Young onset dementia service provision and its effect on service users and family members

2016 ◽  
Vol 19 (10) ◽  
pp. 15-19 ◽  
Author(s):  
Pras Ramluggun ◽  
Emakpor Ogo
Keyword(s):  
Service Provision ◽  
Family Members ◽  
Service Users ◽  
Young Onset ◽  
Young Onset Dementia

‘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.

Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

2020 ◽  
pp. 104973232097019
Author(s):  
Sheila Novek ◽  
Verena H. Menec
Keyword(s):  
Health Professionals ◽  
Family Members ◽  
Dementia Care ◽  
Organizational Level ◽  
Diagnostic Process ◽  
Structured Interviews ◽  
Young Onset ◽  
Treatment Gaps ◽  
Canadian City ◽  
Young Onset Dementia

People living with young onset dementia face significant barriers to diagnosis, resulting in delays, misdiagnoses, and treatment gaps. We examined the process of accessing and delivering a diagnosis of young onset dementia using the candidacy framework as a conceptual lens. Semi-structured interviews were conducted with six people living with dementia, 14 family members, and 16 providers in a western Canadian city. Participants’ accounts revealed the diagnosis of young onset dementia as a negotiated process involving patients, family members, and health professionals. Assumptions about age and dementia affected how participants interpreted their symptoms, how they presented to services, and how they, in turn, were perceived by providers. At the organizational level, age-restrictions, fragmentation, and unclear referral pathways further complicated the diagnostic process. Our findings lend support to the growing call for specialist young onset dementia care and point toward several recommendations to develop more age-inclusive diagnostic services.

Clinical nurse specialist's role in young-onset dementia care

2020 ◽  
Vol 25 (12) ◽  
pp. 604-609
Author(s):  
John H Spreadbury ◽  
Christopher M Kipps
Keyword(s):  
Geographic Region ◽  
Personal Contact ◽  
Service Users ◽  
Clinical Nurse ◽  
Young Onset ◽  
Nursing Role ◽  
Clinical Nurse Specialists ◽  
Care Services ◽  
Health And Social Care ◽  
Young Onset Dementia

Post-diagnostic care in young-onset dementia (YoD) varies, from something that is occasionally structured, to improvised, to frequently non-existent depending on geographic region. In a few regions in England, a nurse designated to helping families may exist. This study aimed to describe this seldom-observed nursing role and its content. It used an investigative qualitative case study design based on the analysis of two YoD clinical nurse specialists (CNSs) describing the work they did in providing post-diagnostic care to YoD service users. The CNSs address various areas affected by mid-life dementia, including patients' mental health, caregiver stress and families' psycho-social problems. They use various approaches in delivering care, including making home visits, acting as a personal contact for service users and liaising with other health and social care services. Desirable attributes of a CNS service include service users having access to the same CNS throughout their care, receiving timely care and experiencing longer-term support and reassurance. In the post-diagnostic period, service user needs are often more psycho-social than medical, and the CNS role can complement and add value to clinical appointments. The role allows service users to be managed in the community, to receive information, guidance and advice and can prevent and de-escalate problems.

scholarly journals Service provision for young-onset dementia in the UK

2015 ◽  
Vol 19 (4) ◽  
pp. 28-30 ◽  
Author(s):  
Dane Rayment ◽  
Tarun Kuruvilla
Keyword(s):  
Service Provision ◽  
Young Onset ◽  
Young Onset Dementia ◽  
The Uk

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.

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.

P2-207: Prevalence of Family History of Dementia in a Specialist Young-Onset Dementia Clinic Cohort

2016 ◽  
Vol 12 ◽  
pp. P700-P700
Author(s):  
Yang-Lin Ting ◽  
Levinia Lim ◽  
Nagaendran Kandiah ◽  
Adeline Su Lyn Ng
Keyword(s):  
Family History ◽  
Young Onset ◽  
History Of ◽  
Young Onset Dementia

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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