Handbags and glad rags: preserving identity in dementia

2019 ◽  
Vol 13 (5) ◽  
pp. 219-225
Author(s):  
Maggie Parry-Hughes ◽  
Karen Harrison Dening
Keyword(s):  
Sense Of Self ◽  
Presentation Of Self ◽  
Related Literature ◽  
People With Dementia ◽  
Self And Identity ◽  
Diagnosis Of Dementia ◽  
Person With Dementia ◽  
Significant Factors

This article considers to what extent a person with dementia can maintain their sense of self and identity following diagnosis of dementia. The authors discuss identity in the context of dementia and illustrate this through the use of a hypothesised case study of a woman with a diagnosis of dementia. Theories and approaches that recognise and maintain identity and presentation of self, within the context of dress and accessories, and interactions with others, are discussed.Analysis of the related literature indicates that, given the necessary resources, people with dementia can live meaningful, purposeful lives, when supported to protect and preserve their identity.The environment and the role of ‘others’ are significant factors in maintaining the identity and individuality of a person with dementia.

scholarly journals Photo-Elicited Conversations about Therapy Dogs as a Tool for Engagement and Communication in Dementia Care: A Case Study

Animals ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. 820
Author(s):  
Lena Nordgren ◽  
Margareta Asp
Keyword(s):  
Sense Of Self ◽  
Dementia Care ◽  
Inner Life ◽  
Therapy Dog ◽  
Video Recordings ◽  
People With Dementia ◽  
Video Observations ◽  
Person With Dementia

Understanding the inner life of people with dementia can be challenging and there is a need for new and different approaches. Previous research shows that people with dementia can experience emotions such as harmony, closeness, and joy as well as sadness and concern when interacting with a therapy dog. Simultaneously, memories of past episodes are brought back to life when the person interacts with the dog. This raises questions about whether photos of interaction with a dog can evoke memories or support people with dementia in communicating emotions in a corresponding way. The aim of this study was to explore photo-elicited conversations as a tool for engagement and communication in dementia care. Repeated video observations of photo-elicited conversations between a woman with dementia and a dog handler/assistant nurse were used to collect data. The video recordings were analyzed with a phenomenological hermeneutical method. The role of photo-elicited conversations as a tool for engagement and communication in dementia care is that the conversations can help the person with dementia to feel a sense of being situated and recall feelings of liveliness and belongingness, and thus supporting the person’s sense of self. The results can be used to deepen nursing staff’s understanding of using photo-elicited conversations in dementia care.

scholarly journals Dementia in the workplace case study research: understanding the experiences of individuals, colleagues and managers

2017 ◽  
Vol 38 (10) ◽  
pp. 2146-2175 ◽  
Author(s):  
LOUISE RITCHIE ◽  
DEBBIE TOLSON ◽  
MIKE DANSON
Keyword(s):  
Case Study Research ◽  
Negative Consequences ◽  
Policy And Practice ◽  
Study Research ◽  
Organisational Support ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Person With Dementia ◽  
Continued Employment

ABSTRACTThis article reports case study research which addresses the gap in knowledge about dementia in the workplace. Receiving a diagnosis of dementia whilst still in employment may have negative consequences for a person's identity, further compounded by loss of employment. This study is the first to explore the employment-related experiences of people with dementia and their employers to determine the potential for continued employment post-diagnosis. Sixteen case studies centred on a person with dementia who was still in employment or had left in the previous 18 months. Each involved interviews with the person with dementia, a family member and a workplace representative. This triangulation of the data promoted rigour, allowing the experiences to be viewed through a variety of lenses to build a clear picture of each situation. Thematic analysis was carried out and three themes were developed: (a) dementia as experienced in the workplace; (b) work keeps me well; and (c) wider impact of dementia in the workplace. These findings have the potential to initiate changes to policy and practice related to supporting employees with dementia. The implications of this research are multifaceted and need to be considered in terms of the individuals’ wellbeing, organisational support, as well as the wider theoretical, economic and societal consequences of supporting an employee with dementia.

Person- and relationship-centred dementia care

2020 ◽  
pp. 233-248
Author(s):  
John Keady ◽  
Mike Nolan
Keyword(s):  
Life Story ◽  
Care Home ◽  
Theoretical Development ◽  
People With Dementia ◽  
Global Issue ◽  
Diagnosis Of Dementia ◽  
Working Together ◽  
The Senses ◽  
Story Work ◽  
Person With Dementia

Dementia is a global issue experienced on an individual and relational level. This chapter traces the emergence of both person-centred care and relationship-centred care, with the latter approach expressed through the Senses Framework. The Framework outlines the theoretical development and practical application of the Senses [security, belonging, continuity, purpose, achievement, significance] and highlights the importance of staff, carer, and [in this chapter] person with dementia all working together. This chapter describes the application of the Senses Framework to a recent practice development study set in a care home for people with dementia and shows how the study used a combination of the Senses and life story work to create an ‘enriched’ environment. The chapter concludes with a discussion about how the Senses can be used to facilitate an early diagnosis of dementia and to help people with dementia and their families to engage with a life ‘outside the front door’, termed ‘The Neighbourhood Space’.

Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis

Dementia ◽  
2017 ◽  
Vol 18 (4) ◽  
pp. 1427-1445 ◽  
Author(s):  
Barbara K Sharp
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Phenomenological Analysis ◽  
People With Dementia ◽  
Health And Social Care ◽  
Self Worth ◽  
And Coping ◽  
Study Participants ◽  
Person With Dementia ◽  
The Impact

Health and social care research on stress in dementia has predominantly considered the stress experienced by family and professional carers. Focus on the person with dementia has frequently laid emphasis on the impact of stress-related behaviour on others and how such behaviour might be ‘managed’. This paper describes a qualitative study which gives voice to people with dementia on the subject of stress and responds to the need for a better understanding of stress as it is experienced by people with dementia themselves. An interpretative phenomenological analysis was conducted on data collected from a purposive sample of people diagnosed with varying types of dementia from across Scotland. Discussions across five focus groups consisting of 21 participants with dementia in total generated data which was audio and video recorded, and analysed thematically. Five key themes emerged, described in the participants’ own words, which were: (1) ‘Something’s torn, your life’s torn’; (2) ‘Families can bring stress’; (3) ‘It’s the stress of living with dementia’; (4) ‘A whole new set of rules’; and (5) ‘It’s our lives and we’ll get it under control ourselves’. These themes reflect experiences of loss, challenges to one’s sense of self, relationship dynamics, living with the symptoms of dementia, learning to do things differently and establishing coping mechanisms that provide control. Study participants illustrated individual potential for adapting and coping with some of the most stressful aspects of living with dementia, challenging assumptions of inevitable fixed decline and progressive vulnerability to stress. Participants describe a process of recovery in their perceptions of self-worth, purpose and value in life following diagnosis.

scholarly journals Recruiting hard to reach populations to studies: breaking the silence: an example from a study that recruited people with dementia

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e030829
Author(s):  
Becky Field ◽  
Gail Mountain ◽  
Jane Burgess ◽  
Laura Di Bona ◽  
Daniel Kelleher ◽  
...  
Keyword(s):  
Secondary Analysis ◽  
Future Research ◽  
Specific Population ◽  
Research Experiences ◽  
Multiple Strategies ◽  
Successful Recruitment ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Hard To Reach Populations ◽  
Person With Dementia

ObjectiveTo share the challenges of recruiting people with dementia to studies, using experiences from one recently completed trial as an exemplar.BackgroundResearch publications always cite participant numbers but the effort expended to achieve the sample size is rarely reported, even when the study involved recruiting a hard to reach population. A multisite study of a psychosocial intervention for people with dementia illustrates the challenges. This study recruited 468 ‘dyads’ (a person with dementia and a family carer together) from 15 sites but the time taken to achieve this was longer than originally estimated. This led to a study extension and the need for additional sites. Recruitment data revealed that certain sites were more successful than others, but why? Can the knowledge gained be used to inform other studies?MethodsSecondary analysis of routinely collected recruitment data from three purposefully selected sites was examined to understand the strategies used and identify successful approaches.FindingsAt all three sites, the pool of potential recruits funnelled to a few participants. It took two sites 18 months longer than the third to achieve recruitment numbers despite additional efforts. Explanations given by potential participants for declining to take part included ill health, reporting they were ‘managing’, time constraints, adjusting to a diagnosis of dementia and burden of study procedures.ConclusionsSuccessful recruitment of people with dementia to studies, as one example of a hard to reach group, requires multiple strategies and close working between researchers and clinical services. It requires a detailed understanding of the needs and perspectives of the specific population and knowledge about how individuals can be supported to participate in research. Experiences of recruitment should be disseminated so that knowledge generated can be used to inform the planning and implementation of future research studies.

Ethical aspects of researching subjective experiences in early-stage dementia

2011 ◽  
Vol 18 (5) ◽  
pp. 651-661 ◽  
Author(s):  
Hanna-Mari Pesonen ◽  
Anne M Remes ◽  
Arja Isola
Keyword(s):  
Early Stage ◽  
Family Members ◽  
Subjective Experiences ◽  
Ethical Aspects ◽  
People With Dementia ◽  
The Family ◽  
Research Interviews ◽  
Conducting Research ◽  
Person With Dementia

This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members.

The Emergence of the Person in Dementia Research

1997 ◽  
Vol 17 (5) ◽  
pp. 597-607 ◽  
Author(s):  
MURNA DOWNS
Keyword(s):  
Support Groups ◽  
Sense Of Self ◽  
Medical Model ◽  
Disease Process ◽  
People With Dementia ◽  
Dementia Research ◽  
The Individual ◽  
And Coping ◽  
Person With Dementia ◽  
The Impact

The purpose of this review is to identify and explore the emerging attention being paid to the individual in dementia research. Following a brief introduction, the review will examine literature which recognises three aspects of the person with dementia: the individual's sense of self; the person's rights; and the value to be gained from a concern with the perspectives of people with dementia. To date the medical model has dominated dementia research. This model tends to reduce the person with dementia to his/her neurobiology or neuropsychology (Cotrell and Schulz 1993). The experience and manifestation of dementia has been attributed solely to the disease process, with a consequent neglect of the psychosocial context surrounding the individual (Lyman 1989). Research on the psychosocial aspects of dementia has concentrated on family carers. Keady (1996) provides a useful categorisation of this research into the following topics: gender and coping style; marital relationships and the impact of dementia; access to information and services; participation in and effectiveness of support groups; adjustment and circumstances surrounding admission into care; and perception of own health needs. No literature focuses on people with dementia.

scholarly journals Notes from the hospital bedside: reflections on researcher roles and responsibilities at the end of life in dementia

2017 ◽  
Vol 18 (3) ◽  
pp. 201-211
Author(s):  
Caroline Margaret Swarbrick ◽  
Elizabeth Sampson ◽  
John Keady
Keyword(s):  
Lived Experience ◽  
End Of Life ◽  
Ethics Committees ◽  
Individual Case ◽  
Content Type ◽  
Roles And Responsibilities ◽  
Informal Carers ◽  
Person With Dementia

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.

scholarly journals Technology-Driven Solutions to Prompt Conversation, Aid Communication and Support Interaction for People With Dementia and Their Caregivers: A Systematic Literature Review

2020 ◽  
Author(s):  
Viktoria Hoel ◽  
Carine Mendom Feunou ◽  
Karin Wolf-Ostermann
Keyword(s):  
Literature Review ◽  
Social Interactions ◽  
Third Party ◽  
Small Scale ◽  
People With Dementia ◽  
Conversation Partner ◽  
Person With Dementia ◽  
The Impact ◽  
The Relationship

Abstract Background The impact of dementia on communication capabilities can result in difficulties in social interactions and between people with dementia and their conversation partner, as initiating and maintaining conversations becomes increasingly challenging. The role of technology in promoting social health and participation for people with dementia is increasing, but the usage on technological devices as a third party in social interactions to enhance communication quality is still in its infancy. The objective of this literature review is to provide a comprehensive description of technology-driven interventions for people with dementia and their conversation partners to enhance communication and facilitate positive social interactions. Methods A systematic search was conducted using PubMed, CINAHL and PsycINFO, where titles and abstracts were screened by two researchers independently. The reference lists of initially identified papers were hand-searched for further relevant studies. Quality appraisal of the included studies was assessed using the Mixed Methods Appraisal Tool.Results Twenty-six papers were included., where the most common technologies to facilitate communication and interactions were tablet-computers (n=11), social robots (n=7) and PCs (n=4). By analyzing the impacts of the device(s) on social interaction and communication, five major themes emerged: i) increased interaction; ii) better understanding of the person with dementia; iii) improved conversational quality; iv) reducing pressure on the conversation partner; and v) a conversational platform.Conclusion While the majority of the included studies are small-scale, they indicate promising findings on the potential of technology in helping dyads to interact in a way that relieves strain on the caregiver, enhances the relationship and engages people with dementia in social activities. Rigorous investigation using standard, comparable measurements is needed to demonstrate the effects of technological solutions, taking on the perspective on caregiving dyads as an entity rather than looking at outcomes for one member of the dyad in isolation.

Exploring Boundaries to the Benefits of Lifelogging for Identity Maintenance for People with Dementia

2016 ◽  
pp. 213-227
Author(s):  
Paulina Piasek ◽  
Kate Irving ◽  
Alan F. Smeaton
Keyword(s):  
New Technologies ◽  
Memory Loss ◽  
Digital Camera ◽  
Identity Maintenance ◽  
Image Recording ◽  
People With Dementia ◽  
Number Of Factors ◽  
Descriptive Approach ◽  
Person With Dementia

In the absence of a medical cure for some forms of memory loss caused by dementia, new technologies specialised in pervasive image recording are being incorporated into practical interventions. Lifelogging is the digital capture of life experiences typically using mobile devices such as SenseCam. This lightweight wearable digital camera passively captures up to 3,000 images a day. Lifelogging results in personal, recent visual prompts, potentially encouraging the sharing of personal memories. The authors' research investigated the incorporation of lifelogging technology into a therapeutic approach to support people with dementia by using the case study method, an exploratory and descriptive approach. SenseCam therapy aimed to stimulate the cognition of a person with dementia, with maintenance of their personal identity as its primary goal. There is limited literature on practical recommendations on how to use lifelogging devices and their effect on people with dementia. The results from the authors' research indicate a number of factors that should be considered when using lifelogging technology with people with dementia. This paper explores the boundaries to the benefits of using lifelogging technology for identity maintenance in dementia. Implications of not working within these boundaries show clear potential for risk of undermining the human rights and potentially the wellbeing of people with dementia.

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