November 11, 2014

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

Full text articles are available to fee paying members of Alzheimer’s Australia NSW by emailing NSW.Library@alzheimers.org.au



Dementia: Stigma, Language, and Dementia-friendly
Editorial by Kate Swaffer
As the incidence of dementia rises globally, the rate and scale at which it is currently escalating has forced governments to make it a health priority, and from a consumer’s perspective, it is therefore very timely to re-consider the language being used to represent people with dementia and its impact on stigma…'
 
(See also the Alzheimer’s Australia Report Dementia Friendly Societies: The Way Forward  https://fightdementia.org.au/sites/default/files/20130604_NAT_PUB_Paper31DementiaFriendlySocieties.pdf
And
Kate Swaffer’s blog on living with dementia http://kateswaffer.com/daily-blog/ )
p. 709-716 

Enriching the care of patients with dementia in acute settings? The Dementia Champions Programme in Scotland
Admission to hospital has been found to have a negative impact on people with dementia. The Scottish Dementia Champions programme was developed to prepare health and social service Dementia Champions working in acute settings as Change Agents. The programme was initially delivered to a cohort of 100 health professionals via blended learning, and comprised five study days, a half day spent in a local community setting, and e-learning. In order to complete the programme and graduate, participants were required to complete and submit reports relating to three work-based activities.
p. 717-736 

Conversation analysis as a method for investigating interaction in care home environments
This article gives an outline of how the socio-linguistic approach of conversation analysis can be applied to the analysis of carer–patient interaction in care homes. A single case study from a routine encounter in a residential care home is presented. This is used to show how the conversation analysis method works, the kinds of interactional and communication features it can expose, and what specific contribution this kind of micro-interactional approach may make to improving quality of care in these environments.
p. 737-746 

Attachment in people with dementia and their caregivers: A systematic review
Attachment bonds are important for personality development, emotion regulation and mental
health throughout the lifespan. This systematic review explores the relevance of attachment for people with dementia, and how attachment influences the experience of caregivers of people with dementia. Eighteen studies were included. Three focused on attachment in terms of parent fixation in dementia, three examined attachment behaviour in dementia, five addressed attachment and dementia-related behavioural problems, and seven concentrated on attachment  in caregivers. Attachment behaviours were evident at various stages of dementia and the presence of parent fixation was observed when attachment needs were not being met. Insecure attachment was related to neuropsychiatric symptoms. Attachment security had important consequences for caregiver psychological health. Implications of methodological issues such as the choice of respondent, measurement issues, and the lack of a longitudinal perspective are discussed. The implications of attachment for the support of people with dementia and caregivers are considered.
p. 747-767 

Psycho-educational support for relatives of people with a recent diagnosis of mild to moderate dementia: An evaluation of a 'Course for Carers'
Currently there are 820,000 people with dementia in the UK, a figure projected to reach 1.7 million by 2050. Policy and practice emphasis on early intervention in dementia and support of family carers foreground a need to explore service efficacy for relatives of those with a recent diagnosis. Existing evidence suggests that psycho-educational interventions can significantly enhance carer well being especially when well targeted and group based. A rolling programme of seven psycho-educational Courses for ‘new carers’ in one area of England was the subject of a systematic evaluation incorporating a quantitative rating scale and qualitative data. Findings suggest that the Courses achieved a number of intersecting aims: they provided psychological support; offered advice; enhanced coping skills; boosted confidence; increased knowledge; and prepared the carer for the future. That the Courses were designed and delivered by specialist staff – primarily psychologists, offered a social dimension, were time limited and free are noteworthy features. The evaluation suggests that as a model the Course has considerable short and longer term preventive potential; also that it could be replicated elsewhere in the country and achieve similar outcomes.
p. 768-787 

 The experience of sons caring for a parent with dementia
This study explored the experiences of sons caring for a parent with dementia. Individual, semi-structured interviews were conducted with a purposeful sample of sons (n = 13) in a rural part of Ireland. Interviews were audiotaped, transcribed verbatim and analysed for common themes. The key themes that emerged were ‘the parental bond’, ‘a binding role’, ‘coordinating care and support’ and a ‘getting on with it’ approach to care. The study highlighted the commitment of sons to their caregiving role and the strong sense of duty that motivated them to provide care. The findings suggested that while many aspects of the caregiving experience such as lack of information and support are gender neutral, there are differences in the caregiving experiences of men and women in how they view their relationship with their parent and in the management of their caregiving role that merit further investigation.
p. 788-802 

Caregiving stress and coping: A thematic analysis of Chinese family caregivers of persons with dementia
Purpose: This study aims to identify caregiving stressors and coping strategies in a sample of family caregivers of persons with dementia living in Shanghai, China.
Methods: A sample of 18 family caregivers participated in semi-structured face-to-face interviews. Information regarding caregiver appraisal of caregiving situations, difficulties with care provision, and ways of dealing with stressors were obtained. Thematic analysis was used to assess the interview data.
Results: In addition to stressors directly related to caregiving demands (i.e., burden due to care recipient limitations in physical, cognitive, or behavioral functions), other salient stressors that emerged were role strains, family conflicts, and pressure from the social environment. Yet, caregivers demonstrated resilience by drawing on their coping resources from a variety of sources, including personal experience, family, technology and information, religion, and governmental support.
Implications: Specific attention needs to be given to help family caregivers alleviate stress due to family conflicts and pressure from the social environment. Policy formulation and program design needs to build on caregiver strengths to support and empower Chinese families caring for relatives with dementia patients.
p. 803-818

Is gardening a stimulating activity for people with advanced Huntington's disease?
This study evaluated adapted gardening as an activity for people with advanced Huntington's disease (HD) and explored its therapeutic aspects. Visitors and staff completed a questionnaire and participated in structured interviews to capture further information, whereas a pictorial questionnaire was designed for residents with communication difficulties. Staff reported that gardening was a constructive, outdoor activity that promoted social interaction, physical activity including functional movement and posed cognitive challenges. Half the staff thought the activity was problem free and a third used the garden for therapy. Visitors used the garden to meet with residents socially. Despite their disabilities, HD clients enjoyed growing flourishing flowers and vegetables, labelling plants, being outside in the sun and the quiet of the garden. The garden is valued by all three groups. The study demonstrates the adapted method of gardening is a stimulating and enjoyable activity for people with advanced HD.
p. 819-833 

Staging casual conversations for people with dementia
Social isolation is a key concern for individuals with dementia in long-term care. A possible solution is to promote social interaction between residents. A first step toward facilitating positive relationships between residents with dementia is to understand the mechanisms behind their interactions with each other, and also how their relationships with each other are built through such interactions. Drawing on casual conversations between residents in a special care unit for dementia, this paper uses systemic functional linguistics to examine how people with dementia use language to enact and construct their role-relations with each other. Results suggest people with dementia are able and willing conversationalists. However, factors such as the extent of communication breakdown and compatibility of the interlocutors may influence whether positive relations develop or not. Casual conversation is suggested to be a promising activity to encourage positive interpersonal processes between individuals with dementia in residential care.
p. 834-853 

Book Reviews – Contact the library on nsw.library@alzheimers.org.au to reserve these books
Pathways through care at the end of life: A guide to person-centred care.
Anita Hayes, Claire Henry, Margaret Holloway, Katie Lindsey, Eleanor Sherwen and Tes Smith
For me, the book proved highly accessible and readable, providing an excellent presentation of how open and inclusive communication plays a major role in providing end of life care. The opening chapter sets the context and offers some consideration of terms, such as ‘end of life’, ‘palliative’ and ‘secularisation’. A small surprise was that the differentiation of such terms from ‘dying care pathways’ (p. 157) is not introduced until later in the book…
Mark Harrison, St Luke’s Hospice, Winsford, Cheshire 

ABC of dementia
Bernard Coope and Felicity Richards (eds),
I read this book in a couple of sittings and found it to be a really informative, clear and easyto- read guide. I feel it would be helpful for those professionals working with people living with dementia as well as family carers. It would also be a great resource for student nurses.The further reading recommendations at the end of each chapter are very helpful additions, as it is an easy reference to the information and filters what could feel overwhelming otherwise. I found including the chapter ‘Dementia and the Law’ particularly useful, as this is often confused and misunderstood. Having all the information in one place is certainly of benefit, whilst the logical, organised way the chapter is presented reduces the risk of misinterpretation. It also highlights the need for timely decision making and the importance of early diagnosis….
Lorriane Butterworth, Admiral Nurse Clinical Lead, Cornwall Care House 

Creating culturally appropriate outside spaces and experiences for people with dementia: using nature and the outdoors in person-centred care
Mary Marshall and Jane Gilliard (eds)
Marshall and Gilliard have drawn together a thought-provoking and diverse international mix of contributions concerned with the relationship of culture, identity and the environment. Their argument is that the outdoors is not just ‘the outdoors’, but something we perceive and experience through a cultural lens. A premise for the book is that people may avoid outdoor environments if they are unable to make sense of them: The first step on this journey towards making outside spaces more familiar is to change our language. We need to talk about ‘outside spaces’ or ‘outdoor spaces’ rather than ‘gardens’. If we use the term ‘gardens’ we immediately begin to have preconceptions about what we are trying to provide….
Richard Ward,Lecturer, School of Applied Social Science, University of Stirling


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