Knowledge of Dementia: Do family members understand dementia as a terminal condition?

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

A longitudinal, qualitative study exploring sustained adherence to a hand exercise programme for Rheumatoid Arthritis evaluated in the SARAH Trial

Purpose: This study explores the experience of participants taking part in a hand exercise programme for people with rheumatoid arthritis with a focus on adherence. The exercise programme was tested in a randomised controlled trial. This parallel qualitative study will inform future implementation into clinical practice. Method: Twenty-seven semi-structured interviews from 14 participants were undertaken at 2 time points (4 and 12 months after randomisation). We collected data of participants’ experiences over time. This was guided by an interview schedule. Interview data were analysed using interpretative phenomenological analysis which is informed by phenomenological and hermeneutic theory. We recruited participants from National Health Service rheumatology and therapy departments. Results: At 4 months, 11/14 participants reported continuing with the exercises. By 12 months, 7/13 participants still reported exercising. The ability to establish a routine determined whether participants adhered to the exercise programme. This was sometimes influenced by practical issues. We also identified facilitators and barriers to regular exercise in the themes of – the therapeutic encounter, perceived benefit of exercises, attitude of mind, confidence and unpredictability. Conclusions: Establishing a routine was an important step towards participants being able to exercise independently. Therapists provided participants with skills to continue to exercise while dealing with changes in symptoms and schedules. Potential barriers to long term exercise adherence need to be taken into account and addressed for successful implementation of this programme

Dementia Knowledge Assessment Tool Version Two: Development of a tool to inform preparation for care planning and delivery in families and care staff

Care for the person with dementia requires understanding of the person’s perspective and preferences, integrated with knowledge of dementia’s trajectory and appropriate care. Version One of the Dementia Knowledge Assessment Tool addressed such knowledge in care workers; Version Two is for families as well as staff. Content validity was established during development. Revisions addressed clarity, time for completion, and reliability. When 671 staff completed Version One before an education intervention, internal consistency reliability estimates exceeded 0.70. Validity was supported by higher scores in professional versus nonprofessional staff and following the education. Version Two was used with 34 family carers and 70 staff members. Internal consistency reliability (Cronbach’s alpha coefficient) was promising (0.79, both groups). Completion was within 15 minutes. Median correct responses (from 21) were 14 for families (range 4–20) and 16 for the staff (range 3–21). Eighteen staff members (26%) and two family carers (6%) reported substantive dementia education. Inclusion of the person with dementia in care planning is often limited because of a late diagnosis and the progressive impacts of the condition. Establishing a shared staff–family understanding of the dementia trajectory and care strategies likely to be helpful is therefore critical to embarking upon the development and implementation of collaborative long term and end-of-life care plans. Version Two can help establish needs for, and outcomes of, education programs and informational resources in a way that is feasible, minimises burden, and facilitates comparisons across family and staff carer groups

Test-retest reliability of the Health Literacy Questionnaire (HLQ-Br) in Brazilian carers of older people

The rapid aging of the Brazilian population is seeing people living longer but with comorbidities more common in older people and higher dependence in activities of daily living. Due to these factors, support from formal and informal carers is needed more frequently. Many informal carers are family members who manage the health of the older person they are caring for, including accompanying them to medical appointments and advocating for them when they are hospitalized1,2. As such, carers of older people often have a key role in accessing, understanding and supporting the implementation of health-related recommendations for the older person they provide care for..

Can a community of practice enhance a palliative approach for people drawing close to death with dementia?

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

Developing and testing a strategy to enhance a palliative approach and care continuity for people who have dementia: Study overview and protocol

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

Pan African strategy for the progressive control of peste des petits ruminants (Pan African ppr strategy)

Peste des petits ruminants (PPR) is a major constraint to the livelihoods and food security of small scale farmers. The epidemiology and biology of PPR virus has much in common with rinderpest virus (RP), an agent that has been globally eradicated. This document presents a strategy for the progressive control of PPR that builds upon the lessons learnt from rinderpest eradication. Progressive control relies upon a modular approach that consists of a series of self-sufficient phases each with its own set of sustainable results. Key intermediate results will be proven business models for sustainable PPR control service delivery and enhanced capacity of animal health institutions to target control services to critical control points. The program will foster an adaptive management approach that integrates learning approaches to drive animal health institutional innovation. The coordinated drive towards long term animal health goals will add value to on-going investments in infectious disease control

The potential of tag-based contextualization mechanisms to leverage the sale of regional products and promote the regions through products

In small and rural regions, where we can many times find top quality products, there is, many times, a greater difficulty in promoting their products. This difficulty begins in the nature of the companies that manufacture these products. These companies are typically family-owned or small-sized, not having large capacity to carry out very elaborate marketing strategies. They often depend of the tourist attractiveness of the regions themselves to leverage their sales. This paper discuss the challenges for the promotion of regional products and rural regions, review the role of smartphones and the main tag-based contextualization mechanisms and their potential for leverage the sale of rural regional products and, finally, presents a cooperationbased conceptual model, where are combined contextualization-tags and mobile devices to promote regional products, leverage sales and promote rural regions by attracting new visitants, making regional products a window-mechanism to the promotion of rural regions heritage and tourism-related services

Who Knows, Who Cares? Dementia knowledge among nurses, care workers, and family members of people living with dementia

The number of people with dementia is increasing rapidly worldwide. Commensurate with population ageing, the use of nursing homes in Australia (known as residential aged care facilities) for individuals with dementia is growing. As a terminal condition, dementia is best managed by instituting a palliative approach to care. A good knowledge of dementia, including its progression and management, among staff and families of people living with dementia is essential for clear decision making and the provision of appropriate care. Yet there is limited information regarding relative levels of dementia knowledge. This paper reports the results of a study that assessed dementia knowledge among these two cohorts using the Dementia Knowledge Assessment Tool; the study surveyed 279 staff members and 164 family members of residents with dementia. Dementia knowledge deficits were evident in both cohorts across a range of areas. It is critical that dementia knowledge deficits are identified and addressed in order to support evidence-based dementia care