The disease trajectory and healthcare requirements of patients with young-onset dementia (YOD) differ from those of older patients. Accurate data about YOD is crucial to improve diagnosis and optimize care. PRECODE-GP aims to set up a prospective national database of patients with YOD to gain insight into the occurrence and characteristics of patients with YOD in memory clinics in the Netherlands. The national database includes data from dementia patients aged <70 years at diagnosis, collected by local memory clinics (MCs). Data included demographic information, clinical variables, and (etiological) diagnoses. Between July 2019 and December 2022, 781 patients with a mean age of 62±6y at diagnosis (range 37 to 69y) were included from 39 MCs. Most ( = 547,70%) were diagnosed with dementia due to Alzheimer's disease (AD). Patients with Frontotemporal lobe dementia (FTD, = 87, 11%) were youngest (61±6.0y). Over half (55%) of patients were experiencing symptoms for ≥2 years. We initiated a Dutch national YOD database to improve diagnosis and care for this underrepresented and vulnerable patient group. The database provides a basis for future in-depth studies on YOD.
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http://dx.doi.org/10.1002/dad2.12471 | DOI Listing |
Am J Alzheimers Dis Other Demen
December 2024
Department of Anatomy and Medical Imaging, Faculty of Medical and Health Science, University of Auckland, Auckland, New Zealand.
Timely diagnosis of young-onset dementia (YOD) is critical. This study aimed to identify factors that increased time to diagnosis at each stage of the diagnostic pathway. Participants were patients diagnosed with YOD (n = 40) and their care partners (n = 39).
View Article and Find Full Text PDFJ Neurol
December 2024
Neuropsychiatry, Royal Melbourne Hospital, 300 Grattan St, Parkville, VIC, 3052, Australia.
Objective: We investigated diagnostic utility of phosphorylated tau 217 and 181 (ptau217, ptau181), glial fibrillary acidic protein (GFAP), amyloid beta 42 and 40 (Aβ42, Aβ40), and neurofilament light (NfL) to distinguish biomarker-defined Alzheimer disease (AD) from non-AD conditions, in a heterogenous clinical cohort of younger people.
Methods: Plasma biomarkers were analysed using ultrasensitive technology, and compared in patients with CSF Alzheimer disease profiles (A+T+) to other CSF profiles (Other).
Results: Seventy-nine patients were included, median age 60.
Psychogeriatrics
January 2025
Department of Occupational Therapy, School of Health Sciences, Sapporo Medical University, Sapporo, Japan.
Background: The aim of this study was to clarify the engagement status of meaningful activities (MA) and its association with behavioural and psychological symptoms of dementia (BPSD) among people with early-onset dementia (EOD).
Methods: This cross-sectional study included 367 facilities that provide long-term care insurance (LTCI) services in Sapporo, Japan. A questionnaire was sent to these facilities to determine whether they had ever cared for people with EOD who developed dementia before the age of 65 and used LTCI services.
Int J Geriatr Psychiatry
December 2024
Neuropsychiatry Centre, Royal Melbourne Hospital, Parkville, Australia.
PLoS One
December 2024
Medical English Communications Center, Institute of Medicine, University of Tsukuba, Tsukuba, Ibaraki, Japan.
This study identified and analyzed metaphors related to the lived experience of young-onset dementia that were used in nine illness narratives written by people with the condition. A final set of 1111 MEs sorted into 30 source domain categories were grouped according to six target domain categories reflecting the biologic (the person with dementia's body/brain), psychologic (suffering with dementia, coping with dementia, dementia itself, the person with dementia), and social (the social experience of dementia) aspects of having dementia. Notably, many of the metaphors were similar to previously reported metaphors of illness, such as fight and journey, and other metaphors of embodiment, as well as disease as enemy, body as container, and body as machine.
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