2022
DOI: 10.1002/gps.5859
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System and policy‐level barriers and facilitators for timely and accurate diagnosis of young onset dementia

Abstract: Objective The multiyear diagnostic journey for young onset dementia (YOD) is fraught with clinical and personal difficulties and poses significant uncertainty for people living with YOD and their families. Most existing research has examined the personal and/or clinical barriers to a timely diagnosis of YOD, but less evidence exists regarding system level factors. The aim of this study is to investigate health professionals' insights for a timely and accurate YOD diagnosis at the system level. Design Grounded … Show more

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Cited by 6 publications
(7 citation statements)
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“…The study highlights some of the challenges for the UK health-system on meeting the needs of the young-onset dementia population, supporting previous research (Burkinshaw et al, 2023). Lack of recognition of its unique complexity may prevent organisations from offering tailored support, and this may lead to teams being expected to provide support not feeling prepared to do so effectively.…”
Section: Discussionsupporting
confidence: 85%
“…The study highlights some of the challenges for the UK health-system on meeting the needs of the young-onset dementia population, supporting previous research (Burkinshaw et al, 2023). Lack of recognition of its unique complexity may prevent organisations from offering tailored support, and this may lead to teams being expected to provide support not feeling prepared to do so effectively.…”
Section: Discussionsupporting
confidence: 85%
“…On the other hand, several factors decreased the probability of future favorable HUTs. In the 65–74 years group, the youngest subjects had a decreased probability of future favorable HUTs, which could be explained by a late diagnosis related to a medical nomadism and difficulties in identifying ADRD in young people [ 35 ]. Among subjects aged 75 and older, increasing age may be associated with later suboptimal ADRD management due to health professionals fatalism (alongside family caregivers and subjects themselves) [ 36 ], leading to a disengagement towards medical follow-up.…”
Section: Discussionmentioning
confidence: 99%
“…Regardless of where people live, being aged below 65 and/or experiencing symptoms that are part of a rarer subtype of dementia, such as behavioural‐variant frontotemporal dementia, Lewy body dementia, semantic dementia or posterior cortical atrophy, makes an individual less likely to receive a diagnosis or receive the diagnosis belatedly compared to those aged above 65 and experiencing symptoms of the most common form of dementia—Alzheimer's disease 9 . This is linked to a lack of GP awareness of the symptoms, with GPs often failing recognising that someone in their 30s may experience symptoms of dementia 4 …”
Section: Introductionmentioning
confidence: 99%
“…Receiving a diagnosis of dementia can be challenging, and is affected by many factors, including education, culture, stigma, general practitioner (GP) knowledge, age and dementia subtype 4–6 . Culture and understanding of dementia can be significant barriers, especially among people from minority ethnic backgrounds in high‐income countries and people residing in low‐ and middle‐income countries (LMICs) 2,7 .…”
Section: Introductionmentioning
confidence: 99%
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