April 30, 2015

latest journal - DEMENTIA ; The International Journal of Social Research and Practice


March 2015; 14 (2)

  Rune Svanström and      Annelie Johansson Sundler

Gradually losing one’s foothold – A fragmented existence when living alone with dementia

The number of persons with dementia who lives at home for a longer period of time after diagnosis is increasing. Even if the literature in the dementia field is growing, there is a need for more knowledge about everyday life of persons with a dementia disease; particularly the lived perspective of persons who live alone. The aim of this study was to elucidate the phenomenon of living alone with dementia and having a manifest care need. This phenomenological study was carried out from a reflective lifeworld approach. The data material in the study consisted of field notes from 32 visits and transcriptions from 11 tape-recorded conversations with six participants. The results reveal that the person with dementia who lives alone ends up in a vague existence where they cannot survive alone. The person’s level of activity comes to a halt and body movement becomes slower. Daily life becomes more difficult to manage and the person’s earlier natural way of relating to the world and the people around them is gradually lost. This is followed by a loneliness and forgetfulness that cloud the meaning of life. This study highlights the importance of the patient’s perspective needed to better understand the inner life of a person who suffers from dementia. This understanding is important in the organization of help and care as well as for caregivers to better understand these individuals and their needs.
Samantha Large and Richard Slinger

Grief in caregivers of persons with Alzheimer’s disease and related dementia: A qualitative synthesis

This article provides a meta-synthesis of studies focusing on grief in caregivers of people with Alzheimer’s disease or related dementia. Through a systematic search, 11 articles met the inclusion criteria that care receivers had a diagnosis of Alzheimer’s disease or related dementia, caregivers were informal caregivers, and the study focused on caregiver grief. The meta-synthesis followed a meta-ethnography approach based on reciprocal translation. Six themes were identified, namely challenges of caregiving, losses and changes in the relationship, the role of dementia in grief, striving despite dementia, utilising social support and death as a relief from caregiving. Themes are discussed within an integrated framework showing the connected relationships between themes. The devised framework of themes illustrates the general experience of caregiver grief and can be used to devise specific, targeted interventions to help caregivers to identify and work through their grief.

Analisa Smythe,  Pete Bentham,  Catharine Jenkins,  and Jan R Oyebode

The experiences of staff in a specialist mental health service in relation to development of skills for the provision of person centred care for people with dementia

. There is an urgent need to raise competence of staff delivering care to people living with dementia across health, social and voluntary sector provision. Effective education and training will build capacity and improve staff knowledge. However, at present not enough is known about the experiences of staff involved in gaining the skills, knowledge and attitudes required to support provision of high quality care for people with dementia.

This study was conducted within a large National Health Service Trust in the UK serving an urban, ethnically mixed population, in collaboration with a local university. The trust responded to government policy by seeking to identify staff training needs.

The aim was to explore the experiences of staff working within a specialist mental health service in relation to development of skills for the provision of person-centred care for people with dementia. To achieve this, staff roles, experiences of dementia training and the ways in which staff feel they learn were explored through focus group interviews. Relatives’ views of staff competencies necessary for effective care provision were also explored to supplement the data from staff. A total of 70 staff and 16 family carers participated and data were subjected to inductive thematic analysis.

Five themes emerged: competency-based skills, beliefs, enablers and barriers and ways of learning. Findings suggested participants felt that skills for person-centred care were innate and could not be taught, while effective ways of learning were identified as learning by doing, learning from each other and learning from experience.

p 184-198, Katherine M. Abbott,  Janet Prvu Bettger,  Keith N. Hampton, and Hans-Peter Kohler

The feasibility of measuring social networks among older adults in assisted living and dementia special care units

Background Studies indicate that social integration has a significant influence on physical and mental health. Older adults experience an increased risk of social isolation as their social networks decline with fewer traditional opportunities to add new social relationships. Deaths of similar aged friends, cognitive and functional impairments, and relocating to a nursing home (NH) or assisted-living (AL) facility contribute to difficulties in maintaining one’s social network. Due to the paucity of research examining the social networks of people residing in AL and NH, this study was designed to develop and test the feasibility of using a combination of methodological approaches to capture social network data among older adults living in AL and a dementia special care unit NH.

Methods Social network analysis of both egocentric and sociocentric networks was conducted to visualize the social networks of 15 residents of an AL neighborhood and 12 residents of a dementia special care unit NH and to calculate measures network size, centrality, and reciprocity.

Results The combined egocentric and sociocentric method was feasible and provided a robust indicator of resident social networks highlighting individuals who were socially integrated as well as isolated.


p199-219 Catherine Quinn,  Linda Clare,  and Robert T Woods

Balancing needs: The role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia

This paper investigates how meaning, motivation and relationship dynamics influence the caregivers’ subjective experience of caregiving. We interviewed 12 family caregivers of relatives with dementia. We analysed transcripts of these interviews using interpretative phenomenological analysis. Six key themes emerged from the analysis, which were encompassed under an overarching theme of ‘balancing needs’. This describes the caregivers’ constant struggle to balance their own needs against those of their relative, which created a series of dilemmas. These dilemmas emerged from the desire to try to preserve the caregivers’ relationship with their relative, while recognising that this relationship was changing. The caregivers’ relationship with their relative influenced the caregivers’ motivations to provide care and gave caregiving meaning. Although caregivers were motivated to provide care the battle to balance needs meant that the caregivers recognised there might come a time when they may need to cease caregiving.

p 220-237 Jane McKeown, Tony Ryan,  Christine Ingleton,  and Amanda Clarke

‘You have to be mindful of whose story it is’: The challenges of undertaking life story work with people with dementia and their family carers

Introduction Life story work is increasingly being used with people with dementia; this work offers a critical appraisal of some challenges that may be faced in practice.

Design and methods An in-depth case study analysis was undertaken to understand the experiences of people with dementia, family carers and care staff in using life story work in an NHS Mental Health and Social Care Trust. Data collection included semi-structured interviews, observation, conversations and field notes.

Findings Private memories were sometimes recalled by the person with dementia that were not for inclusion in any written product; enabling the person with dementia to tell their own life story could be a challenge; quality of the life story books was variable and; at times, life story work may be overused with the person with dementia.

Conclusion Services should not be deterred from undertaking life story work with people with dementia, but there is a need to adopt a planned approach to its implementation that includes facilitation, education and supervision.

p 238-256

Innovative practice

Andrea Mayrhofer,  Claire Goodman,  and Cheryl Holman

Establishing a community of practice for dementia champions (innovative practice)

This discussion paper considers the currently evolving roles of dementia champions and describes an initiative designed to support their activities. The aim of this initiative was to establish a county-wide group that has a shared group identity and sufficient critical mass that is able to identify and implement dementia training and development needs for the health and social care workforce. The approach used to achieve this aim was a Dementia Champion Community of Practice Project, which involved dementia leads in various NHS Trusts. Whilst this approach might be effective at practitioner level, the Dementia Champion Community of Practice Project experience suggests that if such initiatives are to be sustainable they need to be strategically placed within networks that can bring together service providers, educators and commissioners.


p 259-266, Mary Bronson and  Christine Toye

Providing information for family carers of hospital patients experiencing dementia

There is concern that people with dementia may be at particular risk of elder abuse however there is little data to confirm such fears. This paper presents findings from an up-dated investigation of secondary sources of data about the abuse of older people with dementia in England conducted in 2013. There are many sources of data about poor care, abuse and neglect of people with dementia in care home and hospital settings but these are collected for different purposes and hard to link. The article discusses the ways in which dementia care practitioners may be able to make the most of existing data.

p 267-272

Jill Manthorpe

The abuse, neglect and mistreatment of older people with dementia in care homes and hospitals in England: The potential for secondary data analysis: Innovative practice

There is concern that people with dementia may be at particular risk of elder abuse however there is little data to confirm such fears. This paper presents findings from an up-dated investigation of secondary sources of data about the abuse of older people with dementia in England conducted in 2013. There are many sources of data about poor care, abuse and neglect of people with dementia in care home and hospital settings but these are collected for different purposes and hard to link. The article discusses the ways in which dementia care practitioners may be able to make the most of existing data.Keywords

p. 273-279,

Book reviews


Julian C Hughes, How we think about dementia: Personhood, rights, ethics, the arts and what they mean for care

Professor Julian Hughes is a leading and significant figure in dementia studies, this book , directly targets the reader’s self-conceptions and self-beliefs about dementia (and dementia care). The aims are firstly, to clarify thinking in dementia and dementia care; and second, to make these conceptual clarifications accessible to a wide range of stakeholders, including people living with dementia, their family, friends and care workers, filtered through a contemporary frame of reference, Professor Hughes assimilates a number of  conceptual, theoretical and practice reflections into one coherent book that dispels any fears about accessibility. The book is divided into five parts comprising Ageing (two chapters); Personhood (three chapters); Capacity and Incapacity (three chapters); Palliative and Supportive Care (four chapters); and Arts (two chapters); so, 14 chapters in total and the book ends with a short four-page conclusion.

P  281–282

When caring takes courage: A compassionate, interactive guide for Alzheimer’s and dementia caregivers by Mara Botonis,

.. the information is both useful and informative. Whilst some of the information is very basic, this is the key information that immediately evades you when you most need it at a stressful time in your caring role. To this end, I think that the book would also be useful as an aide memoire for professionals and academics working with and researching dementia. It provided valuable prompts in order for you to pass on vital life information to anybody else who
might be providing care and support in your absence. The frequency chart was also useful to identify changes in behaviour which had taken place and could provide information identifying the behaviour of the person with dementia with different care-givers. The Validation Technique identified on p. 58 was something that I adopted immediately after reading the relevant chapter. It is something that I had never thought of implementing beforehand. The chapter on Adapted Activity Ideas was great, and I now have more meaningful times with my mum. As a professional seamstress, she is now delighted to have
a bag of different-sized fabrics that need stroking, folding, hiding and quashing regularly. A great, easy-to-understand read, with lots of hints, tips and ideas along with more formal techniques for those who are currently caring for somebody or those considering entering a caring profession. It is not a ‘start at the beginning and finish at the end’ style of book, but a book that can be dipped into at any page or chapter and useful information can be found.

The quote on p. 124 is now displayed around my house and has become my motto for when times are hard:

‘‘Step back when it hurts too much, come closer when you are strong enough and be there when you are able so that you can savour every moment that unexpectedly brings back that familiar smile, that well-known twinkle in the eye or the touch of a hand that reminds you of that which will never be forgotten, that Alzheimer’s disease may have changed the love you shared but it will never, can never and doesn’t have the power to ever, erase it.’’

Angela Rossiter p 14: 282,

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