August 23, 2017

Dementia – The international journal of social research and practice -

Table of Contents

Volume 16, Issue 4, May 2017

Dementia discourse – A rethink?
Susan Sontag (1991) wrote that ‘the most terrifying illnesses are those perceived not just as lethal but as dehumanising, literally so’ (p. 124). In her study of TB, cancer and AIDS, Sontag explored the social and moral discourses used to depict such diseases, and the way these often reflected the stigma experienced by individuals so diagnosed. As mortal conditions and in various ways, TB captured this discursive imagination throughout the 18th and 19th centuries, and cancer and AIDS bookended the 20th. While sadly Sontag died in 2004 and cannot illuminate our contemporary understandings of dementia, I fancy that in many respects, dementia has arguably assumed the mantel of being the focus of such public discourse in the 21st century, and we are wise to be alert to the implications of this status.
A few years back, I sat on a conference podium with a colleague who spoke passionately about the ‘dementia tsunami’ that was fast threatening to inundate health and social care. The speech was a ‘call to arms’ of sorts; designed to raise awareness and mobilise resources to assist people living with this condition. Nonetheless, I felt uneasy at the ‘tsunami’ depiction, and voiced my concern at describing people with dementia as a natural disaster. My colleague and I discussed our differences afterwards, and while I had sympathy with their desire to construct a ‘burning platform’ that mandated action, I remained opposed to the depiction. I still see it in contemporary use from time to time, often in conjunction with the adjectives ‘grey’ or ‘silver’, and my objections persist….
Fran McInerney pp. 409–412

Factors determining eligibility and access to subacute rehabilitation for elderly people with dementia and hip fracture
With hip fracture and dementia increasing in incidence in the global ageing population, there is a need for the development of specific procedures targeting optimal treatment outcomes for these patients. This paper looks primarily at the factors that limit access to subacute rehabilitation services as a growing body of evidence suggests that access to timely inpatient rehabilitation increases functional outcomes for patients both with dementia and without. … Barriers to access discussed in the literature include information management, management of comorbidities, attitudes, resource availability, and the quality of evidence and education. By identifying these factors we can identify strategic points of intervention across the trajectory of prevention, treatment and rehabilitation that may improve outcomes for this growing group of vulnerable patients. Emerging best practice for these patients is also discussed.
 Rosemary A McFarlane ; pp. 413–423

Using simple technology to prompt multistep tasks in the home for people with dementia: An exploratory study comparing prompting formats
Hazel C Boyd
To investigate the relative effectiveness of different prompts for people with dementia during multistep tasks in the home, to inform prompting technology design.
… The participants with mild to moderate dementia (5M/4F, aged 73–86 years) functioned at the Planned or Exploratory levels of the Pool Activity Level instrument. A touchscreen computer displayed different prompts during two set tasks: “card-and-envelope” and “CD player.” The trials were scored to establish the relative effectiveness of the prompts. Individual tasks were also explored.

(The Pool Activity Level (PAL) Instrument for occupational profiling : a practical resource for carers of people with cognitive impairment

The Pool Activity Level (PAL) Instrument has become the framework for activity-based care systems in a variety of health and social care settings for people with cognitive impairments. The Instrument is recommended for daily living skills training and activity planning in the National Institute for Health and Clinical Excellence Clinical Guideline for Dementia (NICE, 2006). The PAL checklist has also been proved valid and reliable by a recent research study. Following these endorsements, Jackie Pool has developed valuable new material for this third edition.
The book continues to include the Instrument itself and the photocopiable activity checklists and plans that help to match users' abilities with activities. An additional second section provides a selection of potential activities together with sources for obtaining them. The author includes guidance for carrying out these activities with individuals of different ability levels as revealed by the PAL Instrument Checklist. 
 *These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on

Text and audio prompts were each more effective than video or picture prompts for a card-and-envelope task, but this was not seen in a CD player task. The differences may be related to the type of actions within the tasks; the card-and-envelope actions were easier to convey verbally; the CD player actions lent themselves to visual prompts.
Designers of technology-based prompts for people with dementia should consider that the effectiveness of different prompts is likely to be task dependent. Familiar, unambiguous language can increase the success of tailored prompts. There are significant practical challenges associated with choosing and deconstructing everyday tasks at home.
pp. 424–442)

Markers of assimilation of problematic experiences in dementia within the LivDem project
Richard Cheston
This study aimed to determine whether the Markers of Assimilation of Problematic Experiences in Dementia scale (MAPED) can be used to identify whether the way in which participants talk about dementia changed during the group. All eight sessions of a LivDem group, which were attended by participants were recorded and transcribed. An initial analysis identified 160 extracts, which were then rated using the MAPED system. Inter-rater reliability was 61% and following a resolution meeting, 35 extracts were discarded, leaving 125 extracts with an agreed marker code. All of the participants were identified as producing a speech marker relating to dementia, and these varied between 0 (warding off) to 6 (problem solution). Examples of these markers are provided. The proportion of emergence markers (indicating the initial stages of assimilation) compared to later markers changed significantly between the first four sessions and the final sessions. This difference was still significant even when the markers produced by the most verbal participant, Graham, were excluded. The use of process measures within psychotherapy complements more conventional outcome measures and has both theoretical and clinical implications
pp. 443–460

What do people with dementia and their carers want to know about neuroimaging for dementia?
Hannah Featherstone
Neuroimaging forms an important part of dementia diagnosis. Provision of information on neuroimaging to people with dementia and their carers may aid understanding of the pathological, physiological and psychosocial changes of the disease, and increase understanding of symptoms. This qualitative study aimed to investigate participants’ knowledge of the dementia diagnosis pathway, their understanding of neuroimaging and its use in diagnosis, and to determine content requirements for a website providing neuroimaging information. Structured interviews and a focus group were conducted with carers and people with dementia. The findings demonstrate an unmet need for information on neuroimaging both before and after the examination. Carers were keen to know about neuroimaging at a practical and technical level to help avoid diagnosis denial. People with dementia requested greater information, but with a caveat to avoid overwhelming detail, and were less likely to favour an Internet resource.
pp. 461–470

Risks in situations that are experienced as unfamiliar and confusing – the perspective of persons with dementia
 Linda Sandberg
An increasing number of people with dementia are ageing at home in Sweden and in other countries. In order to meet the safety requirements, knowledge about how persons with dementia experience risks is required. The aim of the study was to explore and better understand how persons with dementia, living at home, experience risks in their daily life and how they handle these situations. Twelve persons with dementia were interviewed using open-ended questions, and the data were analyzed using a content analysis approach. Findings showed that participants experienced situations fraught with risks in their daily life as unfamiliar and confusing. Previously familiar places became unfamiliar to them, and details did not come together. They were uncertain about what actually had happened. How the participants handled these situations in order to reduce the risks are described.
pp. 471–485

Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature
Esther-Ruth Beck
This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.
; pp. 486–512

Perceptions of a cognitive rehabilitation group by older people living with cognitive impairment and their caregivers: A qualitative interview study

Isabelle Moebs
Cognitive rehabilitation has been developed to improve quality of life, activities of daily living and mood for people with cognitive impairment, but the voice of people with cognitive impairment has been underrepresented. This study aimed to understand the experience of people living with cognitive impairment, as well as their caregivers who took part in a cognitive rehabilitation intervention programme.
Twelve individuals with cognitive impairment and 15 caregivers participated in individual qualitative interviews. The interview data were analysed in three steps: 1) familiarisation of the transcripts; 2) identification of themes; 3) re-interpretation, refinement and integration of themes with methodological auditors. Both participants living with cognitive impairment and caregivers valued the comfortable environment with friendly, caring and supportive group leaders who taught practical tips and strategies. The participants living with cognitive impairment enjoyed socialising with like others. Caregivers benefited from learning about memory problems and sharing their challenges with other caregivers. The participants living with cognitive impairment emphasised the benefits of relational and practical aspects, whereas the caregivers valued the informational and emotional support. In conclusion, both participants living with cognitive impairment and caregivers found the cognitive rehabilitation group useful.
pp. 513–522

Micro-skills of group formulations in care settings: Working with expressions of staff distress
Louisa Jackman
The help of specialist clinicians is often sought to advise staff in residential and nursing care homes about how to work with people with dementia whose behaviour is challenging. The Newcastle Model (James, 2011) is a framework and a process developed to help care staff understand and improve their care of this group. The model emphasises the use of sharing information with staff to develop effective care plans. In the Shared Formulation Sessions characteristic of the Newcastle Model, clinicians take the role of a group facilitator, helping the staff reach a consensus about what needs to change. These sessions can be difficult to manage as intra and inter-group processes emerge and the group express their anxieties. This paper aims to explore the processes that might be in play Shared Formulation Sessions and to suggest ways in which the facilitator might approach this to manage effective collaborative working.
; pp. 523–536

Book Reviews

John Swinton,

Dementia: living in the memories of god
Jessica M Keady
The intention of this book is to provide a practical and theological re-orientation around the discourse of dementia. There are 10 chapters in this book, which include ‘A Practical Theology of Dementia,’ ‘The Problem with Personhood,’ and ‘Hospitality among Strangers: Christian Communities as Places of Belonging.’ This book was awarded the 2016 Michael Ramsey Prize for theological writing with the Archbishop of Canterbury, Justin Welby, calling it a cross disciplinary book that goes straight to the heart of teaching one of the most profound failures of our society – the failure to value people in other than economic terms and to see the dignity of the human person.
There is, as to be expected, a theological tone throughout the book but as well as the use of biblical quotes, philosophical and social-scientific theorists and ideas are also used to enhance particular points of emphasis. For example, Swinton critiques the use of Buber’s I-Thou/I-It distinction of personhood and relationships on the purely ethical level arguing that “this approach actually ends up leaving people with dementia in a vulnerable position” (p. 149).
John Swinton has produced a well-argued, theological and social scientifically referenced and reasoned book that is successful in its aim of moving beyond current tendencies to “perceive the subjective, self-aware, cognitive self as the necessary qualification for humanness and theological construction” (p. 15). Throughout the book, it is clear that Swinton is intending to open up the possibility that “knowing about God may not be as important as knowing God,” which, he argues, involves much more than memory, intellect and cognition.
I especially like Swinton’s use of embodied language throughout the book, which includes discussions on the embodied soul, personhood and humanness, identity and bodily memory, and our bodies as holy ground. A critique of the book could be that the content may not suit every potential reader, as there is an undeniable theological undertone throughout the monograph. That being said, the ideas that are discussed including, for example, problematizing the term personhood, discussing the importance of embodied practice, memory and embrace, and hospitality, can be read and related to from a non-faith perspective.
This book is successful in developing a practical theology of dementia that can be used and read by caregivers, people with dementia, ministers, hospital chaplain and medical practitioners. I also think that this is a book that would make an excellent contribution on Master’s courses in theology and be of value to any questioning practitioner, commentator or student, who is attempting to understand the position of dementia in contemporary society from a Christian and/or theological perspective.
; pp. 537–538

Murna Downs and Barbara Bowers (eds), Excellence in dementia care: Research into practice,
Simon Burrow
The first edition of this excellent collection of essays on dementia care was published in 2008. It became a core text on reading lists on dementia studies courses and was a “must-read” for those involved in the care and support of people living with dementia. The strengths of the book resided in the quality and breadth of contributions and its direct connection with care practice. It was also an effective introduction to the work of many key experts in the field, and wet the appetite to explore their other works. The second edition has been eagerly anticipated.
There have been seismic shifts in world of dementia since the original publication. These are highlighted in the introduction to this second edition: the political commitment to dementia, which has taken place on a global scale; the rise in the public prominence of people living with dementia and the belated recognition of the diversity of the experience of people living with dementia. The second edition sets aims for these to form the key contexts for the book. It succeeds in this aim and does so whilst retaining the person-centered ethos that was a strength of the first edition.
The tone is set in this edition from the outset with a preface by Daphne Wallace and Barbara Woodward-Carlton who are able to offer their perspectives of living with dementia and caring for a close relative with dementia, respectively. The first edition consisted of 28 chapters from renowned experts, several do not make the second edition but nine new chapters are added. The second edition now comprises of 30 chapters themed around: the context of dementia care; conceptualizing dementia care; best practice dementia care for the person; care pathways and finally, making sustainable change happen in dementia care (changing the culture of care).
The changes made to existing chapters and the new chapters effectively bring the book up to date and re-establish this as the key text for all those interested in supporting, empowering and enabling people who are living with dementia. I was particularly pleased to see new contributions by the likes of Pia Kontos on selfhood and the body, Hannah Zeilig on representations of dementia in the media, and – focusing on recent developments – there is an interesting chapter on dementia-friendly communities by Cathy Henwood and Murna Downs.
The title Excellence in Dementia Care is perhaps a little misleading. Care practice remains central, but the new chapters and re-focusing of the book quite rightly address issues that go beyond “care” and explore broader concerns such as empowerment, public health, representations of dementia, arts and communities.
The changes to this key text not only make this a must-read for all those who have an interest in enabling, supporting and caring for people living with dementia and who are unfamiliar with the first edition; but arguably, also for those who already possess the first edition.

; pp. 538–539

 *These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on

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