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High health literacy (HL) is important to optimise health outcomes, particularly for older people (who are substantial consumers of health services) and their adult caregivers. The aim of this systematic review was to evaluate measurement properties of HL instruments tested with these population groups. Six databases (MEDLINE (OVID); CINAHL; EMBASE (OVID); PsycInfo; Scopus; Cochrane Library) were searched for studies evaluating eight measurement properties of HL tools administered to older people or their caregivers. Only studies evaluating multi-domain self-report HL tools were included in analyses, using the COSMIN methodology. From 4261 unique papers located, 11 met inclusion criteria; six reported measurement properties of three HL self-report tools administered to older people (HLQ, eHEALS, and HeLMS) so are reported in this review, none involved caregiver samples. The HLQ and HeLMS were rated "moderate," and eHEALS "low" for tool development. The HLQ, examined in four included studies, had the highest ratings and quality of evidence across the three measurement properties investigated in included papers. The HLQ was the most highly rated self-report HL tool of just three tested with older people. Further studies evaluating measurement properties of self-report HL tools used with older people and/or their caregivers are needed. Health literacy is important to optimise health outcomes of interventions for older people and their adult caregivers. Few studies have evaluated measurement properties of self-report / multi-domain health literacy tools for this population. The Health Literacy Questionnaire (HLQ) had the highest ratings and quality of evidence across the three measurement properties investigated in included studies, and is recommended for use in rehabilitation settings. [ABSTRACT FROM AUTHOR]

Background: What it means to live with dementia is changing. Autonomy, independence and continued community involvement are now recognised goals. As a result, new initiatives are required to support people with dementia to sustain their quality of life, update community understanding and reflect resultant change in community attitudes. Measuring the impact of such initiatives can help determine the extent of their success, inform needs for further intervention and, ultimately, shape policy. Objective: To discover – or, if this could not be achieved, develop – a questionnaire measuring community attitudes towards people with dementia reflecting these newly recognised goals in terms of both content and expression. Methods: A four-stage approach was used in this research: a scoping review of the literature, questionnaire development and expert review, questionnaire piloting, including with people living with dementia and their families, and preliminary psychometric testing. Results: The review failed to retrieve a suitable existing questionnaire. A ten-item questionnaire, the Dementia Community Attitudes Questionnaire was developed, content validity was established by expert review and piloting led to refinements. Exploratory factor analysis (N = 92) generated an interpretable three-factor solution. Cronbach's alpha coefficient for Factor 1, Engagement, was good (0.855); for Factor 2, Challenges, and Factor 3, Decision-Making, reliability was acceptable (0.785 and 0.709, respectively). Conclusion: Supporting people with dementia to sustain their quality of life requires new initiatives and suitable measures to evaluate their impact. The Dementia Community Attitudes Questionnaire was developed with input from people with dementia, their families, and relevant experts. Items reflect current opportunities for people with dementia to retain their independence, autonomy and community engagement for as long as possible. Following further psychometric testing, this new questionnaire may be useful to evaluate such initiatives. [ABSTRACT FROM AUTHOR]

Objective: To determine the re‐test reliability of the Health Literacy Questionnaire (HLQ) with carers of older adults discharged from hospital or attending the outpatient clinic. Methods: Carers completed the HLQ twice by telephone and rated the acceptability of completing the tool. Tool completion time was recorded. Correlations were calculated between the test occasions using intraclass correlation coefficients (ICC) and 95% confidence intervals. Results: Fifty‐one carers of older patients participated. The HLQ showed good reliability (ICC = 0.75‐0.90) for seven of the nine scales and moderate reliability (0.50‐0.74) for the other two scales. Median completion time was 16.5 minutes (range 9‐50), and acceptability was rated as 9.5/10. Conclusion: The HLQ is a reliable tool for use with carers of older adults attending hospital. However, the length of time for completion of the HLQ may limit its feasibility for use by hospital staff and carers, given the high stress and time pressures of acute care. [ABSTRACT FROM AUTHOR]

Background: There is little evidence that outlines how family carers understand the person with dementia's perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim: This research aimed to explore and describe family carers' experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia's expectations for the future and what they believed was important for the person to whom they provided care. Method: Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings: Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion: This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers' perspectives of the changing nature of decision making during the dementia trajectory. Conclusion: Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is 'person centred' now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation. [ABSTRACT FROM AUTHOR]

Abstract Background Typically, dementia involves progressive cognitive and functional deterioration, leading to death. A palliative approach recognizes the inevitable health decline, focusing on quality of life. The approach is holistic, proactive, supports the client and the family, and can be provided by the client's usual care team. In the last months of life, distressing symptoms, support needs, and care transitions may escalate. This project trialed a strategy intended to support a consistent, high quality, palliative approach for people with dementia drawing close to death. The strategy was to implement two communities of practice, drawn primarily from service provider organizations across care sectors, supporting them to address practice change. Communities comprised practitioners and other health professionals with a passionate commitment to dementia palliative care and the capacity to drive practice enhancement within partnering organizations. Project aims were to document: (i) changes driven by the communities of practice; (ii) changes in staff/practitioner characteristics during the study (knowledge of a palliative approach and dementia; confidence delivering palliative care; views on death and dying, palliative care, and a palliative approach for dementia); (iii) outcomes from perspectives of family carers, care providers, and community of practice members; (iv) the extent to which changes enhanced practice and care continuity; and (v) barriers to and facilitators of successful community of practice implementation. Methods/design This action research project was implemented over 14 months in 2010/11 in metropolitan Perth, Western Australia and regional Launceston, Tasmania. Each state based community of practice worked with the researchers to scope existing practice and its outcomes. The research team compiled a report of existing practice recommendations and resources. Findings of these two steps informed community of practice action plans and development of additional resources. Change implementation was recorded and explored in interviews, comparisons being made with practice recommendations. Changes in staff/practitioner characteristics were evaluated using survey data. Findings from semi structured interviews and survey administration established outcomes from perspectives of family carers, care providers, and community of practice members. Consideration of processes and outcomes, across the two state based settings, informed identification of barriers and facilitators. Community of practice reflections also informed study recommendations.

Background: People with dementia continue to voice concerns that health professionals are reluctant to engage with them about the planning of their care and support. Instead, their perspective is that such plans are often made by others and fail to reflect their wishes. Objective: This review aimed to examine investigations of the participation of people living with dementia in the planning of their care and support, when they have also provided study data. Methods: An integrative literature review was conducted to identify, critique, and synthesise relevant research findings. Eight electronic databases were searched to identify peer reviewed journal articles that met inclusion criteria. In addition, reference lists of included articles were searched, and a subject expert was consulted about any possible omissions. Results: From the 346 articles accessed, seven met inclusion criteria for review. The quality appraisal showed that one article reported only pilot data; several more reported small sample sizes; and, in two instances, there was a lack of information about the psychometric properties of data collection tools and about recruitment and attrition rates. Conclusions: There has been limited investigation of the participation of people with dementia in the planning of their support when they have also contributed research data. Findings provide some evidence of their participation by attending education programme, setting goals in cognitive rehabilitation therapy and contributing to advance care planning. [ABSTRACT FROM AUTHOR]

There is lack of a suitable assessment tool that can be used routinely and systematically by hospital staff to address family caregivers' (FCs') support needs. This paper describes a novel approach to identifying and addressing FCs' needs following hospital discharge of the older person receiving care. Setting and participants FC recruitment occurred on the patient's discharge from a tertiary hospital in Western Australia; 64 completed the study; 80% were female; mean age 63.2 years. Intervention The Further Enabling Care at Home (FECH) programme was delivered over the telephone by a specially trained nurse and included: support to facilitate understanding of the patient's discharge letter; caregiver support needs assessment and prioritisation of urgent needs; and collaborative guidance, from the nurse, regarding accessing supports. Results Sixty-four FCs completed the FECH programme. The top three support needs identified by the FCs were: knowing what to expect in the future (52%), knowing who to contact if they were concerned (52%) and practical help in the home (36%). The telephone-based outreach service worked well and was convenient for the nurse and the FCs, and saved on transport, time and money. Most of the FCs appreciated the systematic approach to identify and articulate their needs and were satisfied with the support they received, mainly navigation through the systems, problem solving, self-care strategies, explanation of illness, symptoms and medication and access to after-hours services. Conclusions In order to guide services which may consider adopting this systematic approach to supporting FCs and integrating it into their routine practice, this evaluation of the FECH programme has described the processes implemented and highlighted the factors that hindered or facilitated these processes to engage caregivers with appropriate services in a timely manner. Positive feedback indicated that the programme was a useful addition to hospital discharge planning. Trial registration number ACTRN12614001174673; Results. [ABSTRACT FROM AUTHOR]

Background: Participatory action research (PAR) is a credible, culturally appropriate methodology that can be used to effect collaborative change within vulnerable populations. Aim/objective: This PAR study was undertaken in a Western Australian metropolitan setting to develop and evaluate the suitability, feasibility and effectiveness of an Aboriginal peer-led home visiting programme. A secondary aim, addressed in this paper, was to explore and describe research methodology used for the study and provide recommendations for its implementation in other similar situations. Methods: PAR using action learning sets was employed to develop the parent support programme and data addressing the secondary, methodological aim were collected through focus groups using semi-structured and unstructured interview schedules. Findings were addressed throughout the action research process to enhance the research process. Results: The themes that emerged from the data and addressed the methodological aim were the need for safe communication processes; supportive engagement processes and supportive organisational processes. Conclusions: Aboriginal peer support workers (PSWs) and community support agencies identified three important elements central to their capacity to engage and work within the PAR methodology. This research has provided innovative data, highlighting processes and recommendations for child health nurses to engage with the PSWs, parents and community agencies to explore culturally acceptable elements for an empowering methodology for peerled home visiting support. There is potential for this nursing research to credibly inform policy development for Aboriginal child and family health service delivery, in addition to other vulnerable population groups. Child health nurses/researchers can use these new understandings to work in partnership with Aboriginal communities and families to develop empowering and culturally acceptable strategies for developing Aboriginal parent support for the early years. Impact Statement Child health nurses and Aboriginal communities can collaborate through participatory action research to develop peer-led support for the early years. Indigenous Australian peoples are people who identify as Aboriginal or Torres Strait Islander. Respectfully, throughout this paper, they will be described as Aboriginal. [ABSTRACT FROM AUTHOR]

The objective of this study was to assess whether purchasing a personal alarm service makes a difference in a range of health outcomes for community dwelling older adults. The prospective cohort study involved 295 individuals for whom data on emergencies experienced at home were collected over a period of 12 months. Purchasers of alarms, compared to nonpurchasers, benefitted in terms of feeling more safe and secure and being more active around their home. Outcomes experienced after an emergency were similar for both groups with no differences found in terms of time spent on floor, or hospitalizations. [ABSTRACT FROM PUBLISHER]

Current research identifies advanced dementia to be the terminal phase of this progressive and incurable condition. However, there has been relatively little investigation into how family members of people with advanced dementia understand their relative's condition. In this article, we report on semi-structured interviews with 10 family members of people with advanced dementia, in a residential aged care facility. Using a qualitative, descriptive design, we explored family members' understandings of dementia, whether they were aware that it was a terminal condition, and the ways they developed their understandings. Findings revealed that the majority of family members could not recognize the terminal nature of dementia. Relying on predominantly lay understandings, they had little access to formal information and most failed to conceptualize a connection between dementia and death. Moreover, family members engaged in limited dialogue with aged care staff about such issues, despite their relatives being in an advanced stage of the disease. Findings from our study suggest that how family members understand their relative's condition requires greater attention. The development of staff/family partnerships that promote shared communication about dementia and dying may enhance family members' understandings of the dementia trajectory and the types of decisions they may be faced with during the more advanced stages of the disease. [ABSTRACT FROM AUTHOR]

Background/Objectives To describe how people experiencing dementia define quality of life and how this may be supported. Design Qualitative descriptive component of mixed methods cross-sectional study. Setting Western Canadian community (4-h weekly care minimum), supportive housing (24-h support/supervision), personal care homes (24-h nursing). Participants One hundred and thirty-six persons aged 65+ experiencing dementia. Measurements Semi-structured interview questions. Rating of meeting life’s goals. Results Participants characterised quality of life as: freedom, independence, having basic needs met, physical health, engagement in meaningful activities and tranquility. A need for self-determination/choice was evidenced across all domains. Increased access to skilled nursing care, support for meaningful engagement with family and meeting life’s goals were endorsed as adding most to quality of life; 43% reported meeting all life’s major goals. Conclusion People experiencing dementia may have better quality of life when choice/self-determination is supported. Enhancements in care environment, independence, engagement and meeting of life’s goals merit urgent attention. [ABSTRACT FROM AUTHOR]

Background Dementia is a significant issue globally, including in Thailand, and exercise is known to have health benefits for people living with dementia. However, little is known about exercise acceptable to, and feasible for, this population group in low-to-middle income countries although, more broadly, it is recognised that health-related behaviours are influenced by the perceptions of the individual, which exist within a cultural context. Objectives To explore and describe perceptions of appropriate exercise for people living with dementia in Bangkok, Thailand. Design Qualitative exploratory descriptive. Setting Bangkok, Thailand. Participants Nine professionals - experts in exercise, dementia care and relevant policy development - and nine dyads of people with dementia and their family caregivers all recruited using purposive sampling. Methods Semi-structured interviews subjected to thematic analysis. Results Three themes emerged: how exercise was defined, perceived benefits of exercise and how exercise should be implemented. Professionals recognised three exercise elements: aerobic exercise plus balance and strength training. Dyads recognised home-based activities (e.g., housework) and walking. Both groups recognised benefits of exercise in maintaining health and function and improving mood and sleep. Only health professionals identified falls risk reduction. There was limited appreciation of benefits for caregivers by maintaining function in care recipients. Professionals deemed that exercise should address all three elements, using easily accessible low-cost resources. The need for safety was emphasised, and there was agreement that in-home exercise was appropriate. Family/cultural values were evident that could present barriers to exercise implementation. Conclusion Changing health-related behaviours requires an understanding of individual perspectives, which exist within a cultural context. This study has illuminated the Thai context and has implications beyond this. Findings emphasise a need for potential benefits to be sufficiently understood by family caregivers to overcome any culturally based reluctance to promote exercise in older people. Implications for practice Nurses have a key role in supporting care givers of older persons with dementia supervise home based exercise. Nurses need to develop knowledge of aerobic exercise to teach caregivers and the older person with dementia. Muscle strength and aerobic exercise assists in the older person's ability to undertake ADL. [ABSTRACT FROM AUTHOR]

This action research study was conducted to trial a strategy intended to support a consistent, high-quality, palliative approach for people with dementia drawing close to death--the implementation of a community of practice. Professionals from community/residential care and hospitals formed this community of practice, which took on the role of an action research group. The group was supported to identify and address practice problems. Four action plans were implemented; outcomes from two are reported. When actioning the plan 'providing education and information for the staff', the staff's ratings of sessions and resources were positive but impacts upon knowledge, views, or confidence were small. When actioning 'supporting families', families providing care in non-hospital settings received information about severe dementia from suitably prepared staff, plus contact details to access support. Family feedback was primarily positive. Reference to additional practice change frameworks and inclusion of specialist palliative care professionals are recommendations for future initiatives; also focusing on targeted, achievable goals over longer timeframes. [ABSTRACT FROM AUTHOR]

Background: Personal alarms support independent living and have the potential to reduce serious consequences after a fall or during a medical emergency. While some Australian states have government funded personal alarm programs, others do not; but user-pays services are available. Although several studies have examined the profiles of alarm users, little is known about the risk profile of non-users. Specifically, whether there are "at risk" individuals who are unable, or choose not to purchase a service, who experience a home-based emergency in which an alarm could have mitigated an adverse outcome. This study aimed to describe the 'risk profile' of purchasers and non-purchasers of alarms; explore the reasons behind the decision to purchase or not to purchase and identify how often emergency assistance was needed and why.Methods: Purchasers and non-purchasers were followed for one year in this prospective cohort study. Demographic, decision-making and risk factor data were collected at an initial face-to-face interview, while information about emergencies was collected by monthly calls.Results: One hundred and fifty-seven purchasers and sixty-five non-purchasers completed the study. The risk profiles between the groups were similar in terms of gender, living arrangements, fall history and medical conditions. Purchasers (Mean = 82.6 years) were significantly older than non-purchasers (Mean = 79.3 years), (t(220) = -3.38, p = 0.000) and more functionally dependent on the IADL (z = -2.57, p = 0.010) and ADL (z = -2.45 p = 0.014) function scores. Non-purchasers (Mean = 8.04, SD = 3.57) were more socially isolated with significantly fewer family networks than purchasers (Mean = 9.46, SD = 3.25) (t(220) = -2.86, p = 0.005). Both groups experienced similarly high numbers of emergencies, 38.2 % of purchasers and 41.5 % of non-purchasers had at least one emergency where an alarm could have assisted. Main reasons for non-purchase were: cost (77 %), limited alarm range (51 %), no need (39 %) and lack of suitable contacts (30 %).Conclusion: There are older individuals who are at high risk of an emergency who are choosing, often for financial and lack of family support reasons, not to purchase a personal alarm service. Greater availability of government funded subsidy schemes would enable these individuals to access a service. Increasing the range over which alarms work could increase their appeal to a broader range of older persons living in the community. Future research should consider how strategies that improve social isolation from family and challenge clients' beliefs about their own health and independence can support increased access to personal alarm services. [ABSTRACT FROM AUTHOR]

Background: Presentations to hospital of older people receiving family care at home incur substantial costs for patients, families, and the health care system, yet there can be positive carer outcomes when systematically assessing/ addressing their support needs, and reductions in older people's returns to hospital attributed to appropriate discharge planning. This study will trial the Further Enabling Care at Home program, a 2-week telephone outreach initiative for family carers of older people returning home from hospital. Hypotheses are that the program will (a) better prepare families to sustain their caregiving role and (b) reduce patients' re-presentations/readmissions to hospital, and/or their length of stay; also that reduced health system costs attributable to the program will outweigh costs of its implementation. Methods/Design: In this randomised controlled trial, family carers of older patients aged 70+ discharged from a Medical Assessment Unit in a Western Australian tertiary hospital, plus the patients themselves, will be recruited at discharge (N = 180 dyads). Carers will be randomly assigned (block allocation, assessors blinded) to receive usual care (control) or the new program (intervention). The primary outcome is the carer's self-reported preparedness for caregiving (Preparedness for Caregiving Scale administered within 4 days of discharge, 2-3 weeks post-discharge, 6 weeks post-discharge). To detect a clinically meaningful change of two points with 80 % power, 126 carers need to complete the study. Patients' returns to hospital and subsequent length of stay will be ascertained for a minimum of 3 months after the index admission. Regression analyses will be used to determine differences in carer and patient outcomes over time associated with the group (intervention or control). Data will be analysed using an Intention to Treat approach. A qualitative exploration will examine patients' and their family carers' experiences of the new program (interviews) and explore the hospital staff's perceptions (focus groups). Process evaluation will identify barriers to, and facilitators of, program implementation. A comprehensive economic evaluation will determine cost consequences. Discussion: This study investigates a novel approach to identifying and addressing family carers' needs following discharge from hospital of the older person receiving care. If successful, the program has potential to be incorporated into routine post-discharge support. [ABSTRACT FROM AUTHOR]

Background: Escalating numbers of people are experiencing dementia in many countries. With increasing consumer needs, there is anticipated growth in the numbers of people providing diagnostic evaluations, treatments, and care. Ensuring a consistent and contemporary understanding of dementia across all of these groups has become a critical issue. This study aimed to reach consensus among dementia experts from English speaking countries regarding essential and contemporary knowledge about dementia. Methods: An online Delphi study was conducted to examine expert opinion concerning dementia knowledge with three rounds of data collection. A sample of dementia experts was selected by a panel of Australian experts, including a geriatrician and three professors of aged care. Purposive selection was initially undertaken with the sample expanded through snowballing. Dementia experts (N = 19) included geriatricians, psychologists, psychiatrists, neuroscientists, dementia advocates, and nurse academics from the United Kingdom, United States, and Australia. In the first round, these participants provided open-ended responses to questions determining what comprised essential knowledge about dementia. In the second round, responses were summarised into 66 discrete statements that participants rated on the basis of importance. In the third round, a rank-ordered list of the 66 statements and a group median were provided and participants rated the statements again. The degree of consensus regarding importance ratings was determined by assessing median, interquartile range, and proportion of experts scoring above predetermined thresholds. Correlation scores were calculated for each statement after the final round to identify changes in statement scores. Results: The Delphi experts identified 36 statements about dementia that they considered essential to understanding the condition. Statements about care for a person experiencing dementia and their care giver represented the largest response category. Other statements, for which full or very high consensus was reached, related to dementia characteristics, symptoms and progression, diagnosis and assessment, and treatment and prevention. Conclusions: These results summarise knowledge of dementia that is considered essential across expert representatives of key stakeholder groups from three countries. This information has implications for the delivery of care to people with the condition and the development of dementia education programs. [ABSTRACT FROM AUTHOR]

Many frail older people are likely to suffer from fatigue, but tools to measure fatigue in this population are lacking. Stage one of this study explored and described the experiences of fatigue of 12 older people from Australian residential aged care facilities. Themes identified were pacing yourself, battling on, hitting rock bottom, feeling safe, and moving on. Findings indicated that, with support, frail elders may be able to manage fatigue effects themselves. A measure of fatigue was developed from stage one findings, with reference to the literature. In stage two of the study, the Frail Elder Fatigue Assessment Tool was subjected to panel review, piloting, and refinement. The refined tool comprises 20 items in three subscales: fatigue effects; fatigue resources; and adaptation to fatigue. Further work is required to establish the tool's psychometric properties, but it should then be useful for both research and clinical assessment purposes. [ABSTRACT FROM AUTHOR]