ORCID Profile
0000-0002-8631-3213
Current Organisations
University of Melbourne
,
Victorian Government Department of Health
Does something not look right? The information on this page has been harvested from data sources that may not be up to date. We continue to work with information providers to improve coverage and quality. To report an issue, use the Feedback Form.
Publisher: SAGE Publications
Date: 20-02-2019
Abstract: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers’ understanding of dementia and improved mental health and burden. MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with s les of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer’s understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief. Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers’ knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates. The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers’ knowledge and mental health.
Publisher: Elsevier BV
Date: 12-2011
Publisher: Wiley
Date: 07-02-2008
DOI: 10.1111/J.1532-5415.2007.01626.X
Abstract: To evaluate outcomes associated with falls clinic programs. Longitudinal. Thirteen outpatient falls clinics in Victoria, Australia. Four hundred fifty-four people referred for clinic assessment (mean age+/-standard deviation 77.9+/-8.8 73% female). After assessment, multifactorial interventions were organized to address identified risk factors. A Minimum Data Set was developed and used across all clinics to derive common data on falls, falls injuries, and secondary measures associated with falls risk, including balance, falls efficacy, gait, leg strength, function, and activity. All measures were repeated 6 months later. Clients had a high risk of falls, with 78% having had falls in the preceding 6 months (63% multiple fallers, 10% experiencing fractures from the falls). An average of 7.6+/-2.8 falls risk factors were identified per client. The clinic team organized an average of 5.7+/-2.3 new or additional interventions per client. Sixty-one percent of eligible clients returned for the 6-month assessment. At this time, there was more than a 50% reduction in falls, multiple falls, and fall injuries (P < or = .004) and small but significant improvements evident on secondary measures of balance, leg strength, gait speed, and confidence outcomes (P < .006). Average adherence to recommendations was 74.3%. Factors associated with higher adherence included being male, younger than 65, living with others, and having a caregiver (P < .05). This large multicenter study identified high falls risk of older people referred to falls clinics, the multifactorial nature of their presenting problems and provides preliminary evidence of positive outcomes after falls clinic management.
Publisher: CSIRO Publishing
Date: 2014
DOI: 10.1071/AH13184
Abstract: Objective To explore associations among quality indicators (QI e.g. pressure ulcers, falls and/or fractures, physical restraint, use of multiple medications, unplanned weight loss) of the Victorian Public Sector Residential Aged Care Services (VPSRACS) with other demographic and health-related factors. Methods Data for 380 residents over a 3-month period were extracted retrospectively from client databases at four VPSRAC facilities. Results Four significant logistic regression models were developed. The strongest models related to falls and polypharmacy. Significant associations for these models included the following: (1) residents with a higher body mass index were 6% less likely (95% confidence interval (CI) 1%–11%) to fall, whereas high levels of cognitive impairment increased the risk of falling by 8% (95% CI 2%–14%) (2) being ambulant with a gait aid more than doubled the risk of falling compared with non-ambulant residents (95% CI 19%–546%) and (3) higher cognitive impairment was associated with a 6% (95% CI 1%–11%) reduction in the likelihood of polypharmacy. Conclusions Identification of significant relationships between the VPSRACS QI and other demographic and health-related factors is a preliminary step towards a more in-depth understanding of the factors that influence the QI and predict adverse events. What is known about the topic? Currently, the VPSRACS report on five QI. Previous research has shown associations between several of these indicators, but not all. What does this paper add? This paper examines associations between the five VPSRAC QI as well as other key demographic and health-related factors. Novel findings from regression analyses included an increased risk of falls associated with recommended body mass index and using gait aids, but no association between pressure ulcers and the Norton score. Regression models for other QI were limited by the small occurrences of the QI. However, significant associations were identified indicating that residents using a gait aid had a lower level of unplanned weight loss and residents with polypharmacy had higher unplanned weight loss. What are the implications for practitioners? This paper reinforces the value of collecting VPSRAC QI data to enable facilities to consider how these variables could impact on care quality and to proactively plan to reduce the risk of adverse events. Although QI data can be used to benchmark with other settings, this paper shows how QI data can be used to inform practice within a facility and help identify patient-related factors that may warrant further investigation.
Publisher: Wiley
Date: 09-07-2008
DOI: 10.1111/J.1440-1584.2008.00982.X
Abstract: To test the feasibility (for a potential randomised controlled trial) of a computer intervention for improving social interaction and promoting the mental health of rural carers. The study combined pre- and post-intervention measures with interviews to determine the feasibility of the intervention and the acceptability of the study design to participants. The intervention consisted of providing 14 rural carers with computers and a 4-week training program on basic computer skills, using email and the Internet. The study was conducted in a rural community setting. The carers were 12 women and two men, aged from 50 to 81 years, with an average of 65.5 years. Measures of social isolation (UCLA Loneliness Scale), depression (Geriatric Depression Scale), carer burden (Zarit Burden Interview) and computer confidence were taken at baseline and at a 3-month follow-up. Interviews were completed at follow-up to discuss outcomes of the study. A focus group discussion was conducted with 11 participants to discuss the study and resolve computer issues. Most carers reported increased confidence in email and Internet use. There was improvement for most participants in depressive symptoms and social isolation, but little change in carer burden. Participants identified many social benefits associated with the computer intervention, such as intergenerational connection, community building, skills and confidence and preparation for the future. The intervention was found to be practical and acceptable for a group of older carers. It was concluded that it would be feasible to conduct a large randomised controlled trial of the intervention.
Publisher: Cambridge University Press (CUP)
Date: 04-04-2023
DOI: 10.1017/S1041610223000236
Abstract: Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. Pre–post interventional mixed methods study. Online videoconference group program for carers across the UK held in 2021. Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.
Publisher: Wiley
Date: 2005
Publisher: Elsevier BV
Date: 09-2015
DOI: 10.1016/J.MATURITAS.2015.06.034
Abstract: The adverse mental health effects of caring have been studied, frequently in carers of people with dementia. Less is known about the mental health of carers of people with other conditions. This study compared depression and burden in older carers looking after people with a variety of conditions. Over 200 older carers interested in participating in the Improving Mood through Physical Activity in Carers and Care-recipient Trial were included in this cross-sectional study, using the Geriatric Depression Scale (GDS) and Zarit Burden Inventory (ZBI). Overall there were 43% of carers who were depressed and a quarter of them reported moderate-to-severe burden. Carers of people with physical conditions had the highest levels of depression and burden. Patient diagnosis, hours spent caring, and burden were associated with depression, while hours spent caring and carer depression were associated with burden. These factors contributed approximately 25-30% of the variance of depression and burden, respectively. The diagnosis of the patient was a factor associated with depression, and older carers of people with physical conditions were at the highest risk. It is important for clinicians to assess the mental health of all carers, regardless of the patient diagnosis.
Publisher: CSIRO Publishing
Date: 2004
DOI: 10.1071/PY04002
Abstract: Home and Community Care (HACC) services are provided to frail older people, other people with disabilities, and their carers, to assist independent living. HACC policy acknowledges that certain groups within the population have greater difficulty accessing HACC services than others. This paper considers the equity of access issue for one of the groups that have difficulty - people from culturally and linguistically erse (CALD) backgrounds. Language spoken at home is used as an indicator of CALD status. The 2001 Census data and HACC-user data from the Western Metropolitan Region (WMR) of Victoria was analysed. The proportion of the HACC user population that speaks a language other than English (LOTE) was compared with the proportion of the general population that speaks a language other than English for two age groups ?the total population and those 65 years and over. Chi square analyses were conducted to determine odds ratios to give an indication of the magnitude and direction of the association between CALD status and access to HACC services. Analyses indicated that people who spoke a LOTE at home were approximately a third as likely to access Local Government HACC services than those who spoke English (OR=0.35). The findings suggest that policy and service development initiatives to improve access to HACC services for people of CALD backgrounds have not yet effectively reached their targets.
Publisher: JMIR Publications Inc.
Date: 20-07-2022
DOI: 10.2196/35376
Abstract: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography pre-post well-being ratings and surveys psycholinguistic analysis of conversation facial emotion recognition facilitator ratings and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. DERR1-10.2196/35376
Publisher: SAGE Publications
Date: 03-2016
Publisher: Oxford University Press (OUP)
Date: 30-06-2017
Publisher: Cambridge University Press (CUP)
Date: 21-02-2013
DOI: 10.1017/S1041610213000070
Abstract: Background: Behavioral and psychological symptoms of dementia (BPSD) have been associated with increased carer burden and early institutionalization. BPSD are more responsive to treatment than are cognitive and functional decline. Little is known about how family carers understand and try to reduce these symptoms. This study aimed to explore the strategies used by carers looking after someone with high levels of BPSD. Methods: Twenty-five carers were interviewed using a semi-structured interview with the Neuropsychiatric Inventory (NPI). They were all caring for someone eligible for an Extended Aged Care at Home Dementia Package, which targets people with BPSD. Results: Participants reported high levels of BPSD with a mean score of 8.2 for symptoms (range 2–12, SD = 2.38) and a mean NPI score of 51.4 (range 14–111, SD = 28.74). Distress scores were also high with a mean of 18.5 (range 2–42, SD = 11.33). Carers described on average, fewer than four strategies for managing BPSD. Encouraging activity, utilizing psychotropic medications, identifying triggers, restraining or treating in a paternalistic manner, and meeting physiological needs were the most commonly used strategies. Conclusion: While family carers are often at the forefront of identifying triggers and addressing unmet needs, findings from this study suggest that some carers have a limited repertoire of strategies despite experiencing a large number of symptoms. There is a clear need for ensuring evidence-based programs to educate and support carers in identifying triggers, understanding symptoms and learning to cope with these symptoms.
Publisher: Wiley
Date: 03-2023
DOI: 10.1002/GPS.5867
Abstract: Many family carers of a person with dementia experience pre‐death grief. We aimed to identify strategies that help carers manage pre‐death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity. Mixed methods observational study using structured and semi‐structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit‐Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief‐COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio‐recorded additional interviews with a sub‐s le of 16 participants. Correlations indicated that emotion‐oriented coping was associated with lower grief ( R = −0.341), and dysfunctional coping with higher grief ( R = 0.435), with a small association with problem‐focused strategies ( R = −0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief‐COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion‐focused strategies, but we did not identify a theme relating to problem‐focused strategies. Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre‐death grief, yet current services appear under‐resourced to meet growing demand. ( ClinicalTrials.gov ID: NCT03332979).
Publisher: Oxford University Press (OUP)
Date: 11-06-2021
Abstract: Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives. This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance. Qualitative study using semi-structured interviews. Community. We conducted semi-structured interviews with 19 people living with mild dementia. Interviews were transcribed verbatim and analysed thematically. Five themes were identified: (i) awareness of eating and drinking problems (ii) food and drink representing an in idual’s identity and agency (iii) delegating later decisions about eating and drinking to family carers (iv) acceptability of eating and drinking options and (v) eating and drinking towards the end of life. For people living with mild dementia, possible later eating and drinking problems could feel irrelevant and action may be postponed until they occur. Fears of being a burden to family and of being treated like a child may explain reluctance to discuss such future problems. People living with mild dementia might wish to preserve their agency and maintain good quality of life, rather than be kept alive at later stages by artificial nutrition and hydration. For people with mild dementia, eating and drinking problems may seem unrelated to them and so get left undiscussed. Negative connotations regarding eating and drinking problems may hinder the discussion. The optimal time to discuss possible future problems with eating and drinking with people with mild dementia may need an in idual approach.
Publisher: Springer Science and Business Media LLC
Date: 24-10-2019
DOI: 10.1186/S12904-019-0467-9
Abstract: Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice. Qualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers. The themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care. Family carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.
Publisher: Informa UK Limited
Date: 2007
DOI: 10.1080/09638280600902760
Abstract: This paper compares the service models of three different types of rehabilitation programmes provided in Victoria, Australia: One hospital-based and two types of rehabilitation in the home (RITH). Nine focus group interviews were conducted with multidisciplinary staff working in rehabilitation teams in one hospital-based and eight RITH programmes. Additional data were collected for 164 clients and 75 carers from eight of these programmes at admission, discharge and three months post discharge. Interviews were conducted with 32 clients and 14 carers. The criteria for admission and model of rehabilitation adopted in the three programmes were similar. There were differences in programme aims, characteristics of the clients admitted and the type and level of therapy clients received, both between hospital and home-based programmes and between the three programmes. In general, staff and clients saw the home as providing a relevant context that enabled in idualized, goal directed therapy for medically stable rehabilitation clients. The hospital offered an opportunity to socialize with others and specialized equipment. Results of this study suggest clients and carers require a mix of hospital and home-based rehabilitation that is able to respond to their needs and preferences at each phase of the rehabilitation continuum.
Publisher: Elsevier BV
Date: 05-2022
Publisher: Cambridge University Press (CUP)
Date: 03-2016
DOI: 10.1016/J.EURPSY.2016.01.566
Abstract: The hepatic safety of agomelatine was assessed in 49 phase II and III studies. The aim was to analyze the characteristics of patients who developed an increase in transaminases whilst taking agomelatine. A retrospective pooled analysis of changes in serum transaminase in 7605 patients treated with agomelatine (25 mg or 50 mg/day) from 49 completed studies was undertaken. A significant increase in serum transaminase was defined as 3-fold the upper limit of normal ( 3 ULN). Final causality was determined in a case-by-case review by five academic experts. Transaminase increased to 3 ULN in 1.3% and 2.5% of patients treated with 25 mg and 50 mg of agomelatine respectively, compared to 0.5% for placebo. The onset of increased transaminases occurred at 12 weeks in 64% of patients. The median time to recovery (to ≤ 2ULN) was 14 days following treatment withdrawal. Liver function tests recovered in 36.1% patients despite the continuation of agomelatine, suggesting the presence of a liver adaptive mechanism. Patients with elevated transaminases at baseline, secondary to obesity and fatty liver disease (NAFLD), had an equally increased risk of developing further elevations of transaminases with agomelatine and placebo. This reflects the widespread fluctuations of serum transaminases in patients with NAFLD. The overall incidence of abnormal transaminases was low and dose dependent. No specific population was identified regarding potential risk factors. Withdrawal of agomelatine led to rapid recovery, and some patients exhibited an adaptive phenomenon. The liver profile of agomelatine seems safe when serum transaminases are monitored. The authors have not supplied their declaration of competing interest.
Publisher: Wiley
Date: 27-03-2007
DOI: 10.1111/J.1445-5994.2007.01317.X
Abstract: This study summarizes the findings of a national survey of inpatient geriatric services in Australia conducted in 2001. These data are unique as there are no uniform administrative data systems available to provide this information. Eight hundred and eighty-eight hospitals were surveyed and full responses were received from 690, representing 78% of hospitals and 85% of all hospital beds. The results illustrated wide variation in the style and level of provision of services among hospitals and across regional and state jurisdictions.
Publisher: Springer Science and Business Media LLC
Date: 07-07-2016
Publisher: MDPI AG
Date: 25-03-2022
DOI: 10.20944/PREPRINTS202203.0334.V1
Abstract: Eating and drinking difficulties are common in dementia, but little is known about the experiences of ethnic minority groups managing these difficulties at home. We undertook qualitative semi-structured interviews, exploring the meaning of food, the impact of dementia on eating and drinking and carers& rsquo experiences of support. Interviews were audio-recorded and transcribed verbatim. We interviewed 17 carers and people with dementia from ethnic minority backgrounds, using reflexive thematic analysis to analyse data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged people with dementia to eat and drink, as did social interactions. However, these strategies sometimes led to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. Carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices.
Publisher: British Medical Journal Publishing Group
Date: 03-2021
Publisher: Hindawi Limited
Date: 06-05-2021
DOI: 10.1111/HSC.13404
Abstract: The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations.
Publisher: Wiley
Date: 29-11-2020
DOI: 10.1111/JAN.14654
Publisher: Cambridge University Press (CUP)
Date: 05-2020
Publisher: Wiley
Date: 26-10-2011
DOI: 10.1111/J.1365-2753.2011.01786.X
Abstract: Little scrutiny has been applied to how 'cost per fall' values have been calculated and applied. This paper presents discourse discussing how the cost of fall statistic could potentially be misleading when applied to inpatient health or residential care settings and provides estimates of the cost of falls and cost of falls per person. Burden of disease was estimated using a decision tree approach. Data informing the decision tree were drawn from a retrospective audit of 545 falls in a residential care facility, a visual observation study of 46 residents from the same facility and a cohort study of 186 residents from nine different facilities in Australia. Acute care and transportation costs were extracted from the retrospective audit using incident reports and care note review. The distribution of falls per person and associations between falls, fractures and change in resident mobility were extracted from the cohort study. The association between resident mobility and the amount of time required to perform toileting, transfer and dressing activities was extracted from the visual observational study. The minimum 'cost per fall' was estimated to be $AUD 841 and the maximum was $AUD 1024. The 'cost of falls per person' estimate was $AUD 1887 (2008 base year). This cost per fall estimate was substantially lower than three previous internationally derived estimates possibly as a consequence of how fall data were collected and modelled in these studies. Cost of falls per person may be a preferable statistic for future use.
Publisher: BMJ
Date: 12-04-2015
Publisher: Wiley
Date: 13-08-2021
Publisher: Cambridge University Press (CUP)
Date: 09-2018
DOI: 10.1017/S1041610218001321
Abstract: Our successes in improving life expectancy has led to increased years of life lived with multimorbidity and dementia with increased support needs. Much of the support given to frail older people is provided by family and informal support networks with significant impact on their physical, psychological, and financial well-being. Demographic and societal changes are reducing the capacity of family to offer this care. Formal home-based, center-based, and long-term/residential/nursing home care services are predominately provided by untrained care staff working under supervision from nursing staff. Difficulties recruiting and retaining these staff is leading to major challenges to meeting the needs of older people (Chenoweth et al. , 2010). This volume contains a number of studies focusing on ways to improve care provided by these services for frail older people. The approach underpinning these papers and many perspectives of good quality care for older people is the need to be person-centered where the older person identifies their own goals for care and assessment of need, employing a holistic and strength-based approach incorporating their interests, values, and capacities (Vernooij-Dassen and Moniz-Cook, 2016).
Publisher: CSIRO Publishing
Date: 2002
DOI: 10.1071/AH020169
Abstract: A qualitative study was conducted in Victoria to explore factors affecting the acceptability and use of assistive devices by older people. Four focus groups and fifteen home-based interviews were conducted with older people (mean age 77 years) who had been issued with 2 or more assistive devices. Analysis of the data indicated that almost all participants were content to be advised by professionals on suitable equipment. Most considered the equipment and home modifications safe and easy to use, and appreciated the benefits for mobility, confidence and independence. Reasons for non-use were commonly related to changes in functional ability. Cost was a major deterrent for a small number who opted to 'make do'. Recommendations are made for improvements to the existing system of equipment provision and use, including: review and development of consistency of provision and payment policy among service providers flexibility of payment options adequate education and follow-up support for clients.
Publisher: CSIRO Publishing
Date: 2003
DOI: 10.1071/PY03010
Abstract: This paper reports on the development of a Priority of Access tool for Home and Community Care services provided by local governments in the Western Metropolitan Region of Victoria. Managing the demand for these services requires an equitable approach to service allocation decisions. The Priority of Access tool was developed with input from Western Metropolitan Region local government HACC representatives and the Department of Human Services. A literature review identified indicators of need that predicted use of community services however, no substantial contributions were identified relating to prioritising access to health services in the home. The tool developed relies on cross-referencing responses from the Service Coordination tools developed through the Victorian Primary Care Partnership initiative. A pilot was conducted with assessment staff and their feedback led to modification of the tool. Staff found the tool a useful method of increasing objectivity in assessments and providing a framework to consistently determine priority. The importance of training in the use of the tool was reinforced during piloting of the tool. The Priority of Access tool provides a simple and consistent, yet comprehensive, approach for Western Metropolitan Region local government HACC services to equitably determine priority of access for clients.
Publisher: SAGE Publications
Date: 18-09-2017
Abstract: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. 9-month prospective cohort study. Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale). Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had ‘do not resuscitate’ statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.
Publisher: Association for Research in Vision and Ophthalmology (ARVO)
Date: 09-2009
DOI: 10.1167/IOVS.08-3294
Abstract: To determine the relationship between the severity of distance and near-vision impairment on vision-specific quality of life (QoL) and depression in residential care residents. Residents from three low-level residential care facilities in Victoria (Australia) were recruited. All participants were assessed for cognitive impairment, distance and near-vision impairment (VI), and depression. Sociodemographic and other clinical data were also collected. The subscales of the Nursing Home Vision-Targeted Health-Related Quality-of-Life questionnaire (NHVQoL) were the main outcome measures and were validated by Rasch Analysis. Seventy-six residents were enrolled. The mean +/- SD of the participants' age was 83.9 +/- 9.9 years, and most were women (n = 44 60%) 46.4% (n = 35) had binocular presenting VI ( 0.05). In linear regression models, distance and near VI was independently associated with poorer QoL on seven of the eight subscales of the NHVQoL scale (P < 0.05). The beta coefficients ranged from -12.3 to -80.2, which suggests that, on average, people with vision loss had poorer QoL, ranging between 12 and 80 points (scale range: 0-100) than did those with no VI. The QoL aspects most affected by vision loss were related to general vision, reading, hobbies, emotional well-being, and social interaction. VI remains a major form of disability in in iduals living in residential care facilities and affects vision-specific functioning and socioemotional aspects of daily living. A larger study is needed to confirm these findings.
Publisher: British Medical Journal Publishing Group
Date: 03-2021
Publisher: Wiley
Date: 10-01-2011
DOI: 10.1111/J.1741-6612.2010.00497.X
Abstract: To validate the de Morton Mobility Index (DEMMI) in community-dwelling older adults who require informal care. Thirty-five consecutively recruited older adults (>65 years) living in the community who required informal care were included from Melbourne and regional Victoria, Australia. Participants were assessed using a battery of questionnaires, the Falls Risk for Older People (Community version), modified Barthel Index, Geriatric Depression Scale, the Medical Outcomes Survey Short Form 36, the Assessment of Quality of Life and the DEMMI. The DEMMI consists of 15 mobility items that are administered by therapist observation of physical performance. Each participant was assessed in their home. The DEMMI is without floor or ceiling effects for community-dwelling older adults who require informal care, and evidence of convergent, discriminant and known groups validity was obtained for the DEMMI. DEMMI data fitted the Rasch model and the minimal clinically important difference was 11 points. The DEMMI has suitable clinimetric properties for application in community-dwelling older adults who require informal care.
Publisher: Cambridge University Press (CUP)
Date: 02-05-2023
Publisher: Elsevier BV
Date: 2012
DOI: 10.1016/J.GERINURSE.2011.11.002
Abstract: For residents in long-term care facilities, falling is a major concern requiring preventive intervention. A prospective cohort study measured the impact of falls reduction following the implementation of evidence-based fall prevention interventions in 9 Australian residential care facilities. An external project team provided a comprehensive audit of current practice. Facilitated by an action research approach, interventions were in idualized to be facility- and patient-specific and included the following: environmental modifications such as low beds and height-adjustable chairs, movement alarms, hazard removal, and hip protectors. Participants included 670 residents and 650 staff from 9 facilities across 3 states. A significant reduction of falls were observed per site in the proportion of fallers (P = .044) and single fallers (P = .04). However, overall the number of falls was confounded by multiple falls in residents. Reduction in fallers was sustained in the 6-month follow-up phase. Positive outcomes from interventions varied between facilities. Further research is necessary to target frequent fallers.
Publisher: Informa UK Limited
Date: 08-10-2010
DOI: 10.3109/09638280903295482
Abstract: To describe and evaluate the effectiveness of an innovative model of rehabilitation designed to meet the needs of a sparsely populated rural area in South Eastern Australia. Five rural health services collaborated to establish a rehabilitation programme. Evaluation included comparing length of stay (LOS) and improvement in the Modified Barthel Index (BI) with the Victorian State average for Level 2 (non-specialist) rehabilitation. Surveys were conducted with staff, clients and carers in the programme. An inpatient rehabilitation programme was successfully established through cooperation between five health services. Clients admitted to the programme improved functionally at least as well as the Victorian State average for similar client groups (BI change 26.5 compared with 22.3 points, p < 0.001), with a shorter LOS (13.8 compared with 22.3 days) but more were discharged to residential aged care (16.1% compared with 6%). The programme was successful in meeting its stated aims. The model described could be adopted in rural areas sharing similar characteristics. Key enablers to the success of the programme included: collaboration between hospitals a skilled and enthusiastic leader recruitment of allied health staff consistent medical leadership access to training and support from a major regional rehabilitation centre and access to funding to enable the programme to establish itself and demonstrate outcomes for clients.
Publisher: SAGE Publications
Date: 17-06-2021
DOI: 10.1177/02692163211025457
Abstract: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Systematic review and narrative synthesis. Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.
Publisher: BMJ
Date: 17-06-2014
Publisher: Wiley
Date: 18-06-2022
DOI: 10.1111/HEX.13552
Abstract: COVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing in idual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed. To coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond. Semi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers a group of clinical and academic experts and a group of policy and charity leads. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking. Combining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations. We worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.
Publisher: Cambridge University Press (CUP)
Date: 15-09-2020
DOI: 10.1017/S1041610220001647
Abstract: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted. Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups. Three NHs in South East England with dementia units, erse in terms of size, ownership status, and location. Residents with a dementia diagnosis or scoring ≥2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses). Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework. Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention. The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended ≥3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful. The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.
Publisher: Wiley
Date: 19-07-2021
DOI: 10.1111/HEX.13307
Abstract: Family carers of people living with dementia often need support with making decisions about care. Many find end‐of‐life care decisions particularly difficult. The aim of this article is to present an evidence‐ and theoretical‐based process for developing a decision aid to support family carers of people with dementia towards the end‐of‐life. Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision‐Making model. The decision aid covers four decision areas: (1) changes in care (2) eating and drinking difficulties (3) everyday well‐being and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. This is the first decision aid that focusses on multiple decisions towards the end‐of‐life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.
Publisher: Oxford University Press (OUP)
Date: 26-01-2006
DOI: 10.1111/J.1365-2133.2005.07082.X
Abstract: The psychological impact of childhood atopic eczema on parents and carers is poorly quantified. Objectives To compare the impact of caring for a child with atopic eczema vs. asthma on parents' sleep and well-being. Ninety-two parents of 55 children who had moderate to severe atopic eczema or asthma took part in this prospective, questionnaire-based study. It was conducted at regional eczema and asthma outpatient clinics within a U.K. tertiary paediatric hospital. The main outcome measures were the number and duration of parents' sleep disturbances, as well as their anxiety and depression scores. Mothers caring for children with atopic eczema lost a median of 39 min of sleep per night and fathers lost 45 min sleep per night. This compared with a median of 0 min sleep lost by parents who had children with asthma (P < 0.001). These differences were independent of the age of the children, and whether the child came from a single-parent or two-parent family. There was a direct correlation between the severity of sleep disturbance and the level of maternal anxiety (rho = 0.58 P = 0.002) and depression (rho = 0.73 P < 0.001), as well as the level of paternal anxiety (rho = 0.59 P = 0.01). Compared with looking after a child with chronic asthma, caring for a child with chronic atopic eczema was associated with greater parental sleep disturbances. Disruption to parental sleep correlated with anxiety levels and, in the case of mothers, depression scores.
Publisher: Wiley
Date: 05-06-2012
DOI: 10.1111/J.1365-2702.2012.04121.X
Abstract: To examine residential aged care facility staff views on using falls risk assessment tools and the implications for developing falls prevention practices in the context of an action research project. Falls risk assessments play an important role in care planning by identifying and monitoring aged care facility residents most at risk of falls. Yet while such assessments are recommended in falls prevention best practice guidelines, there is little published research that examines staff procedures and views related to conducting falls risk assessments. Falls risk assessments were undertaken in the context of an action research project. Twelve staff members from two residential aged care facilities (RACFs) in Tasmania formed a single Falls Action Research Group, which met 22 times over a year, providing the study's qualitative data. During this time, key group members assessed 178 residents using a new falls risk assessment tool (FROP-Resi). According to group members, facilities evolved from a 'tick-and-flick' approach to falls risk assessment to a more in idualised, face-to-face assessment process. Group members perceived the process to be more meaningful and enjoyable for staff involved in the assessment process resulting in higher quality of assessments and leading to improved levels of falls awareness among staff, residents and family caregivers. An action research process is useful for facilitating a new approach to falls risk assessments, engaging aged care facility staff with falls prevention and prompting improvements in falls prevention practices. RACFs need to provide opportunities for staff to meet regularly to discuss practice, identify issues and take action. By doing so, staff can engage meaningfully with best practice activities such as optimising falls risk assessment processes.
Publisher: Oxford University Press (OUP)
Date: 18-12-2020
Abstract: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care (PoC) and place of death (PoD) in older adults involves significant new challenges. To explore key factors that influence PoC and PoD decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19. Rapid review of reviews, undertaken using WHO guidance for rapid reviews for the production of actionable evidence. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. 10 papers were included for full data extraction. These papers were published between 2005 and 2020. Papers included discussed actual PoD, as well as preferred. Results were ided into papers that explored the process of decision-making, and those that explored decision-making outcomes. The process and outcomes of decision-making for older people are affected by many factors—all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients.
Publisher: Wiley
Date: 19-01-2020
DOI: 10.1002/GPS.5256
Abstract: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life. We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random s le of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings. While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end-of-life care planning and discussions. Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom.
Publisher: SAGE Publications
Date: 31-08-2021
DOI: 10.1177/14713012211041259
Abstract: Many carers of in iduals with dementia experience high levels of grief before and after the death of the person with dementia. This study aimed to determine the usefulness, acceptability, and relevance of an animation developed to raise awareness to grief experienced by carers of people with dementia. This research had a cross-sectional survey design. We contacted carers of people with dementia over the phone or email. Participants evaluated the animation through an online or paper-based survey. We used descriptive statistics and analysed qualitative data using thematic analysis. We required a s le of 40 carers to adequately power the study with a target of 75% of carers finding the animation useful, acceptable, and relevant. 31/78 carers approached evaluated the animation. Ninety-four percent of participants found the animation relevant to their situation, meeting our target. However, we fell short of this target for usefulness (68%) and acceptability (73%). The qualitative responses suggested that participants felt the animation could help improve the understanding of grief among carers, family, friends, and healthcare professionals. Carers also shared that the animation would be most useful for carers of newly diagnosed people with dementia. Most carers of people with dementia in this study reported that the animation was useful, acceptable, and relevant. Dissemination of the resource may be useful for the majority of carers, with the caveat that a few carers may find it distressing and need to be referred for further support.
Publisher: Oxford University Press (OUP)
Date: 09-2023
Publisher: SAGE Publications
Date: 09-09-2015
Abstract: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. A total of 29 statements were agreed and mapped to in idual, group, organisational and economic olitical levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.
Publisher: Elsevier BV
Date: 06-2013
Publisher: Wiley
Date: 15-05-2013
DOI: 10.1111/AJAG.12040
Abstract: The objective of this study was to report older Australians' views about what they want from aged care reforms expressed in submissions to the Productivity Commission's 'Inquiry into Caring for Older Australians' and the 'Conversations on Ageing' (Conversations). Consumer responses to the 'Inquiry into Caring for Older Australians' (n = 59) and findings from the Conversations (n = 31) conducted by the Honourable MarkButler with the Council on the Ageing were summarised. Older people wanted to be included as full citizens in community life with their contributions acknowledged, including as carers. They wanted high quality, accessible and respectful services that supported their independence and over which they had control. They wanted fair and transparent funding arrangements and care that caters for ersity in Australia's older people. They wanted reform to be soon and to have bipartisan support. This paper provides consumer perspectives to inform aged care policy, practice and research in Australia.
Publisher: CSIRO Publishing
Date: 2013
DOI: 10.1071/AH12168
Abstract: Objective. This study sought to explore the impact of care recipient falls on caregivers. Methods. Ninety-six community-dwelling caregiver−care recipient dyads participated in a 12-month prospective study. Falls and other accidents and service use were recorded. Dyads were assessed at baseline and after each fall. Assessment included the Zarit Burden Interview and a post-accident survey developed for the present study. Focus groups were then conducted to further explore the impact of falls on caregivers. Results. Fifty-four care recipients (56%) experienced falls within the 12 months of the study. There was a significant increase in caregiver burden after the first fall (Zarit Burden Interview score increased from 24.2 ± 14.2 to 27.6 ± 14.5, P 0.01). Twenty-four percent of caregivers reported that they had altered their usual routine after the fall, mainly not wanting to leave the care recipient alone. However, there was no increase in the number of services used. Focus group discussions highlighted the need for constant vigilance of the care recipient, a lack of knowledge about support services and concerns related to utilising respite care. Conclusion. Falls among care recipients have a significant impact on carers, including an increased fear of falling, prompting the need for even closer vigilance. What is known about the topic? Falls are a significant problem for older people as one in three older people fall each year and injurious falls are the leading cause of injury-related hospitalisation in older people. In Australia falls cost the economy over $500 million per year. What does this paper add? This paper adds a unique perspective to the falls literature, that of the older person’s carer. Falls are a significant problem for community-dwelling carers of older people, contributing to carer burden and impeding the carer’s ability to undertake activities of daily living because of the perceived need for constant vigilance to prevent the person they care for from falling. What are the implications for practitioners? Practitioners should ensure that carers are aware of evidence-based falls-prevention practices and services, such as group and in idual exercise programs, home modifications and podiatry, that might assist to prevent falls in the person they care for and therefore reduce the burden of care.
Publisher: SAGE Publications
Date: 02-03-2022
DOI: 10.1177/14713012221074219
Abstract: Dementia is a life limiting disease following a progressive trajectory. As carers often become key decision makers, their knowledge of dementia will have health implications for the person living with dementia as well as carer’s psychological wellbeing. To explore how sociodemographic factors, health literacy and dementia experience influence family carers knowledge about dementia. In this cross-sectional, mixed methods study, we interviewed 150 family carers and assessed their dementia knowledge using the Dementia Knowledge Assessment Scale (DKAS). Linear regression analyses were used to examine whether health literacy, previous experiences of dementia, support group attendance and sociodemographic characteristics predicted knowledge. Sixteen carers also completed qualitative interviews which explored unmet information needs. Transcripts and field notes were thematically analysed. Most participants were partners (47%) or adult children (48%) and cared for someone with severe (32%) or moderate (43%) dementia. Mean DKAS scores were 34.8/50 (SD = 7.0, range = 17–48) reflecting 8/25 incorrect answers. Backwards elimination regression found greater dementia knowledge was associated with greater health literacy for appraising information (coef 3.48, 95% CI (1.38, 5.58) p = 0.001) and more years of education (coef 0.39, 95% CI (0.12, 0.65) p = 0.004). Although not significant, knowledge was slightly lower in those who attended a support group, and a trend was found between ability to understand health information and knowledge. Only 39% accurately identified dementia as life shortening, indicating notable gaps in knowledge. Four qualitative themes were identified arm yourself with information, ability to steer through information, other experience of dementia can be helpful and the importance of relationships with health care professionals. In an information age, vast amounts of information are available, but this can bring difficulties. Carers with more years of education and higher health literacy knew more about dementia. Professionals should consider how carers with lower health literacy can be supported through provision of timely, relevant information.
Publisher: Cambridge University Press (CUP)
Date: 03-04-2020
DOI: 10.1017/S1041610220000289
Abstract: Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers. Cross-sectional. Caregivers of people with dementia living at home or in a care home. In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%). Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales (“personal sacrifice burden” “heartfelt sadness” “worry and felt isolation”). Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant higher dementia knowledge was associated with lower “heartfelt sadness.” We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers’ social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).
Publisher: Cambridge University Press (CUP)
Date: 29-05-2020
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 2012
Publisher: Oxford University Press (OUP)
Date: 2012
DOI: 10.2522/PTJ.20100289
Abstract: Previous research has mainly targeted older people with high risk of falling. The effectiveness of exercise interventions in older people with mild levels of balance dysfunction remains unexplored. This study evaluated the effectiveness of a home balance and strength exercise intervention in older people systematically screened as having mild balance dysfunction. This was a community-based, randomized controlled trial with assessors blinded to group allocation. Study participants were older people who reported concerns about their balance but remained community ambulant (n=225). After a comprehensive balance assessment, those classified as having mild balance dysfunction (n=165) were randomized into the trial. Participants in the intervention group (n=83) received a 6-month physical therapist–prescribed balance and strength home exercise program, based on the Otago Exercise Program and the Visual Health Information Balance and Vestibular Exercise Kit. Participants in the control group (n=82) continued with their usual activities. Laboratory and clinical measures of balance, mobility, and strength were assessed at baseline and at a 6-month reassessment. After 6 months, the intervention group (n=59) significantly improved relative to the control group (n=62) for: the Functional Reach Test (mean difference=2.95 cm, 95% confidence interval [CI]=1.75 to 4.15), the Step Test (2.10 steps/15 seconds, 95% CI=1.17 to 3.02), hip abductor strength (0.02, 95% CI=0.01 to 0.03), and gait step width (2.17 cm, 95% CI=1.23 to 3.11). There were nonsignificant trends for improvement on most other measures. Fourteen participants in the intervention group (23.7%) achieved balance performance within the normative range following the exercise program, compared with 3 participants (4.8%) in the control group. Loss to follow-up (26.6%) was slightly higher than in some similar studies but was unlikely to have biased the results. A physical therapist–prescribed home exercise program targeting balance and strength was effective in improving a number of balance and related outcomes in older people with mild balance impairment.
Publisher: Wiley
Date: 03-08-2016
DOI: 10.1111/JOIM.12544
Publisher: Springer Science and Business Media LLC
Date: 10-03-2016
Publisher: Informa UK Limited
Date: 27-01-2016
DOI: 10.1080/10376178.2015.1129911
Abstract: Residential aged care facility (RACF) staff often operate in isolation. Research is lacking on networking between facilities. To explore outcomes associated with network formation between two RACFs as part of an action research approach to reducing falls. Action research approach with qualitative data collected. Twelve RACF staff from two facilities in regional Tasmania, Australia, formed a falls prevention action research group. Thematic analysis was undertaken of 22 audio-recorded fortnightly group meetings. This was the first opportunity for participants to meet colleagues from another facility in a professional context. The formation of an inter-facility network enabled the sharing of ideas and systems related to evidence-based falls prevention activities and other issues and galvanised a collaborative focus for action. An action research process can be used to create an inter-facility network. Such networks can decrease staff isolation and facilitate best resident care.
Publisher: Springer Science and Business Media LLC
Date: 29-10-2015
Publisher: Springer Science and Business Media LLC
Date: 21-09-2021
DOI: 10.1186/S12913-021-07019-6
Abstract: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.
Publisher: Cambridge University Press (CUP)
Date: 30-12-2015
DOI: 10.1017/S1041610214002774
Abstract: One of the most difficult times for family carers is when the person they care for moves into a residential care home. Although they are relieved to some extent of the day-to-day tasks of caring, they lose the company of their loved one, which can be especially difficult for spouse carers. It is not always easy to obtain residential placement near to the carer's home, so carers may have to travel some distance to see the person they care for, which they often do on a daily basis. Furthermore, they lose control of the care provided, including the perceived quality of that care. They may also lose services, such as home care, or benefits, such as carer payments, that they were receiving on behalf of the person they were caring for or due to their caring responsibilities. These issues are often poorly recognized and managed in a service system that focuses more on the instrumental rather than emotional and social aspects of care for older people. It is often thought that residential care placement signifies the end of the caring role. However, qualitative research in this area highlights that family care is not relinquished when the cared for person goes into residential care and this is clearly demonstrated in the review of the qualitative literature by Afram and colleagues in this issue.
Publisher: Elsevier BV
Date: 09-2014
DOI: 10.1016/J.ARCHGER.2014.04.001
Abstract: Previous research demonstrates that physical activity has psychological benefits for people of all ages. However, it is unclear whether people caring for a frail or ill relative would derive similar psychological benefits, considering the potentially stressful caregiver role. This article reviews the current literature describing the effect of physical activity interventions on the psychological status of caregivers. A search from January 1975 to December 2012 identified five intervention studies investigating physical activity and psychological status in caregivers. These focused on female Caucasian caregivers who were older than 60 years. The physical activity interventions improved stress, depression and burden in caregivers, but small s le sizes, short-term follow up and varying results limited the generalizability of the findings. There were few trials investigating male caregivers, and most care-recipients were people with dementia. Studies with caregivers of different ages and gender, with a range of physical activity interventions, are needed to clarify whether physical activity has psychological benefits for caregivers.
Publisher: BMJ
Date: 03-2015
Publisher: BMJ
Date: 03-2015
Publisher: Springer Science and Business Media LLC
Date: 17-02-2010
Publisher: Wiley
Date: 14-10-2023
DOI: 10.1111/AJR.13052
Publisher: Wiley
Date: 06-2010
DOI: 10.1111/J.1741-6612.2009.00390.X
Abstract: To investigate by randomised trial, health professional facilitated sessions aiming to overcome barriers to physical activity (PA), improve readiness to undertake PA, increase PA participation and improve fitness among older Australian adults from Macedonian and Polish backgrounds. One hundred and twenty-one participants (mean age 70 years, 63% female) were block randomised to the intervention group (three one-hour group education and goal setting sessions over 7 weeks) or control group (one-hour health promotion talk) following baseline assessment, with reassessment approximately 9 weeks later. No significant differences were found between experimental groups in primary (Stages of Change Questionnaire (SocQ), steps per day and Human Activity Profile) or secondary outcomes. This study has highlighted methodological considerations for PA health promotion and research with older adults from culturally and linguistically erse (CALD) backgrounds in a community setting. Investigation of older CALD adults' perceptions of what are 'adequate levels of PA' and methods of increasing PA is warranted.
Publisher: British Medical Journal Publishing Group
Date: 12-0003
Publisher: Springer Science and Business Media LLC
Date: 08-06-2022
DOI: 10.1186/S12904-022-00982-9
Abstract: Research on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. We combined published qualitative studies about end of life with dementia, focus group and in idual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five in idual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. The Graduate School and Faculty of Medicine Kyoto University (R1924–1).
Publisher: Cambridge University Press (CUP)
Date: 28-01-2022
DOI: 10.1017/S1041610221002787
Abstract: Grief research in family carers of people with dementia has increased. We aimed to report the prevalence of pre-death and post-death grief and to synthesize associated factors and the relationship between pre-death factors and post-death grief and services used to manage grief. (Prospero protocol: CRD42020165071) We systematically reviewed literature from PsycINFO, MEDLINE, CINAHL, and ASSIA until April 2020. Effectiveness of intervention data and studies not written in English were excluded qualitative studies were additionally excluded during study selection. Study quality was assessed using the Mixed Methods Appraisal Tool. Evidence was narratively summarized. Family non-paid carers of somebody with any dementia type. Validated measures of pre-death and/or post-death grief. We included quantitative data from 55 studies (44 rated as high quality). Most included solely spouse or adult child carers. Forty-one studies reported pre-death grief, 12 post-death grief, and 6 service use eight were longitudinal. 17% met the Prolonged Grief Disorder criteria pre-death (n = 1) and 6–26% (n = 4) of participants met the Complicated Grief criteria post-death. Being a spouse, less educated, caring for somebody with advanced dementia, and greater burden and depression were associated with higher pre-death grief. Lower education level and depression were predictive of higher post-death grief. Pre-death factors found to influence post-death grief were grief and depression. Limited service use evidence was reported. Awareness of characteristics which increase the likelihood of higher grief can help identify those in need of support. Future research should focus on what supports or services are beneficial to grief experiences.
Publisher: Wiley
Date: 18-12-2019
DOI: 10.1002/GPS.5034
Publisher: Wiley
Date: 10-12-2010
DOI: 10.1111/J.1741-6612.2010.00484.X
Abstract: Older people receiving informal care at home appear at high falls risk. This study investigates frequency, circumstances and factors associated with falls risk for older care recipients, and their informal caregivers. Ninety-six dyads, recruited from caregiver agencies, underwent a home assessment, including falls risk, function, depression, quality of life, self-rated health and carer burden. Care recipients were at high falls risk. In the past 12 months, 58% had fallen and 26% twice or more. Common falls risk factors were polypharmacy, multiple medical conditions and requiring functional assistance. Caregivers exhibited multiple health problems, moderate burden and reduced quality of life. Where care recipients had high falls risk, caregivers had significantly higher carer burden and depression. Low functional level and high care recipient health problems were independently associated with risk of falling (P < 0.05). Strategies to reduce falls risk in this cohort are necessary, together with supporting the needs of the caregiver.
Publisher: Cambridge University Press (CUP)
Date: 08-2019
Publisher: Human Kinetics
Date: 2009
DOI: 10.1123/JAPA.17.1.57
Abstract: The Getting Grounded Gracefully© program, based on the Awareness Through Movement lessons of the Feldenkrais method, was designed to improve balance and function in older people. Fifty-five participants (mean age 75, 85% women) were randomized to an intervention (twice-weekly group classes over 8 wk) or a control group (continued with their usual activity) after being assessed at baseline and then reassessed 8 wk later. Significant improvement was identified for the intervention group relative to the control group using ANOVA between-groups repeated-measures analysis for the Modified Falls Efficacy Scale score ( p = .003) and gait speed ( p = .028), and a strong trend was evident in the timed up-and-go ( p = .056). High class attendance (88%) and survey feedback indicate that the program was viewed positively by participants and might therefore be acceptable to other older people. Further investigation of the Getting Grounded Gracefully program is warranted.
Publisher: Wiley
Date: 29-05-2007
DOI: 10.1111/J.1365-2648.2007.04298.X
Abstract: This paper is a report of a study to compare perspectives of staff in residential elder care facilities with those of residents and family members from the same facilities about barriers to reducing the use of physical, chemical and environmental restraints. There is growing research evidence of the potential risk of physical and emotional harm of restraining residents in residential elder care facilities. Despite the potential harms, restraints continue to be a common practice in facilities across Australia. Little research has been undertaken to explore the barriers to reducing the use of restraints. Eighteen in idual interviews were conducted with staff, general practitioners and a pharmacist and three focus groups were conducted with a total of 12 residents and 17 family members associated with three residential elder care facilities in Melbourne, Australia in 2004. The three participating facilities were committed to reducing the use of restraints, although physical, chemical and environmental restraints were used in all three facilities. Barriers to reducing restraint use included fear of resident injury, staff and resource limitations, lack of education and information about alternatives to restraints, environmental constraints, policy and management issues, beliefs and expectations (of staff, family and residents), inadequate review practices and communication barriers. Further education and support for staff and family members in evidence-based practice in relation to resident care and restraint use is needed in at least some residential elder care facilities.
Publisher: Cambridge University Press
Date: 11-07-2019
Publisher: Royal College of Psychiatrists
Date: 04-2021
DOI: 10.1192/J.EURPSY.2021.732
Abstract: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults, including those living with dementia. In the context of COVID-19, decision-making surrounding place of care and place of death in this population involves significant new challenges. To explore key factors that influence place of care and place of death decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19. Rapid review of reviews, undertaken using WHO guidance for rapid reviews. Ten papers were included for full data extraction. These papers were published between 2005-2020. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. Papers included discussed actual place of death, as well as preferred. Results were ided into papers that explored the process of decision-making, and those that explored decision-making outcomes. Factors such as caregiver capacity, the availability of multidisciplinary teams, cultural appropriateness of care packages and advanced care planning were found to be key. The process and outcomes of decision-making for older people are affected by many factors – all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients.
Publisher: Cambridge University Press
Date: 11-07-2019
Publisher: Cambridge University Press (CUP)
Date: 30-04-2020
Publisher: CSIRO Publishing
Date: 2015
DOI: 10.1071/AH13184_CO
Abstract: Objective To explore associations among quality indicators (QI e.g. pressure ulcers, falls and/or fractures, physical restraint, use of multiple medications, unplanned weight loss) of the Victorian Public Sector Residential Aged Care Services (VPSRACS) with other demographic and health-related factors. Methods Data for 380 residents over a 3-month period were extracted retrospectively from client databases at four VPSRAC facilities. Results Four significant logistic regression models were developed. The strongest models related to falls and polypharmacy. Significant associations for these models included the following: (1) residents with a higher body mass index were 6% less likely (95% confidence interval (CI) 1%–11%) to fall, whereas high levels of cognitive impairment increased the risk of falling by 8% (95% CI 2%–14%) (2) being ambulant with a gait aid more than doubled the risk of falling compared with non-ambulant residents (95% CI 19%–546%) and (3) higher cognitive impairment was associated with a 6% (95% CI 1%–11%) reduction in the likelihood of polypharmacy. Conclusions Identification of significant relationships between the VPSRACS QI and other demographic and health-related factors is a preliminary step towards a more in-depth understanding of the factors that influence the QI and predict adverse events. What is known about the topic? Currently, the VPSRACS report on five QI. Previous research has shown associations between several of these indicators, but not all. What does this paper add? This paper examines associations between the five VPSRAC QI as well as other key demographic and health-related factors. Novel findings from regression analyses included an increased risk of falls associated with recommended body mass index and using gait aids, but no association between pressure ulcers and the Norton score. Regression models for other QI were limited by the small occurrences of the QI. However, significant associations were identified indicating that residents using a gait aid had a lower level of unplanned weight loss and residents with polypharmacy had higher unplanned weight loss. What are the implications for practitioners? This paper reinforces the value of collecting VPSRAC QI data to enable facilities to consider how these variables could impact on care quality and to proactively plan to reduce the risk of adverse events. Although QI data can be used to benchmark with other settings, this paper shows how QI data can be used to inform practice within a facility and help identify patient-related factors that may warrant further investigation.
Publisher: BMJ
Date: 06-2017
Publisher: BMJ
Date: 03-2017
Publisher: Wiley
Date: 11-12-2019
Publisher: Cambridge University Press (CUP)
Date: 17-01-2020
DOI: 10.1017/S1041610219002059
Abstract: Nearly half of care home residents with advanced dementia have clinically significant agitation. Little is known about costs associated with these symptoms toward the end of life. We calculated monetary costs associated with agitation from UK National Health Service, personal social services, and societal perspectives. Prospective cohort study. Thirteen nursing homes in London and the southeast of England. Seventy-nine people with advanced dementia (Functional Assessment Staging Tool grade 6e and above) residing in nursing homes, and thirty-five of their informal carers. Data collected at study entry and monthly for up to 9 months, extrapolated for expression per annum. Agitation was assessed using the Cohen-Mansfield Agitation Inventory (CMAI). Health and social care costs of residing in care homes, and costs of contacts with health and social care services were calculated from national unit costs for a societal perspective, costs of providing informal care were estimated using the resource utilization in dementia (RUD)-Lite scale. After adjustment, health and social care costs, and costs of providing informal care varied significantly by level of agitation as death approached, from £23,000 over a 1-year period with no agitation symptoms (CMAI agitation score 0–10) to £45,000 at the most severe level (CMAI agitation score ). On average, agitation accounted for 30% of health and social care costs. Informal care costs were substantial, constituting 29% of total costs. With the increasing prevalence of dementia, costs of care will impact on healthcare and social services systems, as well as informal carers. Agitation is a key driver of these costs in people with advanced dementia presenting complex challenges for symptom management, service planners, and providers.
Publisher: JMIR Publications Inc.
Date: 02-12-2021
Abstract: eople living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. e aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. e describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. he development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography pre-post well-being ratings and surveys psycholinguistic analysis of conversation facial emotion recognition facilitator ratings and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. he involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. ERR1-10.2196/35376
Publisher: Informa UK Limited
Date: 03-2003
Publisher: Cambridge University Press (CUP)
Date: 18-05-2016
DOI: 10.1017/S1041610216000740
Abstract: While videoconferencing, telementoring, and peer support have been shown to enhance services in some instances, there has been no research investigating the use of these technologies in supporting professionals managing clients with dementia. The objective of this research was to evaluate expansion of an old age psychiatry consultation service and pilot test a model to improve medical supervision and clinical governance for staff within regional and remote areas using remote information technology. The design was a mixed methods (qualitative and quantitative) evaluation using before, mid-point and post-implementation semi-structured interviews and questionnaires to examine orientation, acceptance, and impact underpinned by theoretical approaches to evaluation. Education evaluations used a Likert style response template. Participants were 18 dementia service staff, including staff from linked services and old age psychiatrists. Qualitative interviews addressed the pilot implementation including: expectations, experiences, strategies for improving the pilot, and perceived impact on work practice and professional development opportunities. There was high satisfaction with the program. The case conference process contributed to perceived improved outcomes for clients, family, and staff. Clinicians perceived improvement in family carer and staff carer stress and their confidence in managing clients with behavioral and psychological symptoms of dementia (BPSD). Thematic analysis indicated that the pilot enhanced professional development, decreased travel time, and improved team cohesion. Given the increasing aging population in regional, rural, and remote areas, initiatives using videoconferencing and telementoring will help to develop a confident and skilled workforce. This pilot program was found to be acceptable and feasible. Potential benefits for clients and family carers should be examined in future resesarch.
Publisher: MDPI AG
Date: 09-06-2022
DOI: 10.3390/NU14122395
Abstract: Eating and drinking difficulties, such as loss of appetite and swallowing problems, are common in dementia, but little is known about the experiences of ethnic minority groups who are managing these difficulties at home. The purpose of our study was to explore the meaning of food, the impact of dementia on eating and drinking, and carers’ experiences of support. We undertook semi-structured interviews with 17 carers and people with dementia from ethnic minority backgrounds living in England, using thematic analysis to analyse the data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged the people living with dementia to eat and drink, as did social interactions, although these could lead to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. The carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices.
Publisher: Oxford University Press (OUP)
Date: 11-2019
DOI: 10.1093/GERONI/IGZ038.588
Abstract: The aim of this Australian study was to investigate effects on depression of a 6-month in idually tailored home-based exercise program for caregivers, designed to be done with the person they care for. Ninety-one caregiver-care recipient dyads and 30 caregiver-only participants (caregivers scoring ≥4 on the 15 item Geriatric Depression Scale (GDS-15)) were randomized into one of three groups: exercise intervention (n=50, 34 dyads and 16 caregiver only), social support control (n= 50, 42 dyads and 8 caregiver only) or usual care control (n= 21, 15 dyads and 6 caregiver only). The exercise group completed an in idualised program based on the Otago-plus. The primary outcome was the proportion of participants with GDS-15 ≤4. Outcome assessors were blinded to group assignment. There were no significant difference in depression between the physical activity intervention group and the social control (OR 1.06, 95% Confidence Interval (CI) 0.44, 2.56) and the physical activity intervention group and the usual care control (OR 1.51 95% CI 0.46, 4.94) at six months or at 12-months. However, more than 50% of caregivers in all three groups no longer had a GDS-15 score & at 6 months. Sub-group analysis revealed that after 6 months caregivers in the exercise group caring for someone with an MMSE ≥24 were significantly less depressed than those caring for someone with an MMSE score of & compared with social (p value & .02) and usual care groups (p value & 0.02). A dyad exercise intervention may be beneficial for those caring for someone without cognitive decline.
Publisher: SAGE Publications
Date: 07-02-2022
DOI: 10.1177/14713012211066674
Abstract: When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death. This was a mixed methods cross-sectional study. Family carers of people with dementia ( n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-s le ( n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers’ feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty (2) support from the system and (3) how death is perceived by the carer. While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative’s death.
Publisher: CSIRO Publishing
Date: 2007
DOI: 10.1071/AH070642
Abstract: This study aimed to explore how older people and health professionals conceptualise health in older age. Thirty-six older people and 41 health professionals participated in 10 focus groups (five with older people and five with health professionals) and discussed concepts of health, the modifiable aspects of health, and barriers and motivators to undertaking health-promoting behaviour change. Both older people and health professionals were found to conceptualise health in a holistic manner. While health professionals tended to place the source of poor health on failures of social connectedness and poor service delivery, older people stressed the importance of taking ownership of one?s own health and actively seeking out health promoting activities and services.
Publisher: Springer Science and Business Media LLC
Date: 03-07-2017
Publisher: Wiley
Date: 07-07-2015
DOI: 10.1002/GPS.4323
Abstract: Depression is an adverse outcome frequently seen in carers. With the increasing ageing population and reliance on informal carers, this study aims to identify factors associated with depression in carers in the older age group, using factors that have not been previously investigated. We conducted a cross-sectional analysis of 202 older carers using the Geriatric Depression scale, demographics, personality traits, attitudes to ageing and other carer characteristics. Increased hours spent caring and higher levels of neuroticism were all factors associated with depression. The care-recipient diagnosis, other personality traits, attitudes to ageing, leisure-physical activity (PA) and domestic-PA were not significantly associated with depression. These findings have important implications for interventions to target at-risk carers.
Publisher: Wiley
Date: 15-01-2020
DOI: 10.1002/GPS.5251
Abstract: Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams. We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care. EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia.
Publisher: Cambridge University Press (CUP)
Date: 15-06-2015
DOI: 10.1017/S1041610215000873
Abstract: Attitudes to aging have been investigated in non-carer populations and found to have important relationships with physical and mental health. However, these have not been explored in an older carer s le, although it is becoming increasingly important to clarify variables which are linked with positive carer outcomes. This is one of the first studies to report on older carers, their attitudes to aging, and the relationship with carer-related factors. A cross-sectional study of 202 carers with a mean age of 70.8 years was conducted in Victoria, Australia, using carer demographic data, carer factors such as depression (using the Geriatric Depression Scale), burden (using the Zarit Burden Inventory, ZBI), physical health, personality, and attitudes to aging (using the Attitudes to Aging Questionnaire, AAQ). Spearman rank correlation and hierarchical regression analyses were used. This study showed that carers had overall positive attitudes to aging inspite of their caring role. It also identified that carer factors including depression and burden contributed a significant amount of the variance to attitudes to aging in terms of physical change and psychosocial loss. Personality traits, specifically neuroticism, and extraversion, were also important contributors to attitudes to aging. Results from this study demonstrated that inspite of moderate levels of depression and spending significant time caring, carers reported positive attitudes to aging. Treating depression, decreasing burden, and investigating the benefits of caring may assist older carers maintain their well-being.
Publisher: CSIRO Publishing
Date: 2011
DOI: 10.1071/AH10932
Abstract: Objective. This paper examines the quality and safety of the physical environment in Australian residential aged care facilities (RACFs). Design. Cross-sectional study. One assessor completed environmental audits to identify areas of the physical environment that needed to be addressed to improve the wellbeing and safety of residents. Setting. Nine RACFs participating in a broader falls prevention project were audited. RACFs were located in Queensland, Tasmania or Victoria and were chosen by convenience to represent high level, low level, dementia and psychogeriatric care, regional and metropolitan facilities, small and large facilities and a culturally specific facility. Main outcome measure. An environmental audit tool was adapted from a tool designed to foster older person friendly hospital environments. The tool consisted of 147 items. Results. Across all sites 450 items (34%) required action. This ranged from 21 to 44% across sites. The audit domains most commonly requiring action included signage, visual perception and lighting, and outdoor areas. Conclusions. Although not representative of all residential facilities in Australia, this audit process has identified common environmental problems across a erse mix of residential care facilities. Results highlight the need for further investigation into the quality of physical environments, and interventions to improve physical environments in Australian RACFs. What is known about the topic? Despite the importance of the physical environment on the health, wellbeing and safety of older people in residential aged care facilities, few studies have comprehensively evaluated the physical environment in facilities in Australia. What does this paper add? This paper provides findings from comprehensive audits of nine residential aged care facilities representing a broad range of facility settings in terms of location, level and type of care and target population. Findings indicate that each facility had at least 21% of items requiring action with an average of 34% of items requiring action across all facilities. What are the implications for practitioners? There is a need to undertake intermittent, thorough assessments of the physical environments in which residents live and, if applicable, implement strategies or modifications to improve the environment. Areas requiring particular consideration may be lighting, colour contrasts, signage and outdoor areas.
Location: United Kingdom of Great Britain and Northern Ireland
Start Date: 2022
End Date: 2025
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2019
End Date: 2020
Funder: Marie Curie
View Funded ActivityStart Date: 2020
End Date: 2020
Funder: Economic and Social Research Council
View Funded ActivityStart Date: 2019
End Date: 2023
Funder: Economic and Social Research Council
View Funded ActivityStart Date: 2013
End Date: 2017
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2016
End Date: 2019
Funder: Alzheimer's Society
View Funded ActivityStart Date: 2012
End Date: 2016
Funder: National Health and Medical Research Council
View Funded Activity