The Factors Associated with End-of-Life Care Preference and Advance Directives among Persons with Early Stage Dementia

Dementia is an irreversible disease, and although the drugs available can ameliorate the symptoms and slow down the progress, there is no cure for this disease. An inevitable consequence of dementia is the person’s condition will gradually deteriorate and finally decline into the end of life stage. Given the seriously lack of cognitive capacity among person with advanced dementia, this population is especially vulnerable to either overor undertreatment at the end of life. Scholars suggested that to document preferences for specific medical treatment is an ideal solution to achieving patient autonomy until the end of life, also the advance directive also can guide family to make end of life decision for patient and prevent suffering in the decision making process. Researches about the end of life focused primarily on the people with cancer diagnosis. Relatively little is known about the end of life medical treatment preference and decision making of person with early stage dementia and their family. The purpose of first year study was to explore the attitude about diagnosis truth telling, endoflife care preference, and advance directives among person with early stage dementia and their caregiver in Taiwan culture. The purpose of second year study was to explore the factors associated with the attitude regarding diagnosis truth telling, endoflife care preference, and advance directives among person with early stage dementia and their caregiver, and to test the agreement of attitude regarding diagnosis truth telling, endoflife care preference, and advance directives between person with early stage dementia and their caregiver. The purpose of third year study was (1) to develop a advance care planning model for dementia for person with early stage dementia; (2) to test the effect size of intervention model. The first year, ethnography will be conducted to develop the cultural framework. The initial theoretical sampling will include the dyad of person with early stage dementia and their caregiver in memory clinics or day care centers. Estimating 30 dyads will be recruited. However actual sampling strategies and number of interviews will be decided according to the emerged theory and the saturation of the concepts. Facetoface interviews will be used to collect the data. ATLAS.ti soft ware will be employed to constant comparative and data analysis. Second year, comparative descriptive design will be used. Estimating those 116 dyads of person with early stage dementia and their caregiver were recruited. Structural questionnaire will be used to data collection, person with early stage dementia and their caregiver will be separately interviewed by different data collectors. SPSS software will be used to data analysis; main inferential statistic method includes Cohen’s Kapp test, paired t test and multiple regression. Third year, Two to three focus group will be conducted to discuss and assess the fitness of dementia advance care planning model before intervention. One group pretestposttest preexperimental design will be conducted to test the effect size of intervention model. Estimating sample is 20 dyads person with early dementia/ family caregiver. Structural questionnaire will be use to data collection. Main inferential statistic method includes Cohen’s effect size and McNemar’s test was applied to data analysis. The study results will to extend the knowledge body of dementia care, and also will to be an evidence base for guiding the developing of dementia advance care planning and health policy decision making.

Project ID:PC10007-0344
External Project ID:NSC100-2314-B182-028