May 12, 2014

Dementia : the international journal of social research and practice - March 2014

Full text articles are available to fee paying members of Alzheimer’s Australia NSW by emailing

A self narrative of life-long disability: A reflection on resilience and living with dementia
Illness such as dementia has particular linguistic and cognitive difficulties, not the least of which is its depiction in narrative, which may not be taken seriously. This paper builds upon a recently published manuscript by the authors, that describes a methodological approach utilising structural and thematic forms of narrative analysis to keep the person with dementia ‘centre stage’ in their own life story narrative. The aim of this paper is to utilise the same methodological approach and data to explore the narrative threads of a life-long disability, as experienced by a person called Janet who lives with dementia. Janet’s story locates disability not as personal impairment but within the social and cultural context of family and religious life. This contributes to a better understanding of resilience built up over time; in so doing, provides further insight into Janet’s enduring sense of self as she embraced a more challenging journey along the pathway of dementia.
p. 147-159 

Gaps and spaces: Representations of dementia in contemporary British poetry
This article considers the work of a number of contemporary British poets who have attempted to articulate some of the experiences that dementia entails. The unique potential of poetry as a means of portraying the dislocations and reinventions of self that dementia involves has been mostly overlooked. The insights offered by critical gerontology are central to this article. This perspective calls for critical thought about the ways in which dementia has been socially constructed. The challenges posed by poets such as Vuyelwa Carlin, Valerie Laws and Jo Shapcott in particular, are examined. The complex poetic representations offered by these poets acknowledge the pathological declines of dementia and simultaneously celebrate the individuality and life of their subjects. Considering dementia with reference to the work of contemporary poets and critical gerontology is one way in which we can deepen our understanding of what this illness involves and humanise those who suffer from it.
p. 160-175

Reminiscence in dementia: A concept analysis
This paper is a report of an analysis of the concept of reminiscence in dementia and highlights its uses as a therapeutic intervention used on individuals with dementia. No single definition of reminiscence exists in healthcare literature; however, definitions offered have similar components. The term life review is commonly used when discussing reminiscence; however, both terms are quite different in their goals, theory base and content. This concept analysis identified reminiscence as a process which occurs in stages, involving the recalling of early life events and interaction between individuals. The antecedents of reminiscence are age, life transitions, attention span, ability to recall, ability to vocalise and stressful situations. Reminiscence can lead to positive mental health, enhanced self esteem and improved communication skills. It also facilitates preparation for death, increases interaction between people, prepares for the future and evaluates a past life. Reminiscence therapy is used extensively in dementia care and evidence shows when used effectively it helps individuals retain a sense of self worth, identity and individuality.
p. 176-192 

Young onset dementia: The impact of emergent age-based factors upon personhood
This paper evaluates how emergent age-based factors may impact upon the experience of dementia. A review of selected literature is undertaken to explore how personhood has been conceptualised in relation to dementia. It is then highlighted that very little literature explicitly addresses personhood with reference to young onset dementia. Young onset dementia is defined, and evaluation is then undertaken of the distinctive age-based factors that might shape the experience of the condition. It is noted that whilst there are separate literatures on both personhood and young onset dementia, there appears to be little endeavour to draw these two strands of thought together. The distinctive factors that shape young onset dementia suggest that a more heterogeneous perspective should be developed that accounts more appropriately for how personal characteristics shape the lived experience of dementia. The paper concludes that further research should be undertaken that has an explicit focus on personhood and young onset dementia.
p. 193-206 

Psychological effects of poetry workshops with people with early stage dementia: An exploratory study
Objective: The aim of this study was to test the effectiveness of writing poetry on psychological functioning in people with early stage dementia.
Method: A series of poetry writing workshops was conducted with four women, at the end of which a one-on-one short structured interview was conducted.
Results: All of the women said that they benefited from the workshops, but their experiences differed greatly. Themes included competence and self-efficacy, personal growth, wanting to contribute and poetry writing as a way of coping with the progression of the condition.
Conclusion: Creative activities such as writing poetry hold promise for enhancing the quality of life of people with dementia.
p. 207-215 

Electronic tracking for people with dementia: An exploratory study of the ethical issues experienced by carers in making decisions about usage
Electronic tracking through GPS (global positioning system) is being used to monitor and locate people with dementia who are vulnerable to becoming lost. Through a review of the literature and an original study, this article examined ethical issues associated with use in a domestic setting. The qualitative study consisted of in-depth interviews with 10 carers who were using electronic tracking. The study explored the values, beliefs and contextual factors that motivated carers to use electronic tracking. It examined the extent of involvement of the person with dementia in decision-making and it explored the various ethical dilemmas encountered by carers when introducing the tracking system. As an issue that emerged from the interviews, specific attention was paid to exploring covert usage. From the study findings, recommendations have been made for research and practice about the use of electronic tracking in dementia care.
p. 216-232 

Dementia diagnosis and post-diagnostic support in Scottish rural communities: Experiences of people with dementia and their families
This paper explores the reported difficulties and satisfactions with diagnostic processes and post-diagnostic support offered to people with dementia and their families living in the largest remote and rural region in Scotland. A consultation with 18 participants, six people with dementia and 12 family members, was held using semi-structured interviews between September and November 2010. Three points in the diagnostic process were explored: events and experiences pre-diagnosis; the experience of the diagnostic process; and post-diagnostic support. Experiences of people with dementia and their carers varied at all three points in the diagnostic process. Participant experiences in this study suggest greater efforts are required to meet Government diagnosis targets and that post-diagnostic support needs to be developed and monitored to ensure that once a diagnosis is given people are well-supported. Without post-diagnostic provision Government targets for diagnosis are just that, quota targets, rather than a means to improve service experiences.
p. 233-247 

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.
p. 248-256 

But does it do any good? Measuring the impact of music therapy on people with advanced dementia: (Innovative practice)
This article describes the impact of music therapy upon a group of nine people with advanced dementia in a hospital setting. It demonstrates how the impact of music therapy was measured using the case notes completed by nursing and care staff and how these notes suggested that music therapy had a positive effect on the mood and behaviour on eight of the nine people receiving music therapy
p. 258-264 

Comparison of iPad applications with traditional activities using person-centred care approach: Impact on well-being for persons with dementia
Professionals working with people with dementia need to develop new activities that occupy patients and increase positive emotions. Dementia care mapping is a reliable method of measuring well-being during activities with people with dementia. The iPad has many applications that may be suitable as a group activity for persons with dementia. Six people with dementia took part in two traditional and two iPad activities over two days. Well-being was recorded using dementia care mapping. Subjects displayed similar or better levels of well-being during iPad activities than traditional activities. A larger variation of behaviors was seen during iPad activities than traditional activities. With detailed planning using a person-centred care approach, iPad group activity has the potential to be as effective and engaging as other conventional activities in achieving well-being.
p. 265-273 

Effects of using nursing home residents to serve as group activity leaders: Lessons learned from the RAP project
Previous research has demonstrated that persons with early to moderate stage dementia are capable of leading small group activities for persons with more advanced dementia. In this study, we built upon this previous work by training residents in long-term care facilities to fill the role of group activity leaders using a Resident-Assisted Programming (RAP) training regimen. There were two stages to the program. In the first stage, RAP training was provided by researchers. In the second stage, RAP training was provided to residents by activities staff members of long-term care facilities who had been trained by researchers. We examine the effects of RAP implemented by researchers and by activities staff member on long-term care resident with dementia who took part in these RAP activities. We also examined effects produced by two types of small group activities: two Montessori-based activities and an activity which focuses on persons with more advanced dementia, based on the work of Jitka Zgola. Results demonstrate that levels of positive engagement seen in players during RAP (resident-led activities) were typically higher than those observed during standard activities programming led by site staff. In general, Montessori-Based Dementia Programming® produced more constructive engagement than Zgola-based programming (ZBP), though ZBP did increase a positive form of engagement involving observing activities with interest. In addition, RAP implemented by activities staff members produced effects that were, on the whole, similar to those produced when RAP was implemented by researchers. Implications of these findings for providing meaningful social roles for persons with dementia residing in long-term care, and suggestions for further research in this area, are discussed.
P 274-285 

Book review -  Counseling people with early-stage Alzheimer’s disease: A powerful process of transformation by Robyn Yale

…..There is profound learning held and shared through this one text, weaving together evidence from case studies with very practical tools and strategies that allow the Framework to be used to address emotional adjustment, practical coping skills and the adapting to change around lifestyle issues. Supporting strong emotional coping strategies for a person with dementia is an essential yet much neglected aspect of policy and practice for people with dementia. This text will reach many audiences, those skilled in counselling
who can now adapt their practice to meet the needs of people with early dementia and their families, and certainly anyone in a position to influence how we improve the current experience of people with dementia following a diagnosis. This text is fundamental reading if we are to ensure that our response to dementia is a positive, transformative one!
Heather Wilkinson
University of Edinburgh, Professor of Dementia Partnership and Practice, Centre for Research on Families and Relationships, School of Health in Social Science, UK
Email the library at to reserve this book


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