May 18, 2017

The latest journal Dementia – The international journal of social research and practice - for health care professionals

Volume 16, Issue 2, February 2017
Full text articles and books are available to members of Alzheimer’s Australia NSW by emailing

Topics you may be interested in  include;

  • How do people in the early stage of Alzheimer’s disease see their future?

  • Person-centredness in direct care workers caring for residents with dementia: Effects of a psycho-educational intervention

  • Increasing enjoyable activities to treat depression in nursing home residents with dementia: A pilot study

  • Innovative practice: Conversational use of English in bilingual adults with dementia

  • Appreciative Inquiry: An alternative to behaviour management

  • Living with Alzheimer’s: Managing memory loss, identity, and illness

How do people in the early stage of Alzheimer’s disease see their future?
Per Jørgen Langø Kristiansen et al
Older people fear Alzheimer’s disease. Central to the fear of the disease is the dread of the loss of identity or self. The aim of this study is to investigate the thoughts people in an early stage of Alzheimer’s disease have about their future selves, and the consequences these thoughts have for their temporary lives. The concepts of future and self are understood in terms of the concepts ‘possible selves’ and ‘selfhood’. The participants in the study are two men in their early 60 s. The data consist of four individual interviews and 11 facilitated family conversations including two of their next of kin. The data were collected over a two-year period. The data were interpreted using a hermeneutic analysis inspired by Gadamer. The main findings were the efforts made by the participants to live in the present and their worries about a future as ‘living dead’.
Keywords  Alzheimer’s disease, Harré’s theory of selfhood, self, possible selves, hermeneutic
pp. 145–157

Processes of user participation among formal and family caregivers in home-based care for persons with dementia
Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was ‘negotiating participation in decisions’. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients’ legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

Keywords  dementia patient, formal and family caregivers, health policy, home-based care, user participation

Relationship and stage of dementia differences in caregiver perspectives on the meaning of activity
Caregivers of persons living with dementia (PWD) taking cholinesterase inhibitors, who care 3 + h over three days/week, were interviewed. This study uses thematic content analysis to compare responses to the open-ended question “What do you believe getting involved in activities outside the home means for someone with dementia?” in spouse (n = 613) and adult–children (n = 260) caregivers, and across mild (n = 314) and moderate–severe stages (n = 280). For adult–children caregivers, activity participation promotes independence in their parents. Spouses describe activity in the context of their relationship with the PWD, and the experience is framed around their continued social roles as a couple. Mild-stage caregivers report the difficulty and negative outcomes (e.g. frustration, stigma) of engaging in activity, while moderate–severe caregivers discuss activity as preserving abilities in PWD and providing connection to cohort. This may indicate areas for improved activity provision and support for spouse (i.e. emotional) and adult–children (i.e. resources) caregivers across dementia stages.
Keywords  independence, stigma, apathy, social role, anxiety Kaitlyn P Roland et al
pp. 178–191

Person-centredness in direct care workers caring for residents with dementia: Effects of a psycho-educational intervention
Ana Barbosa et al
This study assessed the effects of a psycho-educational intervention on direct care workers' person-centredness during morning care to residents with dementia. A controlled pretest–posttest study was conducted in four aged-care facilities with 56 direct care workers (female, mean age 44.72 ± 9.02). Two experimental facilities received a psycho-educational intervention comprising person-centred care competences and stress management skills; control facilities received an education-only intervention, without stress support. In total, 112 video-recorded morning care sessions were coded using the Global Behaviour Scale. Both groups reported significantly higher scores on eight of 11 items of the Global Behaviour Scale and on the Global Behaviour Scale total score at posttest (F=10.59; p=0.02). Global Behaviour Scale total score improvements were higher for the experimental group, with values close to significance (F=3.90; p=0.054). The findings suggest that a psycho-educational intervention may increase care workers' person-centredness. Further research is needed to explore the long-term sustainability and extent of its benefits on workers and residents.
Keywords  aged-care facilities, behaviour, dementia, direct care workers
pp. 192–203

Increasing enjoyable activities to treat depression in nursing home residents with dementia: A pilot study
Catherine Travers et al
This pilot study aimed to assess the feasibility and acceptability of a behavioral activities intervention (BE-ACTIV) in Australian nursing homes. BE-ACTIV was developed by researchers at the University of Louisville, USA, to improve mood and quality of life (QOL) in nursing home residents with mild to moderate dementia. An eight-week trial was conducted and 10 residents with mild to moderate dementia received the BE-ACTIV intervention while eight residents received a Walking and Talking intervention. Measures of depression (GDS-12R) and QOL (QOL-AD-NH) were administered prior to and following the interventions. Qualitative feedback indicated residents benefited from BE-ACTIV, evident by improved mood, although no statistically significant treatment effect was found. Moreover, the intervention was found to be feasible and acceptable to Australian nursing home staff and our findings highlight the importance of individualizing activities for people with dementia, of which 1:1 staff attention was a key component.
Keywords  dementia, depression, nursing home, intervention study, psychosocial intervention
pp. 204–218

Innovative Practices

The stigma attached isn’t true of real life’: Challenging public perception of dementia through a participatory approach involving people with dementia (Innovative Practice)
Laura Reynolds et al
This paper discusses the potential impact of viewing public performances of an orchestra comprising people with dementia, family members, student volunteers and professional symphony orchestra members in contributing to challenging negative perceptions of dementia. Negative perceptions of dementia abound despite recent policy attempts to challenge the stigma associated with the condition. This paper reports on the findings from the performance element of a music project for people with dementia, known as the BUDI Orchestra, designed to replicate the traditional rehearse and perform cycle of musicians. Data were collected via self-completion questionnaires from audience members (N = 109) at three public performances. The performances exceeded the expectations of the general public, and findings suggest a positive impact on perceptions of dementia, demonstrating the power and potential of participatory approaches showcasing the achievements of those living with dementia when attempting to raise awareness of dementia and challenge negative perceptions.
Keywords  stigma, public perception, orchestra, music, dementia
2016; pp. 219–225

The development of environmental assessment tools to support the creation of dementia friendly care environments: Innovative practice
Sarah Waller et al
The need for more dementia friendly design in hospitals and other care settings is now widely acknowledged. Working with 26 NHS Trusts in England as part of a Department of Health commissioned programme, The King’s Fund developed a set of overarching design principles and an environmental assessment tool for hospital wards in 2012. Following requests from other sectors, additional tools were developed for hospitals, care homes, health centres and housing with care. The tools have proven to be effective in both disseminating the principles of dementia friendly design and in enabling the case to be made for improvements that have a positive effect on patient outcomes and staff morale. This paper reports on the development, use and review of the environmental assessment tools, including further work that is now being taken forward by The Association for Dementia Studies, University of Worcester.
Keywords  dementia friendly, environment, hospital, assessment, tools
pp. 226–232

Innovative practice: Conversational use of English in bilingual adults with dementia
Kristina M Kokorelias et al
Regression to mother tongue is common in those with dementia. In two long-term care facilities, we explored the use of bilinguals’ two languages for five older adults with mild-moderate dementia who have begun to regress to Greek. We also examined the role of Montessori DementiAbility Methods: The Montessori Way-based English language activities in fostering conversational use of English. Over 10 sessions, participants’ vocabulary or grammatical structure in English did not improve. However, four of the five participants were able to maintain a conversation in English for longer periods of time. This study contributes to strategies for optimizing meaningful conversation for bilingual long-term care residents with dementia. Moreover, the data suggest a change in the policy and practice for dementia care so that there are more opportunities for residents to speak English in non-English mother-tongue facilities. Greater attention to the specific language needs of bilinguals in English-dominant settings would also be advisable.
Keywords  activities, Alzheimer’s, communication, dementia, language, long-term-care, Montessori
pp. 233–242

Communication And Respect for people with Dementia: Student learning – A novel practical experience of undergraduate students interacting with people with dementia in care homes (innovative practice)
Julia Helen Wood et al
We designed an educational programme for multiple disciplines to improve healthcare students’ preparedness to work with people with dementia. It consisted of class-based sessions followed by a volunteer experience interacting with persons with dementia in care homes. This paper discusses the value and impact of this innovative experience.
Keywords  communication, education, healthcare students, pre-registration, care homes
pp. 243–248

Appreciative Inquiry: An alternative to behaviour management
Bernard McCarthy et al
Appreciative Inquiry is an approach to organisational change that has been effective and popular around the world for the past two decades. What could it have to offer us as an alternative to traditional ‘behaviour management’? Traditionally, in modern dementia care, we take a psychiatric approach to the range of actions that people engage in when stressed or traumatised by the cognitive, social and psychological losses associated with dementia. We call them symptoms of an illness – Behavioural and Psychological Symptoms of Dementia. Then, we medicate them away because if they are symptoms then medical solutions are called for. We may obtain a better outcome from a different direction. Appreciative Inquiry focuses on an organization as a ‘solution designed in its own time to meet a challenge or satisfy a need of society’. This approach focuses on what is working well and is effective in organisations rather than seeing the organisation as a problem to be solved. In this way, we may approach the individual person as a solution designed in its own time to meet a challenge or satisfy a need. Using the 4Ds of the Appreciative Inquiry approach, this article examines the process of Discovery, Dream, Design and Destiny, as it is applied to a case example of a care situation that usually ends with disruption and distress. By formulating affirmative topic choices, the staff group and individual carers may resolve issues with what people with dementia do or say in a way that is humane and hopeful.
Keywords  appreciative inquiry, behaviour management, BPSD, 4Ds, person-centred
First Published February 25, 2016; pp. 249–253

Book Reviews

Renée L Beard, Living with Alzheimer’s: Managing memory loss, identity, and illness
Simon Burrow This is an interesting and provocative book that takes a medical sociological perspective on Alzheimer’s disease (AD). It contributes significantly to those voices that seek to question the certainty of the diagnosis of AD and mild cognitive impairment (MCI) and the benefits of early diagnosis. The book, which is broad in scope, concerns the medicalisation of aging and memory loss and explores illness narratives through a sociological lens. Beard is particularly interested in the processes that influence how people are transformed into inhabiting “Alzheimer’s identities” through diagnosis and supports. In the latter part of the book, Beard focuses on the part played by the support organisation, the Alzheimer’s Association, in this socialisation process.

The core of the book is informed by observational work and interview data from people attending two diagnostic clinics in the U.S.A. This is a fascinating section. One of the key findings concerns how a diagnosis of MCI is readily conflated in the minds of people receiving the diagnosis of AD and close family members. There are complex factors at play Beard suggests, but it is interesting to note that AD was mentioned by doctors in every observed diagnosis of MCI and Beard describes how people were interpreting MCI within a framework “saturated” with AD. Alzheimer’s identities were not therefore the preserve of people with a confirmed diagnosis of AD but were also experienced by people with MCI who may never actually develop AD. Quite apart from the arguments Beard puts forward on the implications of these accounts with regard to theme of socialisation into AD/illness identities, the observations make one stop and think about the emotional impact of being on the receiving end of clinical processes, such as what are often considered “routine” cognitive testing procedures and receiving the much-feared diagnosis of AD; sometimes delivered in a most casual manner by the medical practitioner.
The book also draws attention to the fact that people interviewed who were diagnosed with MCI or AD were far from passive. People adapted in different ways, and there were clear benefits as well as psychosocial costs to receiving a diagnosis. Beard enters into the broader debates about the nature of AD and whether it can be considered a disease. Not everyone will agree with Beard, but this book contributes intelligent and informed debate on how we conceptualise dementia and AD, how we consider aging and memory, and the impact this has on our attitudes to age and impairment.
This book is a must read for those engaged in dementia studies and will encourage much, important debate.
pp. 254–255

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