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 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.

Best practice for chronic oedema in community settings: what can we learn?

2020 ◽  
Vol 25 (12) ◽  
pp. 610-614
Author(s):  
Garry Cooper-Stanton
Keyword(s):  
Service Provision ◽  
Best Practice ◽  
Evidence Base ◽  
Community Services ◽  
Guidance Document ◽  
Community Settings ◽  
Tissue Viability ◽  
Delivery Of Care ◽  
Specialist Nurses ◽  
The Uk

There are various opportunities and challenges in the delivery of care to those diagnosed with chronic oedema/lymphoedema. Service provision is not consistent within the UK, and non-specialist nurses and other health professionals may be called on to fill the gaps in this area. The latest best practice guidance on chronic oedema is directed at community services that care for people within their own homes in primary care. This guide was developed in order to increase awareness, knowledge and access to an evidence base. Those involved in its creation cross specialist fields (lymphoedema and tissue viability), resulting in the document covering a number of areas, including an explanation of chronic oedema, its assessment and management and the association between chronic oedema and wet legs. The document complements existing frameworks on the condition and its management and also increases the available tools within chronic oedema management in the community. The present article provides an overview of the guidance document and discusses its salient features.

scholarly journals Perceptions of Peer Support for Victim-Survivors of Sexual Violence and Abuse: An Exploratory Study With Key Stakeholders

2021 ◽  
pp. 088626052110079
Author(s):  
Alison Gregory ◽  
Emma Johnson ◽  
Gene Feder ◽  
John Campbell ◽  
Judit Konya ◽  
...  
Keyword(s):  
Sexual Violence ◽  
Peer Support ◽  
Service Provision ◽  
Exploratory Study ◽  
Good Practice ◽  
Medical Model ◽  
Service Improvement ◽  
Physical And Mental Health ◽  
Safety Considerations ◽  
The Uk

Experiences of sexual violence, childhood sexual abuse, and sexual assault are common across all societies. These experiences damage physical and mental health, coping ability, and relationships with others. Given the breadth and magnitude of impacts, it is imperative that there are effective, accessible services to support victim-survivors, ease suffering, and empower people to cope, recover and thrive. Service provision for this population in the United Kingdom is complex and has been hit substantially by austerity. Since positive social support can buffer against negative impacts, peer support may be an effective approach. The aim of this exploratory study was to capture the views and perspectives of professional stakeholders concerning service provision for victim-survivors, particularly perceptions of peer support. In-depth semistructured interviews were conducted in the UK during 2018 with six professional stakeholders, highly experienced in the field of service provision for victim-survivors of sexual violence and abuse. An abductive approach to analysis was used, applying principles from thematic analysis. Our sample comprised four females and two males, and their roles included psychiatrist, general practitioner, service improvement facilitator, and senior positions within victim-survivor organizations. Interviews highlighted models of peer support for this population, good practice and safety considerations, and a lack of uniformity regarding quality and governance standards across the sector. Findings indicated that current funding models impact negatively on victim-survivor services, and that provision is fragmented and insufficient across statutory and not-for-profit sectors. The influence of the medical model upon service provision was evident, which resulted in apprehension around support delivered in less-usual forms—including peer support. Further research is needed to explore the potential of peer support for victim-survivors of sexual violence and abuse.

scholarly journals Development of clinical guidelines for service provision of functional electrical stimulation to support walking: mixed method exploration of stakeholder views

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
C Bulley ◽  
C Meagher ◽  
T Street ◽  
A Adonis ◽  
C Peace ◽  
...  
Keyword(s):  
Electrical Stimulation ◽  
Functional Electrical Stimulation ◽  
Clinical Guidelines ◽  
Service Provision ◽  
Clinical Guideline ◽  
Service Providers ◽  
Delphi Consensus ◽  
Stakeholder Views ◽  
Key Stakeholders ◽  
The Uk

Abstract Background Over the past 20 years Functional Electrical Stimulation (FES) has grown in clinical use to support walking in people with lower limb weakness or paralysis due to upper motor neuron lesions. Despite growing consensus regarding its benefits, provision across the UK and internationally is variable. This study aimed to explore stakeholder views relating to the value of a clinical guideline focusing on service provision of FES to support walking, how people might use it and what should be included. Methods A mixed methods exploration sought the views of key stakeholders. A pragmatic online survey (n = 223) focusing on the study aim was developed and distributed to the email distribution list of the UK Association for Chartered Physiotherapists Interested in Neurology (ACPIN). In parallel, a qualitative service evaluation and patient public involvement consultation was conducted. Two group, and seven individual interviews were conducted with: FES-users (n = 6), their family and carers (n = 3), physiotherapists (n = 4), service providers/developers (n = 2), researchers (n = 1) and distributors of FES (n = 1). Descriptive analysis of quantitative data and framework analysis of qualitative data were conducted. Results Support for clinical guideline development was clear in the qualitative interviews and the survey results. Survey respondents most strongly endorsed possible uses of the clinical guideline as ensuring best practice and supporting people seeking access to a FES service. Data analysis and synthesis provided clear areas for inclusion in the clinical guidelines, including current research evidence and consensus relating to who is most likely to benefit and optimal service provision as well as pathways to access this. Specific areas for further investigation were summarised for inclusion in the first stage of a Delphi consensus study. Conclusions Key stakeholders believe in the value of a clinical guideline that focuses on the different stages of service provision for FES to support walking. A Delphi consensus study is being planned based on the findings.

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.

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