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Article
Publication date: 24 July 2020

Therése Bielsten, John Keady, Agneta Kullberg, Reena Lasrado and Ingrid Hellström

Interventions aimed at couples where one partner has dementia are often targeting burden, depression and cognitive function and do not focus on relationship and…

Abstract

Purpose

Interventions aimed at couples where one partner has dementia are often targeting burden, depression and cognitive function and do not focus on relationship and interpersonal issues. Furthermore, interventions within this population do not seem to have embraced a salutogenic and authentic dyadic approach where both partners’ experiences are considered. To address this gap, a self-management app, DemPower, which was piloted and tested among couples where one partner has dementia living at home, has been developed. This study explores couples‘ everyday experiences of engaging with the DemPower.

Design/methodology/approach

Semi-structured interviews with couples were analysed using thematic analysis.

Findings

The findings resulted in the following themes: growth of the relationship; we are not alone; and positive approach. The findings indicated that the experiences of a salutogenic and dyadic intervention can contribute to the feelings of empowerment, satisfaction of couples’ achievements and a sense of support through peers and with the intervention itself.

Originality/value

The findings of this study indicate that couples where one partner has dementia appreciate interventions that focuses on a salutogenic approach to their everyday life and relationship. The dyadic intervention contributed to feelings of empowerment, satisfaction of couples’ achievements and a sense of support through peers and through the intervention itself. Discussing, inventory and focus on strengths, resources and quality of life can therefore give couples insight in their growth of the relationship and their transitions during the dementia trajectory. Furthermore, this study can serve as an eye opener in health care for the type of support couples need and wishes to receive. This means that care for people with dementia and partners should adopt a more health-promoting approach.

Details

Quality in Ageing and Older Adults, vol. 21 no. 3
Type: Research Article
ISSN: 1471-7794

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Article
Publication date: 12 June 2017

Marina Gharibian Adra, John Hopton and John Keady

The purpose of this paper is to explore perceptions, perspectives and meaning of quality of life for a sample of older residents, care staff and family caregivers in two…

Abstract

Purpose

The purpose of this paper is to explore perceptions, perspectives and meaning of quality of life for a sample of older residents, care staff and family caregivers in two nursing homes in Lebanon.

Design/methodology/approach

A classic grounded theory study was conducted between 2010 and 2011 in two nursing homes in Beirut. The semi-structured interviews were undertaken with a theoretical sample of 20 residents, 8 family caregivers and 11 staff. The constant comparative method was used to analyze the data.

Findings

Three distinct but interrelated properties of quality of life emerged from this process: “maintaining self,” “maintaining identity” and “maintaining continuity”. The dynamics that exist within and between each of these properties provide an indicator about shared and distinct meanings and the implications for care practice.

Research limitations/implications

The study was conducted in one city in Lebanon; accordingly, the transferability of findings may be challenging.

Practical implications

Implications for nursing and nursing policy – improving Lebanese national standards and regulations applicable to nursing home residents may help to enhance residents’ care needs and quality of life.

Social implications

There was limited guidance aimed at helping older residents to voice and increase their choice and control.

Originality/value

This paper provides new insights into the process of outlining the properties attached to the phenomenon of quality of life in nursing homes in Lebanon. It will be of interest to those in nursing home care as well as to policy makers.

Details

Quality in Ageing and Older Adults, vol. 18 no. 2
Type: Research Article
ISSN: 1471-7794

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Article
Publication date: 11 September 2017

Caroline Margaret Swarbrick, Elizabeth Sampson and John Keady

The purpose of this paper is to explore some of the ethical and practical dilemmas faced by an experienced researcher in undertaking research with a person with dementia…

Abstract

Purpose

The purpose of this paper is to explore some of the ethical and practical dilemmas faced by an experienced researcher in undertaking research with a person with dementia (whom we have called Amy). Amy died shortly after a period of observation had ended and the family subsequently consented to the data being shared.

Design/methodology/approach

This individual case study presentation was nested within a larger study conducted in England and Scotland between 2013 and 2014. The overall aim of the main study was to investigate how healthcare professionals and informal carers recognised, assessed and managed pain in patients living with dementia in a range of acute settings.

Findings

The presented case study of Amy raises three critical reflection points: (i) Researcher providing care, i.e. the place and positioning of compassion in research observation; (ii) What do the stories mean? i.e. the reframing of Amy's words, gestures and behaviours as (end of) life review, potentially highlights unresolved personal conflicts and reflections on loss; and (iii) Communication is embodied, i.e. the need to move beyond the recording of words to represent lived experience and into more multi-sensory methods of data capture.

Originality/value

Researcher guidance and training about end of life observations in dementia is presently absent in the literature and this case study stimulates debate in a much overlooked area, including the role of ethics committees.

Details

Quality in Ageing and Older Adults, vol. 18 no. 3
Type: Research Article
ISSN: 1471-7794

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Article
Publication date: 13 March 2017

Sarah Campbell, Nick Ponsillo, Paul Budd and John Keady

The purpose of this paper is to consider the work conducted by Manchester Camerata (an internationally renowned and world-class chamber orchestra) programme for people…

Abstract

Purpose

The purpose of this paper is to consider the work conducted by Manchester Camerata (an internationally renowned and world-class chamber orchestra) programme for people with dementia in one care home in the north west of England. The study aim was to undertake an exploratory qualitative evaluation of experiences of those taking part in its ten week “Music in Mind” programme, namely care home staff, Manchester Camerata musicians/organisational staff, care home activity workers, the assigned music therapist and visiting family carers.

Design/methodology/approach

During July-September 2014 a sample of 11 participants was recruited and a total of 19 interviews conducted over ten weeks. All respondents were offered the opportunity to be interviewed more than once. Interview data were supplemented by information gathered at two musicians de-brief sessions and from two activity workers’ diaries. All data was organised using NVivo 10 and thematic analysis applied to the whole data set. People with dementia could not be included in the sample owing to the time limitations on starting and completing the evaluation.

Findings

This analytical process generated three overarching themes: Making it Happen, which referred to the contextual, structural and organisational considerations necessary for setting up the engagement programme; Orchestrating Person-centred Care, which addressed the importance of building relationships through person to person communication; Making Musical Connections, which identified the sensory and embodied qualities of live music and the need to capture in-the-moment experiences.

Originality/value

Whilst each of these theme headings has slightly different meanings and applications to each of the participating stakeholders, the evaluation highlights the potential power of improvised music making to equalise and harmonise the group dynamics by co-creating “in-the-moment” experiences.

Details

Quality in Ageing and Older Adults, vol. 18 no. 1
Type: Research Article
ISSN: 1471-7794

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Article
Publication date: 6 November 2017

Simon Burrow, Tim Bradshaw, Hilary Mairs, Helen Pusey and John Keady

The purpose of this paper is to describe the findings from an electronic questionnaire survey which set out to explore experiences of graduates of a part-time Master’s…

Abstract

Purpose

The purpose of this paper is to describe the findings from an electronic questionnaire survey which set out to explore experiences of graduates of a part-time Master’s programme in dementia care at The University of Manchester.

Design/methodology/approach

An electronic questionnaire survey was sent to 57 graduates who had studied on the programme since it began in 2003. Thematic analysis was applied to qualitative data from responses to six open-ended questions.

Findings

In total, 31 completed questionnaires were received. Four key themes were identified from the qualitative data: juggling competing demands; experiencing personal growth and achievement; locating sources of support; and supporting changes to practice.

Research limitations/implications

Limitations included the small sample size and the survey not covering the experiences of students who had failed to complete the first year of study.

Originality/value

The study demonstrates the perceived value of dementia education at more advanced levels for people working in professional roles in dementia care, this included professional and personal development and supporting changes to practice. The study additionally adds to a limited evidence base relating to how mature, health and social care students experience part-time study in higher education and has implications for future research aimed at informing the development of appropriate course design and employer support.

Details

The Journal of Mental Health Training, Education and Practice, vol. 12 no. 6
Type: Research Article
ISSN: 1755-6228

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Article
Publication date: 1 June 2007

John Keady and Sion Williams

Co‐constructed Inquiry has been built in partnership with specialist nurse practitioners, university‐based researchers (with a clinical background in stroke and dementia…

Abstract

Co‐constructed Inquiry has been built in partnership with specialist nurse practitioners, university‐based researchers (with a clinical background in stroke and dementia care) and people living with long‐term conditions. Co‐constructed Inquiry introduces the language of drama and theatre into the theory building and reporting process and consists of three stages: Building the set; Performing the production; and Bringing down the curtain. People with long‐term conditions represent subjective experience through the production of a life story script, a personal theory and, eventually, a collective theory. The personal theory is usually presented as a diagram, or a series of diagrams. Co‐constructed Inquiry sheds new light on participative methods of inquiry and in the development of co‐constructed grounded theory.

Details

Quality in Ageing and Older Adults, vol. 8 no. 2
Type: Research Article
ISSN: 1471-7794

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Article
Publication date: 15 September 2010

Vivienne Davies‐Quarrell, Alan Higgins, Joan Higgins, Pat Quinn, Mo Quinn, Gary Jones, Linda Jones, Anthony Foy, Vilma Foy, Robert Marland, Pat Marland, Adrienne Powell and John Keady

This article describes the evaluation of the ACE club, a service for younger people with dementia in North Wales. The evaluation was conducted by the ACE club members and…

Abstract

This article describes the evaluation of the ACE club, a service for younger people with dementia in North Wales. The evaluation was conducted by the ACE club members and conducted through a relationship‐centred approach expressed through the Senses Framework (achievement, belonging, continuity, purpose, security, significance) (Nolan et al, 2006). Members of the ACE club found the sense of significance to be the most important and meaningful ‘sense’ in helping to structure their evaluation and use of the ACE club. The clinical interventions outline is shared within the text to help provide a grounded and inductively generated practice structure. The funding of ‘normalising’ activities for younger people with dementia is an area of dementia care that needs urgent attention.

Details

The Journal of Mental Health Training, Education and Practice, vol. 5 no. 3
Type: Research Article
ISSN: 1755-6228

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Article
Publication date: 15 September 2010

John Keady

Abstract

Details

The Journal of Mental Health Training, Education and Practice, vol. 5 no. 3
Type: Research Article
ISSN: 1755-6228

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Article
Publication date: 2 September 2014

Jacqueline Kindell, Simon Burrow, Ray Wilkinson and John David Keady

Life story work has a relatively long tradition in the caring sciences and is recognised as an important component of dementia care and practice. However, to date, there…

Abstract

Purpose

Life story work has a relatively long tradition in the caring sciences and is recognised as an important component of dementia care and practice. However, to date, there has not been a review of accessible life story resources. The paper aims to discuss these issues.

Design/methodology/approach

Following a systematic approach to identification and inclusion, 11 life story resources were reviewed to ascertain areas of commonality and divergence between the materials.

Findings

The authors were able to group the analysis under eight areas and at the end of this process, it was uncertain if life story work is a formal staff intervention or an informal activity that people with dementia and their families could engage in. Resources also varied in terms of whether the life story information was organised in a chronological way, or with topics of interest/discussion or with a combination of both. Life story evaluation and its impact on the life of the person with dementia is in need of development.

Practical implications

Across the resources the authors identified four reasons to do life story work which the authors have named as: emotional connections; interactional connections; building new connections and practical care connections.

Social implications

There was limited guidance aimed at helping people with dementia to develop and compile their own life story.

Originality/value

This paper provides new insights into the usefulness, future directions and content of life story resources in dementia care. It will be of interest to those in health and social care as well as people living with dementia.

Details

Quality in Ageing and Older Adults, vol. 15 no. 3
Type: Research Article
ISSN: 1471-7794

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Article
Publication date: 2 September 2014

Pamela Roach, John David Keady and Penny Bee

Standards of care and care pathways for younger people with dementia vary greatly, making clinical development and service planning challenging. Staff working in dementia…

Abstract

Purpose

Standards of care and care pathways for younger people with dementia vary greatly, making clinical development and service planning challenging. Staff working in dementia services identify that they use biographical knowledge of families to influence clinical decision making. This information is not collected or implemented in a formal manner; highlighting an important knowledge-practice gap. The paper aims to discuss these issues.

Design/methodology/approach

The development of a family-centred assessment for use in dementia care has three core components: first, thematic development from qualitative interviews with younger people with dementia and their families; second, clinical input on a preliminary design of the tool; and third, feedback from an external panel of clinical and methodological experts and families living with young-onset dementia.

Findings

The 12-item Family Assessment in Dementia (Family-AiD) tool was developed and presented for clinical use. These 12 questions are answered with a simple Likert-type scale to determine areas of unmet need and identify where families may need additional clinical support. Also included is a series of open-ended questions and a biographical timeline designed to assist staff with the collection and use of biographical and family functioning information.

Originality/value

A dementia-specific clinical family assessment tool, which also collects background biographical data on family units may be a useful way to document information; inform clinical decision making; and address otherwise unmet needs. Family-AiD has potential to improve clinical care provision of people with dementia and their families. Evaluation of the feasibility and acceptability of its implementation in practice are now required.

Details

Quality in Ageing and Older Adults, vol. 15 no. 3
Type: Research Article
ISSN: 1471-7794

Keywords

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