scholarly journals The use of Twitter by people with young-onset dementia: A qualitative analysis of narratives and identity formation in the age of social media

Dementia ◽  
2021 ◽  
pp. 147130122110024
Author(s):  
Catherine V Talbot ◽  
Siobhan T O’Dwyer ◽  
Linda Clare ◽  
Janet Heaton
Keyword(s):  
Social Media ◽  
Identity Formation ◽  
Hostile Environment ◽  
Young Onset ◽  
Community Membership ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Young Onset Dementia ◽  
Analysis Of Narratives ◽  
Diagnostic Support

A diagnosis of dementia in midlife can be challenging, causing losses or changes in a person’s identity. Narrative provides a means of reconstructing identity and can be communicated on social media. There has been initial evidence on the value of Twitter for people with dementia, but researchers have not yet directly engaged with users’ perspectives. We employed a narrative model of identity to examine why people with dementia use Twitter and what challenges they face. Interviews were conducted with 11 younger people with dementia and analysed thematically. Participants used Twitter to counter a loss of identity through community membership and by regaining a sense of purpose. They sought to redefine dementia identities by challenging stigma and campaigning for social change. The character limit of tweets facilitated narrative through which participants preserved their identities. These findings suggest that Twitter could be an important source of post-diagnostic support for people with young-onset dementia. However, there are some risks as Twitter was sometimes a hostile environment for individuals who did not present in a ‘typical’ manner, or faced technical difficulties because of their symptoms. In the future, platform developers could work with people with dementia to make Twitter more accessible for this group.

scholarly journals Driving Cessation in Patients Attending a Young-Onset Dementia Clinic: A Retrospective Cohort Study

2018 ◽  
Vol 8 (1) ◽  
pp. 190-198 ◽  
Author(s):  
Latha Velayudhan ◽  
Sarah Baillon ◽  
Gabriela Urbaskova ◽  
Laura  McCulloch ◽  
Samuel  Tromans ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Female Gender ◽  
University Teaching ◽  
Mediation Effect ◽  
Health Concern ◽  
Driving Cessation ◽  
Factors Affecting ◽  
Young Onset ◽  
People With Dementia ◽  
Young Onset Dementia

Background: Although driving by persons with dementia is an important public health concern, little is known about driving cessation in younger people with dementia. We aimed to determine the prevalence and factors affecting driving cessation in individuals with and without dementia aged under 65 years attending a memory clinic in a European setting. Methods: Subjects were consecutive patients assessed at a specialist memory service at a university teaching hospital between 2000 and 2010. The data collected included demographic, clinical, standardized cognitive assessments as well as information on driving. Dementia diagnosis was made using ICD-10 criteria. Results: Of the 225 people who were or had been drivers, 32/79 (41%) with young-onset dementia (YOD) stopped driving compared to 25/146 (17%) patients who had cognitive impairment due to other causes. Women were more likely to cease driving and voluntarily than men (p < 0.001). Diagnosis of YOD was associated with driving cessation (1.193, 95% CI 0.570–1.815, p ≤ 0.001), and was mediated by impairment in praxis with the highest indirect mediation effect (0.754, 95% CI 0.183–1.401, p = 0.009). Conclusions: YOD diagnosis, female gender, and impairment in praxis have a higher probability for driving cessation in those under 65 years of age with cognitive impairment.

Developing dementia: The existential experience of the quality of life with young-onset dementia – A longitudinal case study

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 878-893 ◽  
Author(s):  
Kirsten Thorsen ◽  
Marcia Cristina Nascimento Dourado ◽  
Aud Johannessen
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Single Individual ◽  
Longitudinal Case Study ◽  
Young Onset ◽  
People With Dementia ◽  
Treatment Support ◽  
Young Onset Dementia

BackgroundCognition and the ability to take care of daily activities and oneself gradually declines among people with dementia. Studies are scarce, especially regarding how people with young-onset dementia (YOD) (<65 years) experience the quality of their lives with the progression of dementia. People with dementia living alone face special challenges.AimTo examine the experience of the quality of life with YOD as a single person.MethodThe study presents a longitudinal case study with in-depth interviews exploring the experiences of a person with YOD. Individual interviews were conducted seven times over a period of three years from 2014 to 2017.FindingsWe examined if and how seven themes concerning the quality of life and well-being were fruitful for understanding the experiences of dementia in the everyday life of a single individual. The study explored needs and challenges during the development of dementia, and how the person reacted over time, set in context. The themes significant for well-being are: identity, connectedness, security, autonomy, meaning, growth and joy.ConclusionThe study shows how treatment, support, and services must be individualized when dementia develops in order to support identity, resources and mastering capacity, and promote well-being.

Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

2019 ◽  
Vol 33 (9) ◽  
pp. 1166-1175 ◽  
Author(s):  
Romy Van Rickstal ◽  
Aline De Vleminck ◽  
Melissa D Aldridge ◽  
Sean R Morrison ◽  
Raymond T Koopmans ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Advance Care Planning ◽  
Quality Care ◽  
Third Party ◽  
Care Planning ◽  
Structured Interviews ◽  
Young Onset ◽  
People With Dementia ◽  
Advance Care ◽  
Young Onset Dementia

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers’ preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews ( n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants’ limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients’ cognitive competence. However, endorsement for advance care planning showed from respondents’ preferences that it should be initiated timely, by a third party, and emphasize patients’ remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

‘We can't keep going on like this’: identifying family storylines in young onset dementia

2013 ◽  
Vol 34 (8) ◽  
pp. 1397-1426 ◽  
Author(s):  
PAMELA ROACH ◽  
JOHN KEADY ◽  
PENNY BEE ◽  
SION WILLIAMS
Keyword(s):  
Narrative Analysis ◽  
Family Members ◽  
Supportive Services ◽  
Family Experience ◽  
Young Onset ◽  
Narrative Design ◽  
Everyday Lives ◽  
People With Dementia ◽  
Young Onset Dementia

ABSTRACTIn this study, we identify the dominant storylines that were embedded in the narratives of younger people with dementia and their nominated family members. By implementing a longitudinal, narrative design underpinned by biographical methods we generated detailed family biographies with five families during repeated and planned research contacts (N=126) over a 12–15-month period between 2009 and 2010. The application of narrative analysis within and between each family biography resulted in the emergence of five family storyline types that were identified as: agreeing; colluding; conflicting; fabricating; and protecting. Whilst families were likely to use each of these storylines at different points and at different times in their exposure to young onset dementia, it was found that families that adopted a predominantly ‘agreeing’ storyline were more likely to find ways of positively overcoming challenges in their everyday lives. In contrast, families who adopted predominantly ‘conflicting’ and ‘colluding’ storylines were more likely to require help to understand family positions and promote change. The findings suggest that the identification of the most dominant and frequently occurring storylines used by families may help to further understand family experience in young onset dementia and assist in planning supportive services.

scholarly journals Understanding the needs and experiences of people with young onset dementia: a qualitative study

BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e021166 ◽  
Author(s):  
Luisa I Rabanal ◽  
John Chatwin ◽  
Andy Walker ◽  
Maria O’Sullivan ◽  
Tracey Williamson
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Help Seeking ◽  
Late Onset ◽  
Psychological Impact ◽  
Young Onset ◽  
People With Dementia ◽  
Health And Social Care ◽  
Young Onset Dementia ◽  
The Uk ◽  
The Impact

AimDespite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.SettingParticipants’ homes, support group premises or university rooms.Participants14 people with a diagnosis of YOD from a northern UK city.DesignSemistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.ResultsFour superordinate themes are reported on ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘living well with YOD’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.ConclusionsPeople who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

scholarly journals Patients with young-onset dementia in an older people's mental health service

2020 ◽  
pp. 1-5
Author(s):  
Michael Yeung ◽  
Katherine MacFarland ◽  
Vincent Mlilo ◽  
Nathan Dean ◽  
Benjamin R. Underwood
Keyword(s):  
Late Onset ◽  
Rare Condition ◽  
Service Level ◽  
Case Review ◽  
Young Onset ◽  
Dementia Patients ◽  
Level Data ◽  
Diagnosis Of Dementia ◽  
Young Onset Dementia ◽  
Late Onset Dementia

Aims and method Currently, no separate service exists for patients with young-onset dementia in Cambridgeshire. These patients are managed together with late-onset dementia patients within old age psychiatry services. To inform service design, we sought to characterise young-onset dementia patients in our population. We first analysed service-level data and supplemented this with a detailed case review of 90 patients. Results Young-onset dementia remains a relatively rare condition. Only a small proportion of those referred for assessment receive a diagnosis of dementia. Data collected on presenting complaints, comorbidities, medication and Health of the Nation Outcome Scales scores associated young-onset dementia with a greater incidence of depression than late-onset dementia. Outcomes in the two groups did not appear to differ. Clinical implications The data presented here do not suggest a need to create a separate service. Practitioners should be aware of the increased incidence of depression observed in this group.

The impact of young onset dementia on the family: a literature review

2010 ◽  
Vol 23 (3) ◽  
pp. 356-371 ◽  
Author(s):  
Emma Svanberg ◽  
Aimee Spector ◽  
Joshua Stott
Keyword(s):  
Literature Review ◽  
Literature Search ◽  
Service Development ◽  
Systematic Literature Search ◽  
Young Onset ◽  
People With Dementia ◽  
The Family ◽  
Young Onset Dementia ◽  
The Individual ◽  
The Impact

ABSTRACTBackground: The needs of younger people with dementia have become increasingly recognized in service development. However, little is known about the impact of a diagnosis of young onset dementia on people aged under 65 years and their families. This paper reviews the literature on the experiences of younger people with dementia and their families in the U.K., and outcomes for carers.Methods: Twenty-six studies, encompassing a variety of themes concerning this population, were reviewed following a systematic literature search.Results: Results are divided into the impact on the individual and the impact on the family, specifically carer outcomes and the impact on children.Conclusions: The studies reviewed reveal a number of negative outcomes for the individual and carers, and highlight the need for further research.

scholarly journals The nature of positive post-diagnostic support as experienced by people with young onset dementia

2020 ◽  
pp. 1-9
Author(s):  
Vasileios Stamou ◽  
Jenny La Fontaine ◽  
Mary O’Malley ◽  
Bridget Jones ◽  
Heather Gage ◽  
...  
Keyword(s):  
Young Onset ◽  
Young Onset Dementia ◽  
Diagnostic Support

scholarly journals Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice

Dementia ◽  
2020 ◽  
pp. 147130122096926
Author(s):  
Mary O’Malley ◽  
Jacqueline Parkes ◽  
Jackie Campbell ◽  
Vasileios Stamou ◽  
Jenny LaFontaine ◽  
...  
Keyword(s):  
United Kingdom ◽  
Patient Experience ◽  
Scoping Review ◽  
Personal Experience ◽  
Diagnostic Process ◽  
Young Onset ◽  
The United Kingdom ◽  
Delphi Approach ◽  
People With Dementia ◽  
Young Onset Dementia

Introduction Better understanding of patient experience is an important driver for service improvements and can act as a lever for system change. In the United Kingdom, the patient experience is now a central issue for the National Health Service Commissioning Board, clinical commissioning groups and the providers they commission from. Traditionally, dementia care in the United Kingdom has focused predominantly on the individual experience of those with late onset dementia, while the voice of those with young onset dementia has been, comparatively, unheard. This study aims to improve the understanding of the personal experience of younger people undergoing investigation for dementia. Methods A modified Delphi approach was undertaken with 18 younger people with dementia and 18 supporters of people with young onset dementia. Questions were informed by a scoping review of the literature (O’Malley, M., Carter, J., Stamou, V., Lafontaine, J., & Parkes, J. (2019a). Receiving a diagnosis of young onset dementia: A scoping review of lived experiences. Ageing & Mental Health, 0(0), 1-12). Summary individual statements were refined over two rounds to a final list of 29 key statements. Results Twenty-seven of these statements were rated as absolutely essential or very important and included (1) for the general practitioner to identify dementia in younger people, (2) clinicians should be compassionate, empathic and respectful during the assessment and particularly sensitive when providing information about a diagnosis, and (3) remembering that receiving the diagnosis is a lot to absorb for a person with dementia and their supporter. Statistical analyses found no difference in the scoring patterns between younger people with dementia and supporters, suggesting similar shared experiences during the diagnostic process. Conclusion Understanding the uniquely personal experience of young people going through the process of diagnosis for dementia is essential to provide person-centred, needs-led, and cost-effective services. Patient’s values and experiences should be used to support and guide clinical decision-making.

Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies

2017 ◽  
Vol 30 (6) ◽  
pp. 807-831 ◽  
Author(s):  
Lee-Fay Low ◽  
Kate Swaffer ◽  
Margaret McGrath ◽  
Henry Brodaty
Keyword(s):  
Early Stage ◽  
Qualitative Studies ◽  
Subjective Experiences ◽  
Self Identity ◽  
Slowing Down ◽  
People With Dementia ◽  
Early Dementia ◽  
Diagnosis Of Dementia ◽  
Person With Dementia ◽  
Diagnostic Support

ABSTRACTBackground:Prescribed Disengagement® is the description of the post-diagnostic advice given to people after a diagnosis of dementia, which explicitly or implicitly suggests that the person should be slowing down or pulling back from activities. This results in isolation, loss of hope, self-esteem and self-identity, and threatens social health. This study aims to review whether Prescribed Disengagement® can be identified in the literature on subjective experiences of people living with early dementia.Methods:A systematic search was performed. Inclusion criteria were original empirical qualitative studies published in English that addressed the subjective experiences of living with a diagnosis of objectively defined early dementia. Thematic synthesis was undertaken.Results:Thirty-five papers involving 373 participants were included. Following a diagnosis, people with dementia struggled with self-identity, independence, control and status, activities, stigma, and how to view the future. Reactions in these areas ranged from active and positive to negative and passive. Many studies reported participants’ dissatisfaction with the way the diagnosis was communicated. There was insufficient information provided about dementia and limited treatments and support offered. The diagnosis process and post-diagnostic support may have contributed to disempowerment of the person with dementia, made it more difficult to accept the diagnosis, and exacerbated negative views and self-stigma around dementia.Conclusions:These results do not support the idea of Prescribed Disengagement®. However disengagement may have been implied during the diagnosis process and post-diagnostic support. Research is needed on how to improve the communication of dementia diagnosis and support people to live well post-diagnosis.

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