The emotional well-being of young people having a parent with younger onset dementia

Younger onset dementia (YOD) not only affects the person with the diagnosis but the whole family, which often includes young people. A limited body of research on this group of young people indicates that they experience varying degrees of emotional trauma. We explored the lived experiences of young people having a parent with YOD from the perspective of the social model of disability. Data were available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 8 and 24 years. Thematic analysis identified four main themes: the emotional toll of caring, keeping the family together, grief and loss and psychological distress. The social model of disability theory provides a helpful framework for these families who experience significant emotional distress, demonstrating that the disability is often socially constructed by a society, which marginalizes and excludes them. A ‘whole family’ approach is proposed, where the needs of young people and their parents are respected and responded to age appropriately.Doris Whiting Trust Fun

Invisible Carers

This article highlights some of the lived experiences of this group of young carers often hidden from health and service care providers.Doris Whiting Trust Fun

Invisible Carers

This article highlights some of the lived experiences of this group of young carers often hidden from health and service care providers.Doris Whiting Trust Fun

CHERISH (collaboration for hospitalised elders reducing the impact of stays in hospital): protocol for a multi-site improvement program to reduce geriatric syndromes in older inpatients

Abstract Background Older inpatients are at risk of hospital-associated geriatric syndromes including delirium, functional decline, incontinence, falls and pressure injuries. These contribute to longer hospital stays, loss of independence, and death. Effective interventions to reduce geriatric syndromes remain poorly implemented due to their complexity, and require an organised approach to change care practices and systems. Eat Walk Engage is a complex multi-component intervention with structured implementation, which has shown reduced geriatric syndromes and length of stay in pilot studies at one hospital. This study will test effectiveness of implementing Eat Walk Engage using a multi-site cluster randomised trial to inform transferability of this intervention. Methods A hybrid study design will evaluate the effectiveness and implementation strategy of Eat Walk Engage in a real-world setting. A multisite cluster randomised study will be conducted in 8 medical and surgical wards in 4 hospitals, with one ward in each site randomised to implement Eat Walk Engage (intervention) and one to continue usual care (control). Intervention wards will be supported to develop and implement locally tailored strategies to enhance early mobility, nutrition, and meaningful activities. Resources will include a trained, mentored facilitator, audit support, a trained healthcare assistant, and support by an expert facilitator team using the i-PARIHS implementation framework. Patient outcomes and process measures before and after intervention will be compared between intervention and control wards. Primary outcomes are any hospital-associated geriatric syndrome (delirium, functional decline, falls, pressure injuries, new incontinence) and length of stay. Secondary outcomes include discharge destination; 30-day mortality, function and quality of life; 6\ua0month readmissions; and cost-effectiveness. Process measures including patient interviews, activity mapping and mealtime audits will inform interventions in each site and measure improvement progress. Factors influencing the trajectory of implementation success will be monitored on implementation ..

Effect of a Ward-Based Program on Hospital-Associated Complications and Length of Stay for Older Inpatients: The Cluster Randomized CHERISH Trial

Importance: Hospital-associated complications of older people (HAC-OPs) include delirium, hospital-associated disability, incontinence, pressure injuries, and falls. These complications may be preventable by age-friendly principles of care, including early mobility, good nutrition and hydration, and meaningful cognitive engagement; however, implementation is challenging. Objectives: To implement and evaluate a ward-based improvement program ("Eat Walk Engage") to more consistently deliver age-friendly principles of care to older individuals in acute inpatient wards. Design, Setting, and Participants: This cluster randomized CHERISH (Collaboration for Hospitalised Elders Reducing the Impact of Stays in Hospital) trial enrolled 539 consecutive inpatients aged 65 years or older, admitted for 3 days or more to study wards, from October 2, 2016, to April 3, 2017, with a 6-month follow-up. The study wards comprised 8 acute medical and surgical wards in 4 Australian public hospitals. Randomization was stratified by hospital, providing 4 clusters in intervention and in control groups. Statistical analysis was performed from August 28, 2018, to October 17, 2021, on an intention-to-treat basis. Intervention: A trained facilitator supported a multidisciplinary work group on each intervention ward to improve the care practices, environment, and culture to support key age-friendly principles. Main Outcomes and Measures: Primary outcomes were incidence of any HAC-OP and length of stay. Secondary outcomes were incidence of individual HAC-OPs, facility discharge, 6-month mortality, and all-cause readmission. Outcomes were analyzed at the individual level, adjusted for confounders and clustering. Results: A total of 265 participants on 4 intervention wards (124 women [46.8%]; mean [SD] age, 75.9 [7.3] years) and 274 participants on 4 control wards (145 women [52.9%]; mean [SD] age, 78.0 [8.2] years) were enrolled. The composite primary outcome of any HAC-OP occurred for 115 of 248 intervention participants (46.4%) and 129 of 249 control participants (51.8%) (intervention group: adjusted odds ratio, 1.07; 95% CI, 0.71-1.61). The median length of stay was 6 days (IQR, 4-9 days) for the intervention group and 7 days (IQR, 5-10 days) for the control group (adjusted hazard ratio, 0.96; 95% credible interval, 0.80-1.15). The incidence of delirium was significantly lower for intervention participants (adjusted odds ratio, 0.53; 95% CI, 0.31-0.90). There were no significant differences in other individual HAC-OPs, facility discharge, mortality, or readmissions. Conclusions and Relevance: The Eat Walk Engage program did not reduce the composite primary outcome of any HAC-OP or length of stay, but there was a significant reduction in the incidence of delirium. Trial Registration: anzctr.org.au Identifier: ACTRN12615000879561.</p

Evidence-based occupational therapy for people with dementia and their families: What clinical practice guidelines tell us and implications for practice

Background/aim:The first evidence-based Clinical Practice Guidelines and Principles of Care for People with Dementia in Australia have been released. The Guidelines detail a number of important evidence-based recommendations for occupational therapists. The aim of this paper is (1) to provide an overview of Guideline development, and (2) to describe the evidence supporting a recommendation for occupational therapy. Common characteristics of effective occupational therapy programmes for people with dementia are described. Methods: Guideline development involved adaptation of existing high-quality guidelines developed overseas and 17 systematic reviews to ensure that the most recent high-quality evidence was included. One of the systematic reviews involved examining the evidence for interventions to promote independence in people with dementia. Specifically, we looked at the evidence for occupational therapy and its effect on activities of daily living, quality of life and carer impact. Results: A total of 109 recommendations are included in the Guidelines. Occupational therapy was found to significantly increase independence in activities of daily living and improve quality of life. Effective occupational therapy programmes involve: environmental assessment, problem solving strategies, carer education and interactive carer skills training. Conclusion: Occupational therapists working with people with dementia in community settings should ensure that their time is spent on those aspects of intervention that are shown to be effective. KEY WORDS:Alzheimer disease, Evidence-based practice, knowledge translation, practice guidelin

Can a tailored exercise and home hazard reduction program reduce the rate of falls in community dwelling older people with cognitive impairment: protocol paper for the i-FOCIS randomised controlled trial

The rate of falls in community dwelling older people with cognitive impairment (CI) is twice that of a cognitively intact population, with almost two thirds of people with CI falling annually. Studies indicate that exercise involving balance and/or a home hazard reduction program are effective in preventing falls in cognitively intact older people. However the potential benefit of these interventions in reducing falls in people with CI has not been established. This randomised controlled trial will determine whether a tailored exercise and home hazard reduction program can reduce the rate of falls in community dwelling older people with CI. We will determine whether the intervention has beneficial effects on a range of physical and psychological outcome measures as well as quality of life of participants and their carers. A health economic analysis examining the cost and potential benefits of the program will also be undertaken