Utilizing Palliative Leaders In Facilities to Transform Care for Alzheimer's Disease

Nursing home staff and family members reported symptom frequency and intensity for 18 symptoms in the past 30 days. Symptom assessment was derived from the End-of-Life in Dementia Comfort Assessment in Dying (EOLD-CAD) and End-of-Life in Dementia Symptom Management (EOLD-SM) instruments. These symptoms included pain, discomfort, shortness of breath, choking, gurgling, difficulty swallowing, skin breakdown, restlessness, agitation, anxiety, depression, fear, crying, moaning, resistiveness to care, calm, serenity, peace. If the symptom did occur, respondents were asked if it had occurred once a month, 2-3 days a month, once a week, several days a week, or every day (ranging 0-5) and asked if the symptom was not at all intense, somewhat intense or very intense (ranging 1-3). Frequency and intensity were multiplied together for a score of 0-15 per symptom. A total score was derived by calculating the sum score and dividing by number of items. Higher scores indicate greater symptom burden.

The outcome measure is change in the EOLD-SWC scale score. Participating family members/surrogate decisionmakers provided answers to questions asked over a 30 day timeframe. There are 10 items, each measured on a 4-point Likert scale ranging from 1 to 4 as follows: strongly disagree, disagree, agree, strongly agree. The items are added together for a cumulative score for a range of 10-40, with higher scores indicating greater satisfaction with care. The questionnaire items address decision-making, communication with health care professionals, understanding the resident's condition, and the resident's medical and nursing care.

The outcome measure is change in the quality-of-life (QOL) measure scale score. Two quality-of-life questions were asked of nursing home staff and family/surrogate decisionmakers about the respective resident's quality of life. One quality-of-life measure is a seven point scale describing overall quality of life. Another is a five point scale describing quality of life. Lower scores indicate poorer quality of life.

Change in staff palliative care knowledge will be measured by the Palliative Care survey (PCS). The PCS is a validated instrument, which includes subscales evaluating the frequency of key PC practice behaviors: family communication, provider coordination, planning/intervention, and bereavement. The total instrument score and each of the subscales are averaged to produce a range from 1 to 4, with higher scores indicating superior PC practices.

The quality of dying-long-term care (QOD-LTC) scale was developed for cognitively impaired and intact residents. It was developed to be reported post-death for residents in NHs and residential care/assisted living settings. It assesses perspectives on quality of personhood, closure, and preparatory tasks. Higher mean scores reflect a higher quality of end-of-life in LTC. This was collected from nursing home staff and family/surrogate decisionmakers.

The Family Distress in Advanced Dementia Scale was developed for use with family members of nursing home residents with advanced dementia. Eighteen items from the scale were asked, consisting of three domains of distress: emotional distress, dementia preparedness, and nursing home relations . Higher scores indicate higher distress. Collected from family/surrogate decisionmakers only.