementias (ADRD) are an increasing public health concern. Currently, over 5 million Americans are living with Alzheimer’s disease. Receiving a diagnosis of ADRD is life altering and changes the anticipated trajectory of one’s life. Currently, there is no medical treatment that can delay or stop the progression of these diseases. Increasingly, research has focused on psychosocial education and support group interventions for individuals in the early stages of ADRD. These interventions offer individuals an opportunity to learn about their diagnosis and find peer-based support. These groups represent a promising intervention that can help individuals adapt to the diagnosis. This dissertation comprises three distinct manuscripts that focus the current state of research in early stage psychosocial support and offer new knowledge about the characteristics of people who participate in these programs. Psychosocial support for individuals with early stage memory loss; a critical review of the literature, is the first manuscript. This paper reports the findings from a systematic review of the scientific literature on early stage memory loss interventions. Ten studies were included after a three step process of evaluation. The content of the interventions was similar in scope; most investigations included a weekly module of education alone with a professionally facilitated peer-based support group discussion. Results showed that across studies sample sizes were generally small, ranging in size from 24-330. The studies occurred in both urban and suburban environments. However participant samples had limited heterogeneity amongst participants. The vast majority of the participants identified as being Caucasian. Three important gaps were identified in this review: limited person centered programming, racial and socioeconomic disparities in utilization, and the exclusion of individuals who live alone without a care partner to accompany them to a program. The need for evidence based psychosocial supports will continue to grow as more individuals are diagnosed with ADRD. These interventions need to be inclusive and adaptive to the diversity of populations impacted by an ADRD diagnosis. As the demand and utilization of early stage interventions grows, additional focus on the measured outcomes of these interventions is warranted. Manuscript two, The impact of an outcome: moving towards meaningful measurement in early stage dementia interventions, is a systematic review that examines the current focus of outcome measurement in early stage interventions. Eight studies met inclusion criteria and were abstracted to identify and evaluate participant outcome measures. This manuscript discusses characteristics of the measures, identifies participant and systems level characteristics that make selecting outcome measures in early-stage ADRD challenging, and provides recommendations about future directions of outcomes measurement. The third manuscript, Living alone with dementia: the effect of self-efficacy, mood, and quality of on the concept of well-being, presents the results from an examination of baseline data collected from 144 individuals with early stage ADRD who participated in a randomized control trail of a psychosocial early stage support group. The aim of this investigation was to determine if there were differences in overall well-being (assessed by self-reported measures of self-efficacy, mood, and quality of life) among persons living alone versus those living with a partner. A multivariate analysis of variance was executed on the two groups. Results indicated that there were no significance differences in the groups on the three outcome measures. Analysis of demographic data showed that those who lived alone were older and more likely to be female. This study contributes valuable knowledge about the individuals who seek psychosocial support services and illuminates gaps which can be addressed through additional research. In sum, these three studies examine issues that are critical to elevating and expanding the scope of psychosocial intervention research in early stage ADRD. They contribute a unique perspective and new information to expand our understanding of the interventions and the unique role for nursing science researchers in the realm of psychosocial research.