Wednesday, 20 May 2015

Dementia Awareness Week UK

Professor John Keady
Dementia and Ageing Research Team, University of Manchester

To mark Dementia Awareness Week, we asked Professor John Keady to select some papers on dementia from JAN.

John Keady
I have chosen six papers to discuss briefly in this blog, with five of the papers published in 2014 and one in 2015. The papers introduce the diversity of dementia as a topic area for research, practice, education and policy and are written by authors from academic institutions around the world. This breadth of active research interest represents the global effort and challenges posed by dementia and the various methodologies necessary to help generate prospective solutions.

The first paper is written by a team of four researchers in Sweden and led by Eva Karlsson, who is named as a PhD student (Karlsson et al. 2014). The primary aim of this paper is to explore how people with Alzheimer’s disease present their own life story and is informed by the contribution of nine participants - five women and four men (age-range 60-81) - all of whom were in the earlier stages of Alzheimer’s disease. Interviews were conducted in the participant’s own homes with the interviews lasting an average of one hour; care partners were reportedly present during this interview period to help provide any contextual/word-finding areas salient to completing the story. However, the focus of the research study and reported experiences was founded squarely on the storyteller, i.e. the person with Alzheimer’s disease. Following transcription, two of the research team led the paradigmatic analysis of the data which led to the generation of four core dimensions that tied together each life story: contentment; connectedness; self-reliance; and personal growth. Interestingly, the dimension of contentment includes a statement that: 'there were, in all stories, also signs of both grief and sadness deriving from emotionally stressful situations in the participant’s lives’ (Karlsson et al. 2014 p.2794). 

This theme of grief and loss is picked up in the second paper by Linauer and Harvath (2014) which undertook a concept analysis of 49 peer-reviewed papers that addressed pre-death grief in family carers of people with dementia. The first author is listed as a doctoral candidate in the USA and the authors included two sources from the popular media that focussed on dementia (a well known book, The Long Goodbye (2014), and the film Iris (2001)) to help frame the presented analysis within an everyday context. Following the study inclusion criteria, the article shared a total of 20 terms for pre-death grief that were contained within the 49 papers and this outlined the complexity in attaching a transparent meaning to the concept. To help provide clarity, the paper systematically compared the characteristics of ‘pre-death grief’, ‘anticipatory grief’ and ‘chronic sorrow’ and whilst the review suggests some ‘blurring’ between the three concepts, differences were also found in the context of family caregiving and dementia. The reporting of these differences enabled the authors to provide a definition of pre-death grief which spun around the caregiver’s ‘emotional and physical response to the perceived losses in a valued care recipient’ (p. 2203). The authors also suggested that pre-death grief can also contribute to caregiver burden, depression and maladaptive coping. 

In a study led by Wang et al. (2014), who is also identified as a PhD student but with an academic base in both China and Australia, the research team continued the focus on family caregiving and dementia. However, this time, the design comprised of an interview-based study which involved 23 participants recruited through geriatric clinics in three university-associated teaching hospitals in China. The sample was made-up of mainly women who had been caring at home for a person with dementia for an average of five years. At its heart, the study was interested in exploring issues that were faced by the participating carers where there was little, if any, expectation of external service support. Of the four themes that emerged from analysis, perhaps unsurprisingly, ‘untreated behavioural and psychological symptoms of dementia’ [the name of the first theme] emerged as a significant cause of family stress, distress and risk. Interestingly, the study participants suggested that beneficial changes would include better coordination between primary and specialist dementia services and that community nurses should have an integral role in this context. 

Papers four, five and six are all drawn from the nursing home setting home setting. Liu (2014) working from the Hong Kong Polytechnic University provides an insightful interview-based study that explored nursing assistant’s role in the identification, treatment and management of pain in a resident with dementia. Changes in a resident’s behaviour, for example through excessive walking or increased vocalisation, could be a sign that the person with dementia is in pain, and the study suggested that the knowledge held by nursing assistants was not always sought by the qualified staff to whom they were responsible. It was an inverse care relationship: the staff with the most familiarity and contact with residents with dementia were given the least autonomy and input into clinical decision-making. A study by Konno et al. (2014) conducted a best evidence review of non-pharmacological interventions for resistance-to-care behaviours of residents with dementia in a personal care context. Intervention studies conducted between 1990-2012 were included in the review and a total of 19 identified, ranging from the implementation of relaxing music at mealtimes to ability-focussed morning care. The evidence for such interventions was persuasive in most instances, but similar to several studies in this blog, the researchers located a number of different descriptive terms that related to the same phenomenon, for instance when looking at approaches to managing agitation. This made cross-comparison difficult. Konno et al. (2014) suggested that standardised terminology would help to build a better platform between researchers, caregivers and practice. The final choice of paper is by Willemse et al. (2015) where the lead researcher is a PhD student based at the VU University Amsterdam. It was selected as it contrasts nicely with the work of Konno et al. (2014) in that in the extensive national survey that sits at centre of this work (n=1093 nursing staff), it was reported that a person-centred workforce is a more effective one. In other words, it is important for nursing homes and managerial systems to create a positive work environment where staff well-being and decision-making is supported and integral to the culture of care. A simple but essential message as the nursing and dementia field moves forward.

Professor John Keady is Chair of Mental Health Nursing and Older People at The University of Manchester, UK where he holds a joint position with Greater Manchester West Mental Health NHS Foundation Trust. John is an invited Senior Fellow with the NIHR School for Social Care Research [2015-2019] and leads the inter-disciplinary Dementia and Ageing Research Team at The University of Manchester. John is a founder and co-editor of the bi-monthly Dementia: the international journal of social research and practice, published by Sage.

You may also like to read JAN's recent special section on dementia.


KARLSSON E., SÄVENSTEDT S., AXELSSON K. & ZINGMARK K. (2014) Stories about life narrated by people with Alzheimer’s disease. Journal of Advanced Nursing 70(12), 2791–2799. doi: 10.1111/jan.12429

KONNO R., KANG H.S. & MAKIMOTO K. (2014) A best-evidence review of intervention studies for minimizing resistance-to-care behaviours for older adults with dementia in nursing homes. Journal of Advanced Nursing 70(10), 2167–2180. doi: 10.1111/jan.12432

LINDAUER A. & HARVATH T.A. (2014) Pre-death grief in the context of dementia caregiving: a concept analysis. Journal of Advanced Nursing 70(10), 2196–2207. doi: 10.1111/jan.12411

LIU J.Y.W. (2014) Exploring nursing assistants’ roles in the process of pain management for cognitively impaired nursing home residents: a qualitative study. Journal of Advanced Nursing 70(5), 1065–1077. doi: 10.1111/jan.12259

WANG J., XIAO L.D., HE G.-P. & DE BELLIS A. (2014) Family caregiver challenges in dementia care in a country with undeveloped dementia services. Journal of Advanced Nursing 70(6), 1369–1380. doi: 10.1111/jan.12299

WILLEMSE B.M., DE JONGE J., SMIT D., VISSER Q., DEPLA M.F.I.A. & POT A.M. (2015) Staff’s person-centredness in dementia care in relation to job characteristics and job-related well-being: a cross-sectional survey in nursing homes. Journal of Advanced Nursing 71(2), 404–416. doi: 10.1111/jan.12505

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