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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]

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]