An Exploration of the Factors Related End of Life Care Decision Making for Persons with Dementia

Because of irreversible disease process, even drugs for the treatment dementia have been shown that these apparently stabilize symptoms in the short term, there is no cure for dementia, progressively deteriorating into advanced dementia are inevitable. Scholars suggested that providing palliative care with comfort and good quality of life to advanced dementia are the priority of treatments. Given the lack of cognitive capacity, this population is especially vulnerable to either overor undertreatment at the end of life. Researches about the end of life focused primarily on the people with cancer diagnosis. Relatively little is known about the attitudes of person with dementia and their family. The purpose of first year study was to develop theoretical framework to explain the family caregiver’s end of life decision making for institutional residents with advanced dementia. The purpose of second year study was (1) to test theoretical framework that developed from first year study; (2) to explore the knowledge and attitude of longterm institutional health care professionals regarding end of life care about advanced dementia. The purpose of third year study was (1) to explore the attitude regarding telling truth and end of life care decision among person with early dementia and their family; (2) to explore the factors related to consistency between person with early dementia and their family about telling truth and end of life care decision. The first year, grounded theory will be conducted to develop the conceptual framework. The initial theoretical sampling will include the family caregiver who has advanced dementia relatives in the longterm care facility. Estimating 1520 caregivers 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, the quantitative study and structural questionnaires will be used. Estimating those 100 dyads of residents with advanced dementia/ their family caregivers, 150 nursing home nursing staff, 40 social workers, and 40 physicians were recruited. SPSS and SASS software will be used to data analysis; main inferential statistic method includes multiple regression and multilevel modeling. Third year, both qualitative and quantitative method are used. Two to three focus group will be conducted collect the data, each group involves 58 persons with early stage dementia or their families. Structural questionnaire will the main data collection measures at the quantitative study. Estimating sample is 100 dyads person with early dementia/ family caregiver. SPSS 15.0 software will be used to data analysis; main inferential statistic method includes multiple regression and intraclass correlations coefficients. The study results will to extend the knowledge body of end of life care for dementia, and also will to be an evidence base for guiding clinical intervention and health policy decision making.

Project ID:PC9909-0192
External Project ID:NSC99-2314-B182-044