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Experiences of Family Relationships When a Family Member Has Dementia  [PDF]
Annika Kj?llman Alm, Ove Hellzen, Karl-Gustaf Norbergh
Open Journal of Nursing (OJN) , 2014, DOI: 10.4236/ojn.2014.47055

Approximately 66 million people worldwide will suffer from dementia in 2030. The dementia’s impact affects people with the disorder and those in their social networks, most notably, their families. This study’s aim was to explore the experiences of family relationships when a family member has dementia. We conducted semi-structured interviews with people diagnosed with dementia, their spouses and adult children. Seventeen participants were interviewed. All participants were recruited in open-ended ongoing structured support groups provided by a Swedish municipality in order to elicit the participants’ subjective experiences on family relationships after the dementia diagnosis. Researchers used content analysis to examine the transcripts. Two main themes were identified, one relating to changed relationships where the participants experienced longing, lost closeness, loneliness and changed sibling relationships. The second theme related to supporting relationships within the family with experiences such as kinship, shared responsibilities and love and appreciation. Support should therefore focus on creating relationships and giving opportunities for conversations about changes within the families and difficult decisions, creating family or team support for those who need it.

Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies  [PDF]
Frances Bunn ,Claire Goodman,Katie Sworn,Greta Rait,Carol Brayne,Louise Robinson,Elaine McNeilly,Steve Iliffe
PLOS Medicine , 2012, DOI: 10.1371/journal.pmed.1001331
Abstract: Background Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice. Methods and Findings We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis. Conclusions There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis. Please see later in the article for the Editors' Summary.
Current experiences and educational preferences of general practitioners and staff caring for people with dementia living in residential facilities
Christopher Beer, Barbara Horner, Osvaldo P Almeida, Samuel Scherer, Nicola T Lautenschlager, Nick Bretland, Penelope Flett, Frank Schaper, Leon Flicker
BMC Geriatrics , 2009, DOI: 10.1186/1471-2318-9-36
Abstract: A mixed methods study design was utilised. A survey was distributed to a convenience sample of general practitioners, and staff in 223 consecutive residential care facilities in Perth, Western Australia. Responses were received from 102 RCF staff working in 10 facilities (out of 33 facilities who agreed to distribute the survey) and 202 GPs (19% of metropolitan GPs). Quantitative survey data were summarised descriptively and chi squared statistics were used to analyse the distribution of categorical variables. Qualitative data were collected from general practitioners, staff in residential care facilities and family carers of people with dementia utilizing individual interviews, surveys and focus groups. Qualitative data were analysed thematically.Among RCF staff and GPs attending RCF, participation in dementia education was high, and knowledge levels generally perceived as good. The individual experiences and needs of people with dementia and their families were emphasised. Participants identified the need for a person centred philosophy to underpin educational interventions. Limited time was a frequently mentioned barrier, especially in relation to attending dementia care education. Perceived educational needs relating to behaviours of concern, communication, knowledge regarding dementia, aspects of person centred care, system factors and the multidisciplinary team were consistently and frequently cited. Small group education which is flexible, individualized, practical and case based was sought.The effectiveness and sustainability of an educational intervention based on these findings needs to be tested. In addition, future interventions should focus on supporting cultural change to facilitate sustainable improvements in care.Dementia is estimated to affect 0.9% of Australians and is now the leading cause of non-fatal disease burden among older Australians. [1,2] Prevalence is strongly age-related, with estimated prevalence rates of 6.5% in people aged 65 years a
Affect Consciousness and Adult Attachment  [PDF]
B?rje Lech, Gerhard Andersson, Rolf Holmqvist
Psychology (PSYCH) , 2012, DOI: 10.4236/psych.2012.39102
Abstract: The concept of affect consciousness refers to the ability to perceive, reflect upon, express and respond to one’s own or other individuals’ affective experiences. The aim of this study was to investigate how affect consciousness and adult attachment are related. Three clinical groups (eating disorders, relational problems, and stress-related problems), and one non-clinical group (total N = 82) completed the Attachment Style Questionnaire and were interviewed using the Affect Consciousness Interview—Self/Other. Results showed associations between high affect consciousness and secure attachment, and between low affect consciousness and insecure attachment. Moreover, attachment style was predicted by consciousness about others’ and own affects in general, and specifically by consciousness about others’ anger and guilt, and by own joy. Affect consciousness as a potential dimension or moderator of attachment merits further investigation.
Relatives’ experiences of everyday life when receiving day care services for persons with dementia living at home  [PDF]
Gunn Eva Solum Myren, Ingela Enmarker, Ellen Saur, Ove Hellzen
Health (Health) , 2013, DOI: 10.4236/health.2013.58166

Relatives often become involved in the care of people with dementia who are living at home. The caregivers’ burdens are extensively described in several studies, and one of the most common, unmet needs of the caregivers is the opportunity for daytime activities. The aim in this qualitative study is therefore to explore the everyday lives of eight relatives of people with dementia who are receiving day care services. A content analysis is used, and three major themes emerge and are discussed: 1) when life becomes chaotic; 2) rebuilding a new, everyday life; and 3) the agonies of choice. The findings indicate that day care service offers respite care, and, at the same time, it gives both the relatives and those with dementia a meaningful day. These findings can also be described as relatives traveling a route from a situation characterized by chaos and suffering to a new life situation that has meaning through day care services. It is important to note that despite this new meaning in the relatives’ lives, the relatives continue to struggle with decisions about the futures of their loves ones in regard to the dilemma of placing them in an institution versus aging in place.

The Sources of Higher States of Consciousness  [PDF]
Steve Taylor
International Journal of Transpersonal Studies , 2005,
Abstract: In this paper, it is argued that “higher states of consciousness”–or mystical experiences–have two main sources: they can be caused by a disruption of the normal homeostasis of the human organismand also by an intensification of the “consciousness-energy” that constitutes our being. (These are termed HD and ICE states). The author investigates examples of both types of experience,and compares and contrasts them. It is concluded that the second type of experience is the only one which is truly positive and which can become a fully integrated and permanent higher state of consciousness.
On the evolution of phenomenal consciousness  [PDF]
Jean-Louis Dessalles,Tiziana Zalla
Quantitative Biology , 2011,
Abstract: A number of concepts are included in the term 'consciousness'. We choose to concentrate here on phenomenal consciousness, the process through which we are able to experience aspects of our environment or of our physical state. We probably share this aspect of consciousness with many animals which, like us, feel pain or pleasure and experience colours, sounds, flavours, etc. Since phenomenal consciousness is a feature of some living species, we should be able to account for it in terms of natural selection. Does it have an adaptive function, or is it an epiphenomenon ? We shall give arguments to reject the second alternative. We propose that phenomenal properties of consciousness are involved in a labelling process that allows us to discriminate and to evaluate mental representations. We also discuss to what extent consciousness as such has been selected for this labelling function.
An information integration theory of consciousness
Giulio Tononi
BMC Neuroscience , 2004, DOI: 10.1186/1471-2202-5-42
Abstract: This paper presents a theory about what consciousness is and how it can be measured. According to the theory, consciousness corresponds to the capacity of a system to integrate information. This claim is motivated by two key phenomenological properties of consciousness: differentiation – the availability of a very large number of conscious experiences; and integration – the unity of each such experience. The theory states that the quantity of consciousness available to a system can be measured as the Φ value of a complex of elements. Φ is the amount of causally effective information that can be integrated across the informational weakest link of a subset of elements. A complex is a subset of elements with Φ>0 that is not part of a subset of higher Φ. The theory also claims that the quality of consciousness is determined by the informational relationships among the elements of a complex, which are specified by the values of effective information among them. Finally, each particular conscious experience is specified by the value, at any given time, of the variables mediating informational interactions among the elements of a complex.The information integration theory accounts, in a principled manner, for several neurobiological observations concerning consciousness. As shown here, these include the association of consciousness with certain neural systems rather than with others; the fact that neural processes underlying consciousness can influence or be influenced by neural processes that remain unconscious; the reduction of consciousness during dreamless sleep and generalized seizures; and the time requirements on neural interactions that support consciousness.The theory entails that consciousness is a fundamental quantity, that it is graded, that it is present in infants and animals, and that it should be possible to build conscious artifacts.Consciousness is everything we experience. Think of it as what abandons us every night when we fall into dreamless sleep and
The signature of the city: abandonment and dreaming in colonial Williamsburg and Ottawa
Kristmanson, Mark;
História (S?o Paulo) , 2011, DOI: 10.1590/S0101-90742011000100011
Abstract: exploring the themes of abandonment and dreaming in relation to two north american capital cities, this interdisciplinary narrative essay examines the canadian prime minister william lyon mackenzie king's influence on the planning and architecture of ottawa in relation to his frequent visits to colonial williamsburg, the restored former capital of virginia. at the invitation of john d. rockefeller jr., king became a regular guest in williamsburg during the 1930s and 1940s culminating in the conferral of an honorary degree by the college of william and mary in 1948. the records of these visits provide a diagnostic used to conceptualize the 'signature' of the capital city. in abandonment and in dreaming, capital cities are especially exposed to latent forces of nature and of 'museumification'. these two forces created a tension that complicated attempts by king and rockefeller to leave permanent architectural legacies in the signatures of their respective capitals.
Intrinsic Awareness, the Fundamental State of Consciousness  [PDF]
Weili Luo
Physics , 2011,
Abstract: In an effort to simplify the complexity in the studies of consciousness, the author suggests to divide the conscious experiences into a fundamental state, the intrinsic awareness (IA), and functions of this fundamental state. IA does not depend on external environment, our sense organs, and our cognitions. This ground state of consciousness is timeless and irreducible to sub-constituents; therefore reductionism can apply neither to the analysis nor to the new theory of IA. The methodology for investigating IA is proposed and the relation between IA and the hard problem in consciousness proposed by Chalmers is discussed.
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