'There's something they can do': Educating aged care staff about the trajectory of dementia, palliative care and the Namaste Care™ program: A mixed methods study.

OBJECTIVE: To evaluate outcomes of education about the dementia illness trajectory and Namaste Care™ program on aged care staff's knowledge, attitudes, self-perceived skills and competence. METHODS: A convergent mixed methods research design was adopted to compare the results of quantitative and qualitative data following an education intervention. Nurses and aged care staff (n = 35) undertook 2 × 2 h training sessions over 3 days. Data were collected pre- and post-intervention using three validated surveys. Qualitative data were collected through interviews and a focus group. Thematic analysis was used to generate themes. Quantitative and qualitative data were integrated and compared during interpretation and discussion of the findings. RESULTS: Significant improvements in knowledge, attitudes and skills survey scores from already published data were confirmed by the qualitative findings in this study. Three key themes were derived from the data, comprising dementia-related education and knowledge changes, recognising the benefits of the Namaste Care™ program, and the importance of changing practice. CONCLUSIONS: Dementia education using the Namaste Care™ program enabled staff to identify gaps in knowledge and skills within their own practice. Staff perceived that the Namaste Care™ program can be a driver for practice change including palliative care to improve quality of life for people living in the advanced stages of dementia.

Enhancing post-diagnostic care in Australian memory clinics: Health professionals' insights into current practices, barriers and facilitators, and desirable support.

INTRODUCTION: Providing integrated and evidence-based support to individuals and families following a diagnosis of dementia is essential in order to optimise their quality of life and assist them to live well. Memory clinics provide multidisciplinary services specialising in the assessment and post-diagnostic treatment of people with dementia. This study sought to identify current practices, barriers and facilitators to provision of postdiagnostic support and to obtain health professionals' opinion of ideal post-diagnostic support to be offered in Australian memory clinics. METHODOLOGY: This was a cross-sectional qualitative exploratory study. Data was collected from health professionals familiar with the process of diagnosis and post-diagnostic support through two expert panel meetings (n = 22). In addition, 5 focus groups (n = 22) were conducted including health professionals who are employed in Australian memory clinics. Data was collected between October 2020 and November 2021. Reflexive thematic analysis was undertaken. RESULTS: Seven themes and three subthemes were identified under the three topics: Current Practices, Barriers and Facilitators, and Desirable Support. Themes relating to Current Practices were: Tailored Communication and feedback about diagnosis; Prescription of medications and follow-up; and Referrals to health and community services. Themes relating to Barriers and Facilitators were: The structure of the current system; Lack of funding; Lack of resources; Call for government investment. Themes relating to Desirable support were: A key/single point of support; Cognitive interventions; and Counselling and education. CONCLUSION: Post-diagnostic support in Australian memory clinics focused primarily on ensuring people understood their diagnosis, information about postdiagnostic support was provided, and dementia medications were prescribed. There were notable differences in practices in metropolitan compared to regional areas. A key concern was the need for increased funding, particularly to support the establishment of a single point of contact to facilitate continuity of care.

Stimulating sense memories for people living with dementia using the Namaste Care programme: What works, how and why?

BACKGROUND: Sensory-based program for people with advanced dementia aim to address unmet needs and to improve behaviours, mood or cognition. Pleasurable, involuntary sense memories stimulated by sensory-based program are difficult to evaluate because it is not possible to ask what people with dementia remember about their past, or what sense memories are being evoked. Notwithstanding the challenges in identifying what sense memories people with dementia experience, nurses and caregivers should recognise the potential value of sense memories for pleasure and happiness and provide optimum conditions to stimulate the senses. AIMS AND OBJECTIVES: To examine the potential for involuntary sense memories to be activated by sensory stimulation, with a focus on the effects of the Namaste Care programme. DESIGN: This is a discursive paper applying a content analysis to the qualitative findings of studies reporting on the Namaste Care programme to critically evaluate the topic of involuntary sense memories for people living with advanced dementia. METHODS: A literature review and content analysis of qualitative findings on the Namaste Care programme was performed. Findings are reported in line with the COREQ checklist. RESULTS: Eleven studies met the inclusion criteria. Codes were grouped into four categories representing enhanced mood, pleasure, happiness and comfort capturing the effects of the sensory stimulation observed or perceived by nurses and family caregivers. Descriptions provide some evidence of sensory memories activated by stimulation of some senses but not all. CONCLUSION: Involuntary sense memories contribute to well-being of people living with advanced dementia. Caregivers, including nurses, need to be aware that involuntary sense memories that do not rely on cognitive processes can be triggered by sensory stimulation and have the potential to enhance mood and bestow pleasure, happiness and comfort over and above the "activity" of the sensory programme. RELEVANCE TO CLINICAL PRACTICE: By integrating the documented experiential findings and conceptual understandings of sense memory, this paper contributes to advancing the understanding of the value of involuntary sense memories for people living with dementia that nurses and caregivers need to be aware of and, in turn, provide the optimum conditions for memory of the senses to be activated. A sensory-based programme, such as Namaste Care, provides optimum conditions at low cost to activate sense memories.

Predicting Development of Amyotrophic Lateral Sclerosis in Frontotemporal Dementia.

BACKGROUND: A proportion of patients with frontotemporal dementia (FTD) also develop amyotrophic lateral sclerosis (ALS). OBJECTIVE: We aimed to establish the risk of developing ALS in patients presenting with FTD and to identify the relevant clinical variables associated with progression from FTD to FTD-ALS. METHODS: Of 218 consecutive patients with FTD, 10.1% had a dual FTD-ALS diagnosis at presentation. The remaining 152 FTD patients with follow-up of at least 12 months were included in the present study. We calculated the rate of progression to FTD-ALS and compared the baseline characteristics of FTD patients who developed ALS to those who did not develop ALS. RESULTS: Five percent of FTD patients developed ALS. The incidence rate of ALS was 6.7/100 patient-years in patients with FTD symptoms since 1 year, which declined with duration of FTD symptoms. No FTD patients developed ALS after 5 years. Five out of 8 FTD patients who developed ALS had presented with a mixed behavioral variant FTD and progressive non-fluent aphasia (bvFTD+PNFA) phenotype, 2 with bvFTD, and 1 with PNFA. Progression to FTD-ALS was significantly more frequent in patients with bvFTD+PNFA compared to those without this phenotype (p < 0.0001, OR 38.3, 95% CI: 7.3 to 199.2), and in FTD patients who carried the C9orf72 repeat expansion compared to those without the repeat expansion (p = 0.02, OR 8.0, 95% CI: 1.7 to 38.6). CONCLUSIONS: FTD patients with a mixed bvFTD+PNFA phenotype and with a C9orf72 repeat expansion should be closely monitored for the possible development of ALS. The risk of developing ALS in FTD appears to decline with the duration of FTD symptoms.