Reimagining Postdiagnostic Care and Support in Young-Onset Dementia

Bakker, Christian; Verboom, Marjon; Koopmans, Raymond T.C.M.

doi:10.1016/j.jamda.2021.12.008

Cited by 14 publications

(16 citation statements)

References 18 publications

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“…Similar challenges have been identified internationally, in Ireland recommendations for a young-onset dementia service included named key-workers and clear pathways of communication (Fox et al, 2020), while in Australia a “call to action” included recommendations focusing on service integration and re-conceptualising young-onset dementia within the health-system (Cations et al, 2021). In the Netherlands a successful model of care has been developed involving the establishment of a knowledge centre, working in partnership with the health-service, to provide staff education and increase tailored support (Bakker et al, 2022).…”

Section: Discussionmentioning

confidence: 99%

The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia

Faulkner,

Dickinson,

Limbert

et al. 2024

Dementia

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Background. The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However, evidence looking into staff experiences of supporting someone with young-onset dementia is relatively scarce. The aim of this study was to explore the experiences and reflections of health and social care staff who support people with young-onset dementia within older adult mental health services, and whether their knowledge of the systems they work in could reveal the existence of barriers or facilitators to young-onset dementia care. Methods. Health and social care professionals working with people and carers with young-onset dementia across England were remotely interviewed between September and December 2021. Data were analysed using inductive thematic analysis. Findings. Sixteen staff members were interviewed. Three themes were constructed with six sub-themes. The first theme related to the perception of greater complexity around young-onset dementia support. The second theme describes staff fears around their ability to effectively support people with young-onset dementia, including the perception that young-onset dementia requires specialist input. The final theme describes systemic and structural inefficiencies which provide additional challenges for staff. Conclusions. Providing effective support for people with young-onset dementia and their families requires adjustments both within the clinician role and mental health services. Staff considered young-onset dementia support to be a specialist intervention and felt the services they work for are suited to generic mental health and dementia provision. Findings are discussed with recommendations relating to developing a standardised model of dementia care for young-onset dementia which recognises and responds to the unique experiences of young-onset dementia.

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Section: Discussionmentioning

confidence: 99%

The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia

Faulkner,

Dickinson,

Limbert

et al. 2024

Dementia

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“…Given that younger people with dementia are at a different stage of life compared to older people, age-appropriate services with available postdiagnostic support is essential for their ongoing management. Individuals with YOD and their families have unique needs that are not within the scope of aged care services and prefer a specialist YOD service [28,29]. Specialist YOD services provide a “one-stop-shop” for assessment which include medical (psychiatry, neurology, geriatrics), allied health/multidisciplinary approach (neuropsychology/cognition, occupational therapy/functional, speech therapy), and access to neuroimaging, lumbar punctures and cerebrospinal fluid (CSF) analysis [30] and other investigations [31].…”

Section: Service Provision and Post-diagnostic Supportmentioning

confidence: 99%

Recent research advances in young-onset dementia

Loi

Pijnenburg

Velakoulis

2022

Current Opinion in Psychiatry

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Purpose of reviewYoung-onset dementia (YOD) refers to a dementia for which symptom onset occurs below the age of 65. This review summarizes the recent literature in this area, focusing on updates in epidemiology, diagnosis and service provision. Recent findingsIn the last year, internationally, the prevalence of YOD was reported as 119 per 100 000, but this may vary according to population types. Although the commonest causes of YOD are Alzheimer's disease (AD) and frontotemporal dementia (FTD), there is increasing recognition that YOD is diagnostically and phenotypically broader than AD and FTD. YOD may be due to many other diseases (e.g. Huntington's disease, vascular dementia) whereas accumulation of the same protein (e.g. amyloid protein) may lead to different phenotypes of Alzheimer's disease (such as posterior cortical atrophy and behavioural-variant/ frontal-variant AD). This heterogeneity of phenotypic presentation is also seen in YOD due to known genetic mutations. Biomarkers such as plasma and cerebrospinal fluid proteins, neuroimaging and genetics have shown promise in the early identification of YOD as well as providing further understanding behind the overlap between psychiatric and neurodegenerative conditions occurring in younger people. The management of YOD needs to consider age-specific issues for younger people with dementia and their family networks together with better integration with other health services such as aged, disability and improved access to services and financial assistance.

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“…People living with YOD need to be supported by their local communities to remain living in their own neighbourhoods. [10][11][12] Rabanal et al emphasised the importance of unique services to meet the needs of people living with YOD, compared to those with lateonset dementia. 13 However, a literature review revealed a lack of information on YOD care, highlighting the need to deliver appropriate and timely service.…”

Section: Introductionmentioning

confidence: 99%

“…People living with YOD need to be supported by their local communities to remain living in their own neighbourhoods 10–12 . Rabanal et al .…”

Section: Introductionmentioning

confidence: 99%

An analysis of the contents of the young‐onset dementia helpline: profiles of clients who consulted the helpline themselves

Kogata,

Saito,

Kato

et al. 2024

Psychogeriatrics

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BackgroundYoung‐onset dementia (YOD) community care requires personalised approaches. Yet, the specific details of YOD consultations are unclear. This study explored how initial consultations correlate with client profiles.MethodsData from regional YOD helplines were used to analyze the main characteristics of people living with YOD or who had concerns about the possibility of YOD (n = 132). Among several categorical variables, the following were used for analysis: age group, sex, type of living arrangement, employment status, presence of dementia, and content of the consultation. To identify groups of items that frequently occur together, strongly connected rules were identified using association rule analysis with the a priori algorithm. To focus on the characteristics of clients, rules related to client characteristics were extracted based on the type of consultation.ResultsA total of 51 rules were identified for the consultations. These rules fell into two categories: (1) consultations for medical matters, which mainly involved employed individuals with undiagnosed dementia, and (2) other consultations on daily life or work, which mainly involved individuals diagnosed with dementia and were characterised by the influence of sex. These rules indicate the importance of medical involvement in confirming the diagnosis and specific individualised care following diagnosis for people living with YOD.ConclusionClients with or without a dementia diagnosis were consulted differently in the YOD helplines. Before receiving a diagnosis, medical matters were the main theme of consultations, whereas after receiving a diagnosis, adjustments to daily life or work were the main themes. The results of this study suggest that the needs of people living with YOD and the services they require may vary depending on their backgrounds.

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Reimagining Postdiagnostic Care and Support in Young-Onset Dementia

Cited by 14 publications

References 18 publications

The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia

The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia

Recent research advances in young-onset dementia

An analysis of the contents of the young‐onset dementia helpline: profiles of clients who consulted the helpline themselves

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