April 12, 2016

dementia : The international journal of social research and practice,

Full text articles and books are available to fee paying members of Alzheimer’s Australia NSW by emailing NSW.Library@alzheimers.org.au
Volume 15, Number 2, March 2016


What are the experiences of people with dementia in employment?

Chaplin, R., & Davidson, I. (pp. 147-161).


Statistics show that an increase in the statutory retirement age in the UK will mean that many more people will develop a dementia while still in employment. A review of the literature confirmed that there are no existing studies in the UK which examine this issue in any detail. The aim of this study was to investigate the experiences of people who develop a dementia while still in employment and to understand how they make sense of these experiences; therefore a qualitative explorative inquiry based on an Interpretive Phenomenological Analysis methodology was used. Interviews with five people who had developed a dementia while still in employment were carried out, with ages ranging from 58 to 74 years. Interview transcripts were analysed and four super-ordinate themes were identified: the realization that something is wrong; managing the situation in the workplace; trying to make sense of change; and coming to terms with retirement or unemployment. The results showed that people who develop a dementia while still in employment do not always receive the ‘reasonable adjustments’ in the workplace to which they are entitled under the Equality Act (2010). Some of the participants felt that they were poorly treated by their workplace and described some distressing experiences. The study highlights the need for more effective specialized advice and support regarding employment issues and more research into the numbers of people in the UK that are affected by this issue.


Facilitating independence: The benefits of a post-diagnostic support project for people with dementia

Kelly, F., & Innes, A. (pp. 162-180).


Providing support in the form of information, advice and access to services or social events is promoted as beneficial for people newly diagnosed with dementia and their families. This paper reports on key findings from an evaluation of a post-diagnostic support pilot project in Scotland addressing local service gaps, namely information provision, emotional and practical support and maintaining community links. Twenty-seven participants (14 people newly diagnosed with dementia and 13 family carers) were interviewed at two time points: T1 shortly after joining the pilot project and T2 approximately six months later, to ascertain their views on existing services and the support offered by the pilot project. A comparative thematic analysis revealed that the project facilitated increased independence (associated with increased motivation and self-confidence) of people with dementia. The project illustrates what can be achieved if resources are targeted at providing individualised post-diagnostic support, particularly where there are service delivery gaps.


The paradox of dementia: Changes in assimilation after receiving a diagnosis of dementia

Lishman et al., (pp. 181-203).


This qualitative study used semi-structured interviews to explore how six people talked about their difficulties before and after a dementia diagnosis. Participants’ accounts of their memory problems were analysed in terms of the verbal Markers of Assimilation of Problematic Voices Scale. This analysis indicated that after diagnosis some participants were able to integrate aspects of their illness that had previously been too painful, and which had been warded off. The process by which individuals were able to integrate a dementia diagnosis into their sense of self-involved stepping in and out of awareness, with both acceptance and denial featuring in their accounts as they approached and then retreated from addressing the diagnosis. In contrast, other participants resisted moving towards explicitly acknowledging their dementia but were instead able to express concerns about what this movement would entail, for instance voicing their fears that it would mean that they had surrendered. Social support seems to have been crucial in enabling participants to sustain a positive sense of self in the face of this adjustment.


Structured interviews examining the burden, coping, self-efficacy, and quality of life among family caregivers of persons with dementia in Singapore

Tay et al., (pp. 204-220).


Dementia is a global health issue and the effects on caregivers are substantial. The study aimed to examine the associations of burden, coping, self-efficacy with quality of life among family caregivers of persons with dementia in Singapore. Structured interviews were conducted in a convenience sample of 84 family caregivers caring and seeking clinical care for the persons with dementia in an outpatient clinic of a public hospital in Singapore. The outcome measures included the Family Burden Interview Schedule, Family Crisis Oriented Personal Evaluation Scale, General Perceived Self-Efficacy Scale, and World Health Organization Quality of Life Scale – Brief Version. In general, significant correlations were observed between the quality of life scores with coping strategy and family burden scores, but not between the coping strategy and family burden scores. Compared to demographic factors such as caregiver age and household income, psychosocial factors including family burden, coping strategies, and self-efficacy demonstrated greater association with quality of life in the participants. However, the dynamics of these associations will change with an increasing population of persons with dementia, decreasing nuclear family size, and predicted changes in family living arrangements for the persons with dementia in future. As such, it necessitates continuous study examining the needs and concerns of family caregivers and the relevance of ongoing interventions specific to caregivers of persons with dementia.


Caring for older people living alone with dementia: Healthcare professionals’ experiences

de Witt et al., (pp. 221-238).


Older adults living alone with dementia are at greater risk of placement in long-term care homes compared with those living with others. Healthcare professionals have vital roles in supporting them to continue living in the community. Yet, little is known about how healthcare professionals fulfill these roles and what their experiences are like. The study purpose was to describe health care professionals’ experiences of caring for older people with dementia living alone. Using a qualitative descriptive approach and qualitative content analysis method, 15 healthcare professionals were interviewed in Ontario, Canada. The overall theme of the findings, doing the best we can for them, involved discussing sensitive care issues with what professionals viewed as gentle realism. Walking the tightrope expressed tensions in meeting professional responsibilities. Constraints (my hands are tied) and boundaries (it’s not my job, it’s not my decision) described perceived limitations on professional roles. Effects of the emotional struggle involved in working with these older people were lessened by believing I did the right thing. The findings have implications for what we could do better for older people with dementia living alone, through integration of person-centered/relationship-centered principles in education programs, community agency policies, a national dementia care strategy, and culture change in community care.


A methodological critique of the National Institute of Aging and Alzheimer’s Association Guidelines for Alzheimer’s disease, dementia, and mild cognitive impairments

Garrett, M. D., & Valle, R. (pp. 239-254).


In 2011, the U.S. National Institute on Aging published guidelines for clinical diagnostics for Alzheimer’s disease dementia. These guidelines define a continuum with three stages—an early, pre-clinical stage with no symptoms, followed by mild cognitive impairment, and a final stage of Alzheimer’s disease dementia. This methodological critique examines the validity of this continuum. No studies exist showing the progression of these biomarkers to Alzheimer’s disease. There is also a lack of empirical evidence showing how biomarkers determine mild cognitive impairment, which has multiple etiologies. The guidelines fail to explain anomalies where there are biomarkers but no expression of Alzheimer’s disease.


Book Reviews

    if you would like to reserve these books  please email the Library nsw.library@alzheimers.org.au               
  • Engaging and communicating with people who have dementia: Finding and using their strengths Eileen Eisner,  
    The core basis for the approach outlined in this book stems from Gardner’s
    (1983) theory of multiple intelligences. Eisner clearly outlines this theory and explores how this can be applied to individuals living with dementia in order to emphasise their strengths in particular areas of intelligence. The varying intelligence types are presented clearly with a list of associated strengths and how to recognise where an individual possesses skills in a particular intelligence.
    Eisner focuses on the benefits and positive outcomes of a strength-based approach,
    emphasising the skills and competencies that an individual still possesses rather than
    highlighting the abilities that they have lost. The aim of a strength-based approach is to
    maintain a high quality of life for an individual for as long as possible, by encouraging
    socialisation, stimulating recall and sustaining the individual’s interest in life.


Facilitating spiritual reminiscence for people with dementia

Elizabeth MacKinlay and Corinne Trevitt,                           

The authors begin by positioning themselves firmly in the positive dementia care camp, putting the person before the dementia, and operating groups which are inclusive and respectful, emphasising remaining strengths, promoting engagement and facilitating communication. They clearly have an understanding of the value of reminiscence and cite the usual sources to indicate how it is a natural part of the ageing process and a ‘positive activity with educational, recreational, social and therapeutic benefits’ . They also attempt to explain their concept of spirituality as addressing the
core or ultimate meaning of life, covering relationships, creation/environment, religion, and the Arts. This definition of spirituality, even with accompanying diagrams, is far from clear and appears to accommodate almost every kind of reflection whether as retrospective or as experienced in the present. My understanding is that they see the four aspects of spirituality as different routes to spiritual experience and addressing the big questions in life concerning hope, fear, sorrow, religious faith and the meaning of human existence....

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