May 14, 2018

Dementia – The international journal of social research and practice, - Volume 17, Issue 3, April 2018

*These resources and articles and books are available to members of dementia Australia library NSW - if you would like to reserve them please email the Library on

Dementia looming!

Quantifying the benefits of peer support for people with dementia: A Social Return on Investment (SROI) study
 Elizabeth Willis,  Amy C Semple
pp. 266–278

Concept mapping to improve team work, team learning and care of the person with dementia and behavioural and psychological symptoms

Suzanne M Aberdeen ,  Graeme Byrne
pp. 279–296

Peer support for people with dementia and carers is routinely advocated in national strategies and policy as a post-diagnostic intervention. However there is limited evidence to demonstrate the value these groups offer. This study looked at three dementia peer support groups in South London to evaluate what outcomes they produce and how much social value they create in relation to the cost of investment.

Findings showed the three groups created social value ranging from £1.17 to £5.18 for every pound (£) of investment, dependent on the design and structure of the group. Key outcomes for people with dementia were mental stimulation and a reduction in loneliness and isolation. Carers reported a reduction in stress and burden of care. Volunteers cited an increased knowledge of dementia.

This study has shown that peer groups for people with dementia produce a social value greater than the cost of investment which provides encouraging evidence for those looking to commission, invest, set up or evaluate peer support groups for people with dementia and carers. Beyond the SROI ratio, this study has shown these groups create beneficial outcomes not only for the group members but also more widely for their carers and the group volunteers.

RemoDem: Delivering support for people with dementia in remote areas
 Alison Bowes,  Alison Dawson

 29 RemoDem aimed to develop, test and evaluate services for people with dementia in remote areas of the Faroe Islands, Greenland, Sweden and Scotland. Formative and summative evaluation used a flexible research design including collection of baseline data, interviews and focus groups with key informants and data relating to service users, i.e. people with dementia and their carers. Challenges for service providers included organisational difficulties, lack of clear information about their populations with dementia and lack of knowledge in local communities. Test sites which developed services building on their particular local starting points adopted both specialist and ‘off the shelf’ technologies and found that these were generally helpful for people with significant support needs. The flexible research design was found to be essential in the real world conditions of the service development and evaluation. Services were more successful where more mature and less experimental technologies were used. The new services promised to address effectively challenges of remoteness including distance, communication and workforce deployment issues.7–314

Caring in the wake of the rising tide: Moral distress in residential nursing care of people living with dementia
 Em M Pijl-Zieber,  Olu Awosoga
  ; pp. 315–336


Moral distress is increasingly being recognized as a concern for health care professionals. The purpose of this study was to explore the nature and prevalence of moral distress among nursing staff who care for people living with dementia.

Moral distress is prevalent in the nursing staff who provide dementia care. Nursing staff reported experiencing moral distress at least daily or weekly. Both frequency and severity of moral distress increased with proximity to (amount of time spent at) the bedside. Moral distress had negative psychological and physiological effects on nursing staff, and affected intention to quit.

In their own words: The experience and needs of children in younger-onset Alzheimer's disease and other dementias families
 Caroline Rosenthal Gelman,  Kate Rhames


Because of the age of persons diagnosed with younger-onset Alzheimer's disease or other dementias (YOD), an important and as yet relatively little explored area of YOD, particularly in the United States, is the impact on young children of having a parent with YOD. After reviewing the small but growing research in this area, we report on findings from 12 in-depth interviews with children and well-parents in families with a parent with YOD on the experience and needs of children having a parent with this diagnosis. Children report disruption in many aspects of their lives: their developmental trajectory, emotional and psychological development, familial and broader social relationships, and financial stability. Despite these significant disruptions, and a dearth of information, resources, and services tailored to their individual and familial needs, these children demonstrate remarkable resilience and self-awareness. We discuss implications for interventions with these families.

Concepts for communication about risk in dementia care: A review of the literature

 Mabel Stevenson,  Michelle E McDowell
 pp. 359–390


Communication about risk is central to decisions in dementia care. This review synthesises research on risk concepts and communication in dementia. Twelve bibliographic databases and one online search engine were searched up to February 2016. Reference lists of two related literature reviews were used. Thirty-four articles were identified that focused on risk concepts; two articles related to risk communication. Concepts were often socially constructed, and perceptions may differ from actual adverse outcomes. Perceptions of risk and thresholds of risk-tolerance varied between individuals with dementia, carers and professionals. Individuals with dementia were found to behave differently from controls when making decisions involving risk information in experimental settings. Cognitive impairment was also associated with lower health numeracy. These findings highlight the importance of communication between stakeholders when making decisions and of presenting information in an appropriate way to support informed and positive risk taking. Research is required on risk communication in dementia.

Book Review

Kate Swaffer, What the hell happened to my brain? Living beyond dementia
Jessica Young, ,  Kate Swaffer

Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media's role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity. Kate's powerful words will challenge misconceptions about dementia, and open our eyes to new ways of supporting people with the diagnosis. A must read for people with dementia and their families as well as for professionals and carers.
 pp. 391–394

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