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 ‘This is Killing me Inside’: The Impact of Having a Parent with Young-Onset Dementia

Dementia ◽  
2017 ◽  
Vol 18 (3) ◽  
pp. 1089-1107 ◽  
Author(s):  
Helen J Aslett ◽  
Jaci C Huws ◽  
Robert T Woods ◽  
Joanne Kelly-Rhind
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Service Providers ◽  
Phenomenological Analysis ◽  
Parent Support ◽  
Young Onset ◽  
Roles And Responsibilities ◽  
Affected Parent ◽  
Young Onset Dementia ◽  
The Impact ◽  
Depth Interviews

This study explored the experience of young adults having a parent with young-onset dementia. In-depth interviews were undertaken with five participants aged between 23 and 36 years of age and these were analysed using interpretative phenomenological analysis. Participants were found to experience a number of stresses in relation to their parent’s illness, many of which were linked to loss and guilt. Five main themes were identified related to relationship changes, shifts in roles and responsibilities, support for the non-affected parent, support for self and the impact of living with their own potential risk of dementia. These findings are discussed in relation to the existing literature and suggest that individuals with a parent with young-onset dementia have needs which service providers should consider in the wider context of young-onset dementia care.

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.

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.

The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study

2016 ◽  
Vol 24 (6) ◽  
pp. 467-474 ◽  
Author(s):  
Joany K. Millenaar ◽  
Marjolein E. de Vugt ◽  
Christian Bakker ◽  
Deliane van Vliet ◽  
Yolande A.L. Pijnenburg ◽  
...  
Keyword(s):  
Late Onset ◽  
Informal Caregivers ◽  
Young Onset ◽  
Young Onset Dementia ◽  
The Impact ◽  
Late Onset Dementia

O1.06: The impact of young onset dementia on caregivers compared to late onset dementia: Results from the NeedYD study

2014 ◽  
Vol 5 ◽  
pp. S46 ◽  
Author(s):  
J.K. Millenaar ◽  
M.E. de Vugt ◽  
C. Bakker ◽  
D. van Vliet ◽  
Y.A.L. Pijnenburg ◽  
...  
Keyword(s):  
Late Onset ◽  
Young Onset ◽  
Young Onset Dementia ◽  
The Impact ◽  
Late Onset Dementia

Constraints and ethical tensions in the area of young-onset dementia

2019 ◽  
Vol 28 (21) ◽  
pp. 1380-1386
Author(s):  
Caroline Kilty ◽  
Corina Naughton ◽  
Aine de Roiste
Keyword(s):  
Health Professionals ◽  
Interpretative Phenomenological Analysis ◽  
Qualitative Interviews ◽  
Models Of Care ◽  
Community Services ◽  
Young Onset ◽  
Timely Diagnosis ◽  
Person Following ◽  
Health And Social Care ◽  
Young Onset Dementia

Background: young-onset dementia (under age 65) varies in many respects to typical aged dementia. Health professionals are centrally involved in supporting individuals and families to cope with the unique challenges that young-onset dementia (YOD) brings. Aims: this study aimed to explore professionals' perceptions of the key challenges faced by people living with YOD and their families, and how they provide support to this group. Methods: qualitative interviews were conducted with nine health professionals from a range of health and social care contexts. Data were analysed using interpretative phenomenological analysis. Findings: interviewees reported significant challenges in trying to enact support for people with YOD, and families. Particular challenges relate to delays in accessing timely diagnosis, and difficulty in accessing relevant, age-appropriate supports. Interviewees experienced ethical tensions working in this area; interviewees were keen to enact support for the person following diagnosis, but felt constrained by service options that were not relevant or readily accessible to the person, and in some instances, traditional dementia services added to, rather than lessened the stress experienced by those involved. Conclusion: dementia and health services should be cognisant of the unique challenges of YOD, and models of service provision should aim to respond accordingly. Nurses and other health professionals should be afforded the necessary structures to support people living with YOD. This relates to dedicated YOD models of care, specifically timely diagnosis, post-diagnosis support and community services that enhance personhood and resilience.

scholarly journals Places Visited, Maintained, or Abandoned Outside Home: A Community Mobility Need of Older Adults With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 673-673
Author(s):  
Isabel Margot-Cattin ◽  
Sophie Gaber ◽  
Nicolas Kuhne ◽  
Camilla Malinowski ◽  
Louise Nygard
Keyword(s):  
Older Adults ◽  
Cognitive Decline ◽  
Health Condition ◽  
Driving Cessation ◽  
Age In Place ◽  
Community Mobility ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Abstract For older adults to “age in place”, they need to keep engaged and mobile in their communities, whatever their health condition. The impact of age and cognitive decline on community mobility is a growing problem in Europe and worldwide. Engaging in occupations outside home implies being able to get to those places where activities are performed. Yet little is known regarding the types of places visited, maintained or abandoned for older adults with/without dementia. This study addresses community mobility needs through the places people visit, maintain or abandon. People with and without dementia, aged 55+, were interviewed using the Participation in ACTivities and Places OUTside the Home (ACT-OUT) questionnaire across Switzerland (n=70), Sweden (n=69) and the UK (n=128). Results show that people with dementia experience a higher rate of abandonment for more places than regular older adults. Insights about driving cessation and access to travel passes will be presented.

scholarly journals The value of psychiatrists in leadership and management

2016 ◽  
Vol 22 (4) ◽  
pp. 263-268 ◽  
Author(s):  
Jennifer Perry ◽  
Fiona L. Mason
Keyword(s):  
Social Care ◽  
Self Awareness ◽  
Management Styles ◽  
Leadership And Management ◽  
Health And Social Care ◽  
The Uk ◽  
Medical Leadership ◽  
The Impact ◽  
Organisational Level

SummaryThe health and social care landscape in the UK is changing, and there is now, more than ever, a real need for doctors to embrace leadership and management. Evidence shows that medical leadership is associated with better outcomes for patients. Psychiatrists are particularly well suited to such roles, given the interpersonal skills and self-awareness that they develop in their training. In this article, we examine the role of the psychiatrist in leading at a patient, team and organisational level and the impact this has. We also discuss different leadership and management styles.

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.

The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study

2013 ◽  
Vol 26 (12) ◽  
pp. 2001-2010 ◽  
Author(s):  
Joany K. Millenaar ◽  
Deliane van Vliet ◽  
Christian Bakker ◽  
Myrra J. F. J. Vernooij-Dassen ◽  
Raymond T. C. M. Koopmans ◽  
...  
Keyword(s):  
Coping Styles ◽  
Specific Information ◽  
Structured Interviews ◽  
Specific Knowledge ◽  
Young Onset ◽  
Care And Support ◽  
Young Parent ◽  
Young Onset Dementia ◽  
The Impact ◽  
Family Centered

ABSTRACTBackground:Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs.Methods:Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes.Results:The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services.Conclusion:In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

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