Responsible management of motor vehicle drivers with dementia
- Authors: Yates, Mark , Ibrahim, Joseph
- Date: 2014
- Type: Text , Journal article
- Relation: Journal of the Royal College of Physicians of Edinburgh Vol. 44, no. 1 (2014), p. 4-7
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- Description: When Bridget Driscoll, a 44-year-old mother of two died after being struck by a motor vehicle, considered to be the first motor vehicle fatality in UK and possibly the world, the coroner stated 'I trust this sort of nonsense will never happen again'.1 Sadly, the coroner, medical practitioners and general public would be deeply and repeatedly disappointed. It was 1896. Motor vehicles were a curiosity. Drivers did not undergo any form of testing, be it medical fitness, driving ability or otherwise, and there were no licensing regulatory agencies. By 2010, road injury was the ninth most common cause of death globally (1.3 million deaths per annum) and dementia the fourth most common in high income countries.2 By 2030 the number of all licensed UK drivers who are 65 years or older will increase by almost 50% to almost one in every four drivers.3 If the juxtaposition of driving with dementia in an ageing population is not already a contentious social, political and medical issue, it certainly will become so.
Towards good dementia care : Awareness and uptake of an online Dementia Pathways tool for rural and regional primary health practitioners
- Authors: Ollerenshaw, Alison , Shee, Anna Wong , Yates, Mark
- Date: 2018
- Type: Text , Journal article
- Relation: Australian Journal of Rural Health Vol. 26, no. 2 (2017), p. 112-118
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- Description: OBJECTIVE: To explore the awareness and usage of an online Dementia Pathways tool (DPT; including decision tree and region-specific dementia services) for primary health practitioners (general practitioners (GPs) and nurses) in regional Victoria. DESIGN: Quantitative pilot study using surveys and Google Analytics. SETTING: A large regional area (48 000 square kilometres, population 220 000) in Victoria. PARTICIPANTS: Two hundred and sixty-three GPs and 160 practice nurses were invited to participate, with 42 respondents (GPs, n = 21; practice nurses, n = 21). MAIN OUTCOME MEASURES: Primary care practitioners' awareness and usage of the DPT website usage. RESULTS: Survey respondents that had used the tool (n = 14) reported accessing information about diagnosis, management and referral. Practitioners reported improvements in knowledge, skills and confidence about core dementia topics. There were 9683 page views between August 2013 and February 2015 (monthly average: 509 page views). The average time spent on page was 2.03 min, with many visitors (68%) spending more than 4 min at the site. This research demonstrates that the tool has been well received by practitioners and has been consistently used since its launch. Health practitioners' valued the content and the availability of local resources. CONCLUSION: Primary health practitioners reported that the DPT provided access to region-specific referral and management resources for all stages of dementia. Such tools have broad transferability in other health areas with further research needed to determine their contribution to learning in the practice setting and over time.
The effects of declining functional abilities in dementia patients and increases in psychological distress on caregiver burden over a one-year period
- Authors: Razani, Jill , Corona, Roberto , Quilici, Jill , Matevosyan, Adelina , Funes, Cynthia , Larco, Andrea , Miloyan, Beyon , Avila, Justina , Chang, Julia , Goldberg, Hope , Lu, Po
- Date: 2014
- Type: Text , Journal article
- Relation: Clinical Gerontologist Vol. 37, no. 3 (2014), p. 235-252
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- Description: The degree to which changes in caregiver burden over a one-year period can be predicted by functioning of dementia patients and caregiver psychological stress was examined. The Direct Assessment of Functional Status (DAFS) was administered to 44 patients and the Caregiver Burden Inventory and the Brief Symptom Inventory were administered to their next-of-kin caregivers. All patients and caregivers were assessed at baseline and again in approximately one year with the same measures. Hierarchical regression revealed that baseline patient functioning predicted overall changes in caregiver burden, but that increases in psychological symptoms of caregivers such as depression, anxiety, and hostility were the best predictors for specific types of increased caregiver burden, such as social, developmental, or physical burden. These results suggest that interventions should target reduction of particular psychological symptoms in order to reduce caregiver burden over time.
Non-communicable diseases and cognitive impairment : pathways and shared behavioral risk factors among older Chinese
- Authors: Yiengprugsawan, Vasoontara , Browning, Colette
- Date: 2019
- Type: Text , Journal article , Review
- Relation: Frontiers in Public Health Vol. 7, no. (Oct 2019), p. 7
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- Description: Population aging has brought about a number of challenges to public health and primary health care systems due to increases in the prevalence of non-communicable diseases (NCDs). As a country with one of the largest populations globally, China is confronting a rising number of chronic NCDs including cardiometabolic related conditions. This mini-review investigates the link between NCDs and cognitive impairment through common risk factors. Identifying risk factors is important for the prevention and management of these chronic conditions. In addition, this review also identifies the role of primary health care services in reducing behavioral risk factors for NCDs and cognitive impairment. Addressing shared determinants and pathways is important in the design of public health interventions and primary health care services in China. Monitoring and management of NCD biomarkers and behavioral risk factors may also be beneficial for cognitive health among older Chinese.
A descriptive study of health, lifestyle and sociodemographic characteristics and their relationship to known dementia risk factors in rural Victorian communities
- Authors: Ervin, Kaye , Pallant, Julie , Terry, Daniel , Bourke, Lisa , Pierce, David , Glenister, Kristen
- Date: 2015
- Type: Text , Journal article
- Relation: Aims Medical Science Vol. 2, no. 3 (2015), p. 246-260
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- Description: It is essential to determine the key health risk factors among populations to specifically plan future services and explore interventions that modify risk factors for communities. This aims to reduce risks and delay the onset of chronic conditions, which frequently results in dementia, particularly for small rural communities which experience health workforce shortages, a higher proportion of those in the chronic conditions age group, and reduced access to care. The aim of the study was to determine existing rates of chronic disease, and current lifestyle and sociodemographic factors which may predispose the population to higher risk of dementia. Residents from three shires in rural Victoria, Australia were recruited by random and non-random sampling techniques to complete a survey regarding health perceptions, pre-existing illnesses, health behaviors and social activity in their community. A total of 1474 people completed the survey. Positive factors reported were social participation and low rates of smoking. Negative factors included low rates of physical activity, high rates of obesity and high rates of chronic conditions that indicate significant risk factors for dementia in these communities. Although some factors are modifiable, these communities also have a large population of older residents. This study suggests that community interventions could modify lifestyle risk factors in these rural communities. These lifestyle factors, age of residents and the current chronic conditions are also important for rural service planning to increase preventive actions, and warn of the likely increase in the number of people developing chronic conditions with predispositon to dementia.
An evaluation of dog-assisted therapy for residents of aged care facilities with dementia
- Authors: Travers, Catherine , Perkins, Jacqueline , Rand, Jacqui , Bartlett, Helen , Morton, John
- Date: 2013
- Type: Text , Journal article
- Relation: Anthrozoös Vol. 26, no. 2 (2013), p. 213-225
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- Description: ABSTRACT Although some research suggests that dog-assisted therapy may be beneficial for people with dementia living in residential aged care facilities, the intervention has not been adequately investigated. To address this shortcoming, we conducted a randomized controlled trial of dog-assisted therapy versus a human-therapist-only intervention for this population. Fifty-five residents with mild to moderate dementia living in three Australian residential aged care facilities completed an 11-week trial of the interventions. Allocation to the intervention was random and participants completed validated measures of mood, psychosocial functioning, and quality of life (QOL), both prior to and following the intervention. No adverse events were associated with the dog-assisted intervention, and following it participants who had worse baseline depression scores demonstrated significantly improved depression scores relative to participants in the human-therapist-only intervention. Participants in the dog-assisted intervention also showed significant improvements on a measure of QOL in one facility compared with those in the human-therapist-only group (although worse in another facility that had been affected by an outbreak of gastroenteritis). This study provides some evidence that dog-assisted therapy may be beneficial for some residents of aged care facilities with dementia.
A labour of love : reward and satisfaction for nurses : findings from a grounded theory study in dementia care
- Authors: Gilbert, Julia , Ward, Louise , Walter, Ruby
- Date: 2021
- Type: Text , Journal article
- Relation: Dementia Vol. 20, no. 5 (2021), p. 1697-1710
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- Description: Aim: To understand nurses’ perceptions of quality nursing care in the dementia-specific care unit. As the world’s population ages, the incidence of dementia is projected to rise in tandem. The requirement for skilled, dementia-trained registered nurses who can provide quality nursing care will need to increase accordingly to meet the needs of these individuals. Extensive research has been completed on dementia nursing care in a variety of settings; however, little research has been undertaken into nurses’ perceptions of quality nursing care in the dementia-specific care unit. Understanding how registered nurses perceive quality nursing care in the dementia-specific care unit is important and provides valuable information about nursing practice in this environment for nurses and decision-makers. Gaining a better understanding of quality nursing care in this care unit may result in better nurse education and an improved patient experience. It may also assist nursing organisations, residential aged-care facilities, government bodies and nongovernment agencies that support, manage, and oversee dementia-specific care units. Method: A grounded theory study was conducted to understand nurses’ perceptions of quality nursing care in dementia-specific care units. The study involved interviewing nine registered nurses working in two dementia-specific care units on the Gold Coast, Queensland. Data were collected during semi-structured interviews and analysed using both constant comparison and thematic analysis. Findings: Three themes emerged from this study—Caring at the Coalface, Labour of love and the Business of Dementia Healthcare. The largest theme, Labour of love, represents the personal reward and feeling of satisfaction six nurses said they experienced when interacting with individuals living in the dementia-specific care unit. They identified and repeatedly discussed the joy and fulfilment they experienced when caring for them, and considered this to be an essential element of quality nursing care. It was evident from the data that the nurses cared very deeply about these individuals, and despite increased risks to personal safety at work, they did not want to work anywhere else. This article reports on the largest and key theme identified in the study Labour of Love. © The Author(s) 2020.
Quality nursing care in dementia specific care units : a scoping review
- Authors: Gilbert, Julia , Ward, Louise , Gwinner, Karleen
- Date: 2019
- Type: Text , Journal article
- Relation: Dementia Vol. 18, no. 6 (2019), p. 2140-2157
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- Description: Background: The concept of quality nursing care in a dementia specific unit is perceived as being subject to the interpretation of individuals, nurses and healthcare organisations. As the number of dementia diagnoses increases, understanding what constitutes quality nursing care within dementia specific care units is vital to inform policy makers and healthcare organisations globally. Efforts to identify quality nursing care and improve dementia care within dementia specific care units, may significantly reduce the financial and emotional burden of care-giving and improve the quality of life for individuals living with dementia. This scoping review aimed to examine current literature to gain an understanding of what constitutes quality nursing care in a dementia specific care unit. Design and methods: Five electronic databases (CINAHL, MEDLINE, ProQuest, Social Sciences Citation Index and Ovid) were used to search for articles published in English between 2011 and 2016 focusing on a definition of quality nursing care within dementia specific care units. Findings: Twenty journal articles were identified. From these articles, two content themes were identified: Challenges in the provision of quality nursing care in dementia specific care units, and Standardised approach to quality nursing care in a dementia specific care unit. The articles contained the following research designs, controlled pre-test and post-test design (n = 1), focus group interviews (n = 1), cross sectional survey (n = 6), semi structured interviews (n = 3), narrative review (n = 1), survey (n = 2), literature review (n = 3), systematic review (n = 1), and prospective longitudinal cohort study (n = 2). Conclusions: The concept of quality nursing care in a dementia specific unit remains subject to the interpretation of individuals, nurses and healthcare organisations, with current literature unable to provide a clear definition. Further research into what constitutes quality nursing care in dementia specific care units is recommended. © The Author(s) 2017.
Beyond crisis : enacted sense-making among ethnic minority carers of people with dementia in Australia
- Authors: Brijnath, Bianca , Gilbert, Andrew , Kent, Mike , Ellis, Katie , Browning, Colette
- Date: 2021
- Type: Text , Journal article
- Relation: Dementia Vol. 20, no. 6 (2021), p. 1910-1924
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- Description: The ‘family crisis’ narrative is frequently used in dementia studies to explain ethnic minority families’ pathways to health and aged care and why there is delayed dementia diagnoses in ethnic minority communities. Such narratives may obscure the family carers’ agency in negotiating services and managing personal, social and structural burdens in the lead up to diagnosis. To illuminate agency, this article describes ethnic minority families’ pathways to a dementia diagnosis using the concept of sense-making. Three case studies were drawn from 56 video interviews with family carers of older adults with dementia from Chinese, Arab and Indian backgrounds. Interviews were conducted across Australia from February to August 2018, then translated, transcribed and thematically analysed. Findings suggest families did not enter into formal care because of a crisis, instead navigating fragmented systems and conflicting advice to obtain a dementia diagnosis and access to relevant care. This experience was driven by sense-making (a search for plausible explanations) that involved family carers interpreting discrepant cues in changes to the behaviour of the person with dementia over time, managing conflicting (medical) advice about these discrepancies and reinterpreting their relationships with hindsight. The sense-making concept offers a more constructive hermeneutic than the ‘family crisis’ narrative as it illuminates the agency of carers’ in understanding changed behaviours, negotiating services and managing personal, social and structural barriers pre-diagnosis. The concept also demonstrates the need for a multimodal approach to promoting timely diagnosis of dementia in ethnic minority communities through dementia awareness and literacy campaigns as well as initiatives that address structural inequities. © The Author(s) 2020. **Please note that there are multiple authors for this article therefore only the name of the first 5 including Federation University Australia affiliate “Colette Browning” is provided in this record**
Semi-invasive system for detecting and monitoring dementia patients
- Authors: Yamsanwar, Yash , Patankar, Amol , Kulkarni, Siddhivinayak , Stratton, David , Stranieri, Andrew
- Date: 2019
- Type: Text , Conference proceedings , Conference paper
- Relation: 5th IEEE International Conference for Convergence in Technolog, I2CT 2019
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- Description: Dementia is one of the most prevalent conditions faced by the elderly caused by specific brain cell damage. Various effects of dementia include a loss of memory, reduction in problem solving ability, analytical skills, and decision making capability. Few systems have been developed for the early detection of dementia. Existing systems depend largely on hardware e.g. sensors, gateways. Factors like maintainability and sustainability compromise the efficiency of such systems. This paper presents a novel approach towards the early detection of dementia and aims at eliminating some of the challenges posed by these systems. It also provides a comparati ve study of the cognitive abilities of healthy old-age people and those afflicted by dementia. © 2019 IEEE.
- Description: E1
Supporting regional aged care nursing staff to manage residents’ behavioural and psychological symptoms of dementia, in real time, using the nurses’ behavioural assistant (NBA) : A pilot site 'end-user attitudes’ trial
- Authors: Klein, Britt , Clinnick, Lisa , Chesler, Jessica , Stranieri, Andrew , Bignold, Adam , Dazeley, Richard , McLaren, Suzanne , Lauder, Sue , Balasubramanian, Venki
- Date: 2018
- Type: Text , Conference paper
- Relation: 2017 Global Telehealth Meeting, GT 201; Adelaide, Australia; 22nd-24th November 2017; published in Telehealth for our Ageing Society (part of the Studies in Health Technology and Informatics series) Vol. 246, p. 24-28
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- Description: Background: This regional pilot site ‘end-user attitudes’ study explored nurses’ experiences and impressions of using the Nurses’ Behavioural Assistant (NBA) (a knowledge-based, interactive ehealth system) to assist them to better respond to behavioural and psychological symptoms of dementia (BPSD) and will be reported here. Methods: Focus groups were conducted, followed by a four-week pilot site ‘end-user attitudes’ trial of the NBA at a regional aged care residential facility (ACRF). Brief interviews were conducted with consenting nursing staff. Results: Focus group feedback (N = 10) required only minor cosmetic changes to the NBA prototype. Post pilot site end-user interview data (N = 10) indicated that the regional ACRF nurses were positive and enthusiastic about the NBA, however several issues were also identified. Conclusions: Overall the results supported the utility of the NBA to promote a person centred care approach to managing BPSD. Slight modifications may be required to maximise its uptake across all ACRF nursing staff.
Use of medical services by older Australian women with dementia : a longitudinal cohort study
- Authors: Byles, Julie , Cavenagh, Dominica , Bryant, Jamie , Mazza, Danielle , Browning, Colette , O'Loughlin,Sally
- Date: 2021
- Type: Text , Journal article
- Relation: Australian and New Zealand Journal of Public Health Vol. 45, no. 5 (2021), p. 497-503
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- Description: Objective: To assess the use of Medicare-subsidised health services by women with and without dementia. Methods: Data from women of the 1921–26 birth cohort of the Australian Longitudinal Study on Women's Health were linked to various administrative datasets to ascertain dementia diagnosis. The use of subsidised general practitioner (GP) services (75+ health assessments [HAs], chronic disease management meetings [CDMs], multidisciplinary case conferences [MCCs]) and specialist and allied health services between 2000 and 2013 for these women was analysed using longitudinal GEE models. Results: A total of 9,683 women were included with 1,444 (15%) women identified as having dementia. Compared to women with no dementia indication, women with dementia had more yearly non-emergency GP attendances (short [<30 minutes] IRR=1.11 [1.07, 1.13]; long [>30 minutes] IRR=1.11 [1.04, 1.19]) and fewer specialist attendances (IRR=0.91 [0.85, 0.97]) and were more likely to have an emergency GP attendance (OR=2.29 [2.05, 2.57]). There were no significant differences in the odds of having either a HA or CDM or using allied health services for women with and without dementia indicators. Conclusions: The overall use of services designed to improve the prevention and coordination of the care of older people with chronic conditions was low. Women with dementia were no more likely to access these services. Implications for public health: There is underuse of some primary and allied healthcare services designed for people with complex chronic conditions. These could be better used by women with dementia to improve the management of complex comorbidities (e.g. CDMs), to prevent the onset of disability (e.g. physiotherapy), and enhance needs assessment and service access (e.g. HAs). © 2021 The Authors. **Please note that there are multiple authors for this article therefore only the name of the first 5 including Federation University Australia affiliate “Colette Browning” is provided in this record**
Non-invasive smartphone use monitoring to assess cognitive impairment
- Authors: Thang, Nguyen , Oatley, Giles , Stranieri, Andrew , Walker, Darren
- Date: 2021
- Type: Text , Conference paper
- Relation: 13th International Conference on Computer and Automation Engineering, ICCAE 2021 p. 64-67
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- Description: Background: There are many tests for the early detection of Mild Cognitive Impairment (MCI) to prevent or delay the development of dementia, particularly amongst the elderly. However, many tests are complex and are required to be performed repeatedly. Cognitive assessment apps for a smartphone have emerged, but like other tests, they require the user to perform complex tasks like drawing time on a clock. Few studies have explored non-invasive ways of tracking and assessing MCI without having the user perform specific tests. Objective: This research ultimately aims to develop an app that runs in the background and collects smartphone usage data that correlates well with MCI test results. The focus of this preliminary study was to develop an app that collects usage data and common MCI questionnaires to see if usage data between people varied, and to establish associations between phone usage and cognitive tests results. Method: An android application was developed to gather data over three weeks by three volunteers (authors). Usage data collected included: SMS and call log, accelerometer, location, app usage, self-report. Cognitive tests implemented were Stroop, Go/No Go tests and absent-mindedness questionnaires. Due to the small sample size and Covid-19 restrictions (October 2020), location data was not reliable. SMS text was not collected for privacy reasons. Results: App categories can differentiate people, but the app usage cannot be used to distinguish people. © 2021 IEEE.
Investigating what works to support family carers of people with dementia: a rapid realist review
- Authors: Parkinson, Mark , Carr, Susan , Rushmer, Rosemary , Abley, Clare
- Date: 2017
- Type: Text , Journal article
- Relation: Journal of Public Health Vol. 39, no. 4 (2017), p. e290-e301
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- Description: Advances in longevity and medicine mean that many more people in the UK survive life-threatening diseases but are instead susceptible to life-limiting diseases such as dementia. Within the next 10 years those affected by dementia in the UK is set to rise to over 1 million, making reliance on family care of people with dementia (PWD) essential. A central challenge is how to improve family carer support to offset the demands made by dementia care which can jeopardise carers' own health. This review investigates 'what works to support family carers of PWD'. Rapid realist review of a comprehensive range of databases. Five key themes emerged: (1) extending social assets, (2) strengthening key psychological resources, (3) maintaining physical health status, (4) safeguarding quality of life and (5) ensuring timely availability of key external resources. It is hypothesized that these five factors combine and interact to provide critical biopsychosocial and service support that bolsters carer 'resilience' and supports the maintenance and sustenance of family care of PWD. 'Resilience-building' is central to 'what works to support family carers of PWD'. The resulting model and Programme Theories respond to the burgeoning need for a coherent approach to carer support.
Boundary crossers : how providers facilitate ethnic minority families' access to dementia services
- Authors: Brijnath, Bianca , Gilbert, Andrew , Antoniades, Josefine , Croy, Samantha , Kent, Mike , Ellis, Katie , Browning, Colette , Goeman, Dianne , Adams, Jon
- Date: 2022
- Type: Text , Journal article
- Relation: Journals of Gerontology - Series B Psychological Sciences and Social Sciences Vol. 77, no. 2 (2022), p. 396-406
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- Description: Objectives: Providers who work closely with ethnic minority people with dementia and their families are pivotal in helping them access services. However, few studies have examined how these providers actually do this work. Using the concept of "boundary crossers,"this article investigates the strategies applied by these providers to facilitate access to dementia services for ethnic minority people with dementia and their families. Methods: Between 2017 and 2020, in-depth video-recorded interviews were conducted with 27 health, aged care, and community service providers working with ethnic minority people living with dementia across Australia. Interviews were conducted in one of seven languages and/or in English, then translated and transcribed verbatim into English. The data were analyzed thematically. Results: Family and community stigma associated with dementia and extra-familial care were significant barriers to families engaging with services. To overcome these barriers, participants worked at the boundaries of culture and dementia, community and systems, strategically using English and other vernaculars, clinical and cultural terminology, building trust and rapport, and assisting with service navigation to improve access. Concurrently, they were cognizant of familial boundaries and were careful to provide services that were culturally appropriate without supplanting the families' role. Discussion: In negotiating cultural, social, and professional boundaries, providers undertake multidimensional and complex work that involves education, advocacy, negotiation, navigation, creativity, and emotional engagement. This work is largely undervalued but offers a model of care that facilitates social and community development as well as service integration across health, aged care, and social services. © 2021 The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved.
Tai Chi exercise to improve balance and prevent falls among older people with dementia
- Authors: Barrado-Martín, Yolanda , Polman, Remco , Nyman, Samuel
- Date: 2022
- Type: Text , Book chapter
- Relation: Exercise to Prevent and Manage Chronic Disease Across the Lifespan Chapter 27 p. 363-372
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- Description: The number of people affected by dementia across the world is estimated to grow over the coming decades. It is a condition that leads to global and nonreversible cognitive impairment. As well as creating dependency in everyday activities, dementia increases the risk of older people experiencing a fall. Falls are globally recognized as a public health problem, given their high prevalence and severe consequences among older people. Several interventions have been developed to prevent falls, with robust evidence to support exercise-based interventions and in particular Tai Chi. Tai Chi exercise is a mind-body exercise that has evidence to support its potential to improve physical, cognitive, and mental health more generally as well as prevent falls. Most exercise trials to date have excluded people with dementia, and so there is little evidence to guide the use of Tai Chi for this patient group. Further, the methodological quality and heterogeneity of approaches used in Tai Chi studies such as the exercise dose, outcomes measured, and how adherence was reported, makes it difficult to make firm conclusions. Emergent evidence suggests Tai Chi is an enjoyable and safe form of exercise for community-dwelling older people with mild to moderate dementia and their informal carers. It has strong potential to improve quality of life and prevent falls among this patient group. The mechanism for its effectiveness is not clear but it is potentially via a positive impact on both cognitive and physical functioning. Clinical practice recommendations for exercise prescribers are provided with an emphasis on how to attract and sustain high levels of adherence. © 2022 Elsevier Inc. All rights reserved.
Reliability of the ICECAP-O quality of life scale with community-dwelling people with dementia
- Authors: Bibi, Iram , Polman, Remco , Nyman, Samuel
- Date: 2022
- Type: Text , Journal article
- Relation: Gerontology and Geriatric Medicine Vol. 8, no. (2022), p.
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- Description: Currently, measures of quality of life used with older people with dementia (PWD) are mainly health related. Health is not an actual attribute of but a means to attain quality of life. The Investigating Choice Experiments for the Preferences of Older People - CAPability index (ICECAP-O) measures attributes of quality of life. While its construct validity has been tested with PWD, no study has yet published data on the reliability of this scale used directly with PWD. In this study, we tested the external (test-retest) reliability of the ICECAP-O with 54 community-dwelling older PWD from the south of England. The ICECAP-O had acceptable test-retest reliability (r =.68, p <.01 and r =.56, p <.01 for raw and tariff scores, respectively). This suggests that the ICECAP-O is both a reliable and valid measure of quality of life for use directly with community-dwelling PWD. © The Author(s) 2022.
Organisational engagement of individuals with younger-onset dementia : maximising beneficial workplace outcomes
- Authors: Carino, James
- Date: 2023
- Type: Text , Thesis , PhD
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- Description: This thesis concerns individuals who develop dementia symptoms before 65 years of age (called younger-onset dementia, or YOD) while employed, which has significant personal, financial and social effects due to the commitments and responsibilities of families and work. This thesis aims to identify employment-related work strategies to allow people with dementia to continue to work. Four linked studies consistent with the study aim were designed and implemented. In Chapter 3, Study 1, a review of employer approaches to employees with dementia, evaluated nine studies related to dementia and work. The main analysis extracted, grouped and classified employer actions towards employees with dementia in these studies. Two in three employer responses to employees with dementia were ineffective in supporting employees. Poor understanding of the difficulties of those living with dementia appeared to be the main cause. Better knowledge among individuals experiencing dementia symptoms and their employers is needed. In Chapter 4, Study 2, a review of guidance materials related to dementia in the workplace sought to identify and review the availability, structure and content of information to support employees or employers dealing with dementia. Guidance information published by dementia organisations in English-speaking countries such as Australia, Canada, New Zealand, Singapore, the United Kingdom (England, Scotland and Ireland) and the United States of America was analysed and compiled. Dementia websites were found to offer relevant, high-quality content, but this can be fragmented and difficult to find. Few organisations covered the range of relevant content. Most information was aimed at employees with dementia symptoms rather than their employers. Information gaps for employees with dementia included the importance of early diagnosis and assistive technology applications. Employer information gaps included workplace identification of dementia, employee retention and managing the wider work team around the person with dementia. Chapter 5 addressed Study 3, employer approaches to employees with dementia at work. This chapter extended existing research exploring the experience of dementia at work. Four groups were engaged in semi-structured interviews: (1) employers and human resource (HR) managers; (2) professionals supporting employers such as HR consultants; (3) employees with dementia who were working or had left work within the past two years; and (4) professionals supporting people living with dementia. The study identified employee and employer actions and assessed how dementia could be managed using relevant information and approaches to maintain viable employment. As well as the need for greater awareness of workplace cognitive impairment, this study identified solutions to prolong employment. Suggestions included using relevant expertise and external peer support, implementing self-management and personal strategies, raising employer awareness of employee rights and employer responsibilities, employee engagement in decisions about them and their work and assistance with the transition from work. An analytical approach, considering the person, task and organisation may assist in devising more effective employer implementation approaches. Study 4, guidance model document feedback (presented in Chapter 6), evaluated two model guidance documents (one for employers, the other for employees) developed from Studies 1, 2 and 3. This study aimed to determine the relevance and completeness of the content and identify potential enhancements. Study 3 participants were recontacted for this study. The proposed documents were received positively. Suggested improvements included care in the use of terms such as ‘dementia’, moving beyond ‘dementia friendly’ to inclusivity and clearer specification of the responsibilities of HR practitioners and employers. Chapter 7 placed the findings across the four studies into the context of increased workplace and societal attention to mental health, wellbeing, cognitive fitness and neurodiversity. Growing awareness of these issues is argued to be positive for future workplace understanding, acceptance and management of conditions such as dementia and cognitive impairment. HR leadership and expertise in dealing with dementia in the workplace are pertinent to achieving this goal. This thesis elaborates on the practical importance of information and communication in understanding cognitive impairment at work. Awareness that individuals in the early stages of cognitive difficulties maintain the capacity to continue to work can be improved. A review of information designed to support workplace decision-making has identified content and pathways to improve workplace knowledge and awareness. In conclusion, dementia at work can be managed by integrating awareness of dementia with mental health and cognition in workplaces. Greater attention to the diversity of cognitive abilities and processes in organisations can improve the life experience of employees living with dementia, their contribution to work, overall work performance and satisfaction.
- Description: Doctor of Philosophy
The experience of structural burden for culturally and linguistically diverse family carers of people living with dementia in Australia
- Authors: Gilbert, Andrew , Antoniades, Josefine , Croy, Samantha , Thodis, Antonia , Adams, Jon , Goeman, Dianne , Browning, Colette , Kent, Mike , Ellis, Katie , Brijnath, Bianca
- Date: 2022
- Type: Text , Journal article
- Relation: Health and Social Care in the community Vol. 30, no. 6 (2022), p. e4492-e4503
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- Description: Evidence suggests that family carers of culturally and linguistically diverse (CALD) people living with dementia experience higher stress and unmet need than the general Australian population. These disparities are often framed as the result of CALD communities failing to seek formal support. Challenging this, we draw on the concept of ‘structural burden’ to explore how the complexity of health and aged systems contribute to the burden that CALD carers experience. We conducted semi‐structured interviews with 104 family carers for CALD people with dementia in Australia, followed by thematic analysis of transcripts. Additional to structural burdens encountered by the general older population, CALD carers faced challenges understanding Australia's Anglo‐centric aged care system, locating culturally appropriate care and were required to translate the languages and operations of health and aged care systems into terms their family members understood. This burden was mitigated by the presence of ethno‐specific organisations and other navigation support. Australia's aged care system has moved towards centralised governance and consumer‐directed care provision. This system involves a confusing array of different programmes and levels, bureaucratic applications and long waiting times. Carers' encounters with these systems demonstrates how some CALD people are being left behind by the current aged care system. While ethno‐specific services can reduce this burden, not all CALD groups are represented. Consequently, improving access to dementia care among CALD populations requires entry point and navigation support that is culturally appropriate and linguistically accessible.
Online pathways for dementia care
- Authors: Ollerenshaw, Alison
- Date: 2015
- Type: Text , Journal article
- Relation: Australian Family Physician Vol. 44, no. 7 (2015), p. 510-513
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- Description: Background: Dementia is one of the fastest growing diseases in Australia. General practitioners (GPs) are at the forefront of dementia diagnosis and management. However, the disease is complex and this can prevent timely diagnosis. A recent initiative in the Grampians region, Victoria, is addressing some of these challenges through a comprehensive, intuitive, online tool. Objective: The aim of this article is to describe the process of developing and reasons for implementing the Dementia Pathways Tool, in the Grampians region, Victoria. Discussion: Designed in collaboration with GPs and practice nurses, the Dementia Pathways Tool promotes awareness of the first signs of dementia. It offers an informed approach to diagnosis, referral and ongoing management of people with the symptoms of dementia. This Tool provides practitioners - irrespective of their practice location - with access to an intuitive, online web-based repository of information. The Tool is publicly available and therefore accessible to all practitioners and the general public. Initial indications from statistics of the website are positive, but an evaluation will help inform the potential for broader applications of this Tool in the future. © The Royal Australian College of General practitioners 2015.