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

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

Visualization and Analysis of 3D Microscopic Images

In a wide range of biological studies, it is highly desirable to visualize and analyze three-dimensional (3D) microscopic images. In this primer, we first introduce several major methods for visualizing typical 3D images and related multi-scale, multi-time-point, multi-color data sets. Then, we discuss three key categories of image analysis tasks, namely segmentation, registration, and annotation. We demonstrate how to pipeline these visualization and analysis modules using examples of profiling the single-cell gene-expression of C. elegans and constructing a map of stereotyped neurite tracts in a fruit fly brain

Translational Selection Is Ubiquitous in Prokaryotes

Codon usage bias in prokaryotic genomes is largely a consequence of background substitution patterns in DNA, but highly expressed genes may show a preference towards codons that enable more efficient and/or accurate translation. We introduce a novel approach based on supervised machine learning that detects effects of translational selection on genes, while controlling for local variation in nucleotide substitution patterns represented as sequence composition of intergenic DNA. A cornerstone of our method is a Random Forest classifier that outperformed previous distance measure-based approaches, such as the codon adaptation index, in the task of discerning the (highly expressed) ribosomal protein genes by their codon frequencies. Unlike previous reports, we show evidence that translational selection in prokaryotes is practically universal: in 460 of 461 examined microbial genomes, we find that a subset of genes shows a higher codon usage similarity to the ribosomal proteins than would be expected from the local sequence composition. These genes constitute a substantial part of the genome—between 5% and 33%, depending on genome size—while also exhibiting higher experimentally measured mRNA abundances and tending toward codons that match tRNA anticodons by canonical base pairing. Certain gene functional categories are generally enriched with, or depleted of codon-optimized genes, the trends of enrichment/depletion being conserved between Archaea and Bacteria. Prominent exceptions from these trends might indicate genes with alternative physiological roles; we speculate on specific examples related to detoxication of oxygen radicals and ammonia and to possible misannotations of asparaginyl–tRNA synthetases. Since the presence of codon optimizations on genes is a valid proxy for expression levels in fully sequenced genomes, we provide an example of an “adaptome” by highlighting gene functions with expression levels elevated specifically in thermophilic Bacteria and Archaea

Building community capacity for end of life: an investigation of community capacity and its implications for health-promoting palliative care in the Australian Capital Territory

This study identified and examined community-based activities around death, dying and end-of-life care which might reflect a health-promoting palliative care (HPPC) philosophy. This approach is argued to restore community ownership of, and agency in, dying and death through the building of community capacity. However, the enactment of the HPPC approach has not been extensively examined in Australia. Current understandings of community capacity-building relating to end of life are orientated toward service provision. A qualitative interpretive approach was used to engage with local community groups in the Australian Capital Territory with an interest in death, dying and end-of-life care. Data were collected from ten in-depth, semi-structured interviews and thematically analysed. The themes of Practical Support, Respect and Responsiveness and Connection and Empowerment were identified, reflecting community activities initiated in response to the experience of life-limiting illness. Building community capacity offers to restore community agency in end-of-life concerns, while potentially enhancing health service provision through collaborative partnerships. This study indicates an existing community capacity, demonstrated by activities that promote socialisation, peer support and normalisation of death and dying. However, as these activities occur primarily in response to illness, proactive and preparatory interventions in HPPC are a priority

Heroic frames: discursive constructions around the requested death movement in Australia in the late-1990s

This paper focuses on a critical development in the life of the requested death movement [McInerney, F. (2000). "Requested Death": A new social movement. Social Science & Medicine, 50(1), 137-54.], that being the passage of the Northern Territory of Australia's Rights of the Terminally Ill (ROTI) Act 1995. This legislation, for the first time anywhere in the world, allowed for lawful euthanasia and physician-assisted suicide, thereby fulfilling key requirements of the movement. Taking a constructionist perspective, I analyzed discursive representations of dying, death and medicine in selected Australian print media during this time period (1995-1997). The media's predilection for reporting dramatic and unusual death coincided with the movement's construction of contemporary dying as horrific, intractable, and intolerable. Across all analyzed publications and genres, an heroic discourse was found to be a dominant influence, couched within a dramatic framing that served to reinforce many of the claims of the requested death movement. The framing of requested death activists as heroes, and of requested death itself as a redeeming and transforming act for those seeking it, were preeminent in press portrayals. The dominance of this heroic discourse suggests that such media and movement frames worked in tandem to both resonate with and reinforce popular Australian notions of terminal illness and dying in the late 20th century.Requested death movement Euthanasia Death and dying Media Australia

"Requested death": a new social movement

This paper addresses current developments in the right-to-die arena. While discussion of this area has tradionally been the province of disciplines other than sociology, including philosophy and bioethics, this paper offers an alternative framework from which to consider the progressive interest in control and choice at life's end which had developed this century, principally in the Western world. Taking a largely socio-historical approach, this paper argues that issues such as euthanasia and physician-assisted suicide can be seen as forming part of an international social movement, which is dubbed 'the requested death movement'. The paper traces the chronology of the movement, placing its framing activities, the emergence of individual activists and events and its progressive mobilization, within a consideration of so-called 'new' social movements, which have emerged since the 1960s. These are principally concerned with resisting state control of cultural matters, while reclaiming matters of identity, privacy and individual corporeality, which it is argued are at the core of the requested death movement. It is posited that this consideration can contribute to undestandings of both the contemporary social organization of death and dying, and social movement theory more generally.

Provision of food and fluids in terminal care: A sociological analysis

The artificial provision of nutrition and hydration to those with end-stage malignant disease is addressed. The physiology of cancer is investigated and is found to render such treatment futile in many instances. An analysis of the sociology of food, and the role of gender in its provision is discussed, and placed in the social milieu of the acute hospital, where there is to be found a cultural replication of the family. It is hypothesized that it is the synthesis of the powerful symbols of food and family that is at the root of behaviour in this area. Implications for patients and caregivers are explored.physiology of cancer sociology of food social/gender relations in hospital