Quality of care of older people living with advanced dementia in the community in Israel. Sternberg, Shelley; Bentur, Netta; Shuldiner, Jennifer. Journal of the American Geriatrics Society62.2 (Feb 2014): 269-275.

Objectives: To examine the quality of end‐of‐life (EOL) care of older people with advanced dementia (OPAD) living in the community. Design: Retrospective cohort study. Setting: The second largest preferred provider organization in Israel. Participants: Primary family caregivers of OPAD (N = 117; 52 bereaved caregivers, 65 still caring for OPAD). Measurements: Primary outcome measures were quality‐of‐EOL‐care scales regarding symptom management at the EOL with dementia (SM‐EOLD) and comfort assessment in dying at the EOL with dementia (CAD‐EOLD). Results: Caregivers reported a mean symptom management score of 29 ± 9.8 points (range 0–45 points), indicating poor symptom management in the areas of pain, shortness of breath, fear, skin breakdown, and resistiveness to care. In a multiple regression model, less comorbidity, longer duration of dementia, greater caregiver education, and absence of caregiver depression predicted better SM‐EOLD. The 52 bereaved caregivers reported a mean CAD‐EOLD score of 31.3 ± 6.7 points (range 14–42 points), indicating poor comfort around dying, especially difficulty swallowing and discomfort. Conclusion: Because of the high rates of suffering, there is a need to address the complexity and severity of symptoms and problems faced by OPAD in the community and their caregivers. The priorities should include education of healthcare providers on palliative care, focusing especially on symptom‐management needs of OPAD and comfort around dying. (PsycINFO Database Record (c) 2014 APA, all rights reserved)(journal abstract)

These papers may also interest you:

Early identification of palliative care needs by family physicians: A qualitative study of barriers and facilitators from the perspective of family physicians, community nurses, and patients. Beernaert, Kim; Deliens, Luc; De Vleminck, Aline; Devroey, Dirk; Pardon, Koen; et al. Palliative Medicine28.6 (Jun 2014): 480-490.

Background: There is a growing recognition that a palliative care approach should be initiated early and not just in the terminal phase for patients with life-limiting diseases. Family physicians then play a central role in identifying and managing palliative care needs, but appear to not identify them accurately or in a timely manner. Aim: To explore the barriers to and facilitators of the early identification by family physicians of the palliative care needs. Design, setting, and participants: Six focus groups (four with family physicians, n = 20, and two with community nurses, n = 12) and 18 interviews with patients with cancer, chronic obstructive pulmonary disease, heart failure, and dementia were held. Thematic analysis was used to derive themes that covered barriers and facilitators. Results: Key barriers and facilitators found relate to communication styles, the perceived role of a family physician, and continuity of care. Family physicians do not systematically assess non-acute care needs, and patients do not mention them or try to mask them from the family physician. This is embedded within a predominant perception among patients, nurses, and family physicians of the family physician as the person to appeal to in acute and standard follow-up situations rather than for palliative care needs. Family physicians also seemed to pay more often attention to palliative care needs of patients in a terminal phase. Conclusion: The current practice of palliative care in Belgium is far from the presently considered ideal palliative care approaches. Facilitators such as proactive communication and communication tools could contribute to the development of guidelines for family physicians and policymakers in primary care. (PsycINFO Database Record (c) 2014 APA, all rights reserved)(journal abstract)

Getting to Know Me’: The development and evaluation of a training programme for enhancing skills in the care of people with dementia in general hospital settings. Elvish, Ruth; Burrow, Simon; Cawley, Rosanne; Harney, Kathryn; Graham, Pat; et al. Aging & Mental Health18.4 (May 2014): 481-488.

Objective: The aims of the study were to report on the development and evaluation of a staff training intervention in dementia care designed for use in the general hospital setting: the ‘Getting to Know Me’ training programme. The study also aimed to undertake initial psychometric analysis on two new outcome scales designed to measure knowledge and confidence in dementia care. Methods: The study comprised two phases. The first phase comprised the design of two questionnaires which are shared within this paper: Confidence in Dementia (CODE) Scale and Knowledge in Dementia (KIDE) Scale. In phase two, staff undertook the ‘Getting to Know Me’ training programme (n = 71). The impact of the programme was evaluated using a pre–post design which explored: (1) changes in confidence in dementia; (2) changes in knowledge in dementia; and (3) changes in beliefs about challenging behaviour. Results: The psychometric properties of the CODE and KIDE scales are reported. Statistically significant change was identified pre–post training on all outcome measures. Clinically meaningful change was demonstrated on the CODE scale. Conclusions: The ‘Getting to Know Me’ programme was well received and had a significant impact on staff knowledge and confidence. Our findings add to a growing evidence base which will be strengthened by further robust studies, the exploration of the impact of staff training on direct patient outcomes, and further identification of ways in which to transfer principles of care from specialist dementia environments into general hospital settings.

Alberta Health Services Appendix 2: Pain Screening and Assessment Tool for Supportive Living Residents/Clients is a short, easy to use tool- Section 1 is a verbal check list, Section 2 Is a check list of non-verbal cues that the person may have pain at rest &/or with movement. It was developed from Grey Bruce Palliative Care/Hospice Association Manual. Section 2 is a valuable tool in that it gives cues that there may be pain, especially in people with advanced dementia.