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Introduction: Reliable data on the incidence rates for young‐onset dementia (YOD) are lacking, but are necessary for research on disease etiology and to raise awareness among health care professionals. Methods: We performed a systematic review and meta‐analysis on population‐based studies on the incidence of YOD, published between January 1, 1990 and February 1, 2022, according to Meta‐analyses of Observational Studies in Epidemiology (MOOSE) guidelines. Data were analyzed using random‐effects meta‐analyses. Results were age‐standardized, and heterogeneity was assessed by subgroup analyses and meta‐regression. Results: Sixty‐one articles were included. Global age‐standardized incidence rates increased from 0.17/100,000 in age 30 to 34 years, to 5.14/100,000 in age 60 to 64 years, giving a global total age‐standardized incidence rate of 11 per 100,000 in age 30 to 64. This corresponds to 370,000 new YOD cases annually worldwide. Heterogeneity was high and meta‐regression showed geographic location significantly influenced this heterogeneity. Discussion: This meta‐analysis shows the current best estimate of YOD incidence. New prospective cohort studies are needed. [ABSTRACT FROM AUTHOR]

Background: Although dementia is often associated with old age, it also occurs below the age of 65. People with so called young‐onset dementia (YOD) have different needs compared to people with late‐onset dementia (LOD), however, most health care facilities are primarily directed at older patients. Accurate numbers of the prevalence of YOD are necessary to determine the required budget, set priorities by policy makers and ensure sufficient and appropriate health care. Method: In this study we investigated the 1 year prevalence of YOD in two predefined catchment areas in the Netherlands: an urban and a rural area, together representative for the Dutch population. We recruited health care professionals working with individuals with YOD (case managers, neurologists, psychologists, psychiatrists and nursing home staff) and asked them to register each YOD patient they encountered. Cases were included if persons had a diagnosis of YOD before the age of 70 or displayed symptoms before the age of 65, and lived within the catchment area. The collection of minimal personal identifiers per patient resulted in a unique personal code, which was used to prevent double counting. Result: Health care professionals registered 409 individuals with YOD within the urban area and 209 individuals within the rural area, which translates to respectively 41.5 and 36.6 per 100.000 population in the group aged 30 to 65 years. Alzheimer disease was the most common diagnosis (52,3% and 53,8%), followed by vascular dementia (26,3% and 11,2%) and frontotemporal dementia (7,3% and 8.6%). Other characteristics such as living situation, as well as cultural background will be analyzed. Conclusion: Preliminary data point out that the prevalence of people with YOD in the Netherlands is between 36.6 and 41.5 per 100.000 population. This prospective case finding study also shed light on methodological issues in prevalence research. Advantages are a more accurate case finding. Disadvantages are higher costs and a great dependency on other health care professionals. [ABSTRACT FROM AUTHOR]

Objective: The effect of an intervention on neuropsychiatric symptoms (NPS), particularly agitation and aggression, and psychotropic drug use (PDU) in institutionalized people with young-onset dementia (YOD) was evaluated.Methods: A randomized controlled trial was conducted using a stepped wedge design. Thirteen YOD special care units were randomly assigned to three groups, which received the intervention at different time points. Four assessments took place every 6 months during a period of 18 months. Two hundred seventy-four people with YOD who resided in YOD special care units participated, of whom 131 took part in all assessments. The intervention consisted of an educational program combined with a care program, which structured the multidisciplinary process of managing NPS. The care program included the following five steps: evaluation of psychotropic drug prescription, detection, analysis, treatment, and evaluation of treatment of NPS. The Cohen-Mansfield Agitation Inventory and the Neuropsychiatric Inventory-Nursing Home version were used to assess NPS. Data on PDU were retrieved from residents' medical files. Multilevel models were used to evaluate the effect of the intervention, which accounted for clustering of measurements in clients within units.Results: No significant differences were found in agitation, aggression, other NPS, or PDU after crossing over to the intervention condition.Conclusion: We found no evidence that the intervention for management of NPS in nursing home residents with YOD was more effective in reducing agitation, aggression, other NPS, or PDU compared with care as usual. [ABSTRACT FROM AUTHOR]

Objectives: The impact of the dementia might be more severe for caregivers of people with young onset dementia (YOD) compared with those who care for someone with late onset dementia (LOD), as a young age among caregivers has been identified as a predictor of increased burden. The present study compares well-being between LOD and YOD caregivers longitudinally because this knowledge is essential in order to develop adequate support programs.Design, Setting, and Participants: 220 YOD and 108 LOD patient-caregiver dyads were included from two prospective cohorts with a 2-year follow up. To assess well-being we used the Short Sense of Competence Questionnaire, the RAND-36, the Symptom Checklist 90, and the Montgomery Asberg Depression Rating Scale. The severity and the course of the different measures used to describe caregiver burden were analyzed with linear mixed models.Results: Caregivers in both groups experienced high levels of physical and psychological complaints, mild depressive symptoms, lower health-related quality of life (HRQoL), and decreased feelings of competence. The severity and the course of most measures were similar in both groups, although HRQoL on both the physical and the mental domain was lower for the YOD caregivers.Conclusions: The number of actual psychological and physical complaints does not differ between YOD and LOD caregivers. YOD caregivers have greater perceived difficulties in daily life because of these complaints, however. [ABSTRACT FROM AUTHOR]

The article presents a study aimed at proving that the number of unmet needs in young-onset dementia (YOD) is related to both patient and caregiver health-related quality of life (HRQOL). Topics discussed include HRQOL in YOD patients and likely differences with caregiver views on patient HRQOL, HRQOL in YOD caregivers compared with the general population, and the link between unmet needs and both patient and caregiver HRQOL in YOD.

Background: It is unknown whether there are differences between young-onset dementia and late-onset dementia in awareness levels and whether awareness is differentially associated with affective symptoms in both groups. The present study assesses possible differences between young-onset (YO-AD) and late-onset Alzheimer disease (LO-AD) in awareness levels and the association between awareness and affective symptoms. Methods: This study included 142 YO-AD and 126 LO-AD patients and their caregivers from 2 prospective studies. The participants were assessed 3 times during 1 year. Awareness was assessed using the Guidelines for the Rating of Awareness Deficits, and affective symptoms were assessed using the anxiety and depression items of the Neuropsychiatric Inventory. Population-averaged logistic regressions were used to analyze awareness and its association with affective symptoms. Results: The odds for impaired awareness in LO-AD were more than double the odds in YO-AD. Intact awareness was associated with depressive symptoms but not with anxiety. This effect was more pronounced in YO-AD compared with LO-AD at baseline. High awareness at baseline did not predict incident affective symptoms. Conclusions: Caregivers and clinicians should be prepared for affective symptoms in YO-AD patients with high awareness. The higher awareness in the YO-AD group also has potential positive implications for this group. [ABSTRACT FROM AUTHOR]

Objective: Early onset dementia (EOD) poses specific challenges and issues for both the patient and (in)formal care. This study explores the use of (in)formal care prior to institutionalization, and its association with patient and caregiver characteristics. Design/Setting: Participants were part of a community-based prospective longitudinal study of 215 patients and their informal caregivers. Participants: Baseline data of a subsample of 215 patient--caregiver dyads were analyzed. Measurements: Analyses of covariance were performed to determine correlates of(in)formal care use assessed with the Resource Utilization in Dementia (RUD)-Lite questionnaire. Results: Informal care had a 3:1 ratio with formal care. Supervision/surveillance constituted the largest part of informal care. In more than half of cases, patients had only one informal caregiver. The amount of informal care was associated with disease severity, showing more informal care hours in advanced disease stages. Fewer informal care hours were related to more caregiver working hours, especially in younger patients. The amount of formal care was related to disease severity, behavioral problems, and initiative for activities of daily living. Conclusion: In EOD, it appears that family members provide most of the care. However, other social roles still have to be fulfilled. Especially in spousal caregivers of younger patients in advanced disease stages, there is a double burden of work and care responsibilities. This finding also indicates that even within the EOD group there might be important age-related differences. The relatively higher amount of formal care use during advanced disease stages suggests a postponement in the use of formal care. [ABSTRACT FROM AUTHOR]

Background: Young‐onset dementia (YOD) denotes persons who have an onset of the disease before the age of 65. Information on the epidemiology of YOD, especially the incidence, is scarce. Insight into the incidence can contribute to further research on the etiology, mechanism and risk factors of YOD. Therefore, we aimed to conduct a systematic review and meta‐analysis collecting all published data on the incidence of YOD worldwide. Method: This systematic review and meta‐analysis was conducted using the PRSIMA guidelines. A thorough literature search was performed in PubMed, Embase, CINAHL and PsychINFO. Eligible studies were prospective or retrospective population‐based studies reporting on the incidence of dementia under the age of 65. No restrictions on language were applied, and studies published between 1990 and March 2020 were screened. Random‐effect meta‐analyses were used to pool 5‐year incidence rates together. Incidence rates were age‐standardized for the World Standard Population whenever possible. Subgroup analyses and meta‐regression were used to identify factors influencing heterogeneity between studies. The study is registered with PROSPERO, number CRD42019119288. Result: 50 articles were included in the systematic review, of which 42 were included in the meta‐analysis. Studies were mostly conducted in Europe, with few studies from North America, Asia and Oceania. Age‐standardized incidence rates of YOD increased from 0.15/100,000 in the age group 30‐34 years, to 4.83/100,000 in the age group 60‐64 years, resulting in an overall incidence rate of 11/100,000 in the total age group 30‐64. This corresponds to 360,000 new cases globally per year. Heterogeneity between studies was high. Subgroup analyses showed incidence rates between males and females were similar. Meta‐analyses of different dementia subtypes showed incidence was highest for Alzheimer's disease, followed by vascular dementia and frontotemporal dementia. Meta‐regression showed geographic location of the studies significantly influenced heterogeneity. Conclusion: This review showed current age‐standardized incidence rates of YOD are estimated to be 11/100,000 person‐years. However, there are still knowledge gaps to address in future research, such as differences in incidence by ethnicity and subtypes of dementia. [ABSTRACT FROM AUTHOR]

Background: The disease trajectory of patients with young onset dementia differs from older patients, as do healthcare requirements. To improve specialized care, more insight in young onset dementia is crucial. The aim of PRECODE‐GP is therefore 1) to conduct an (annual) inventory of the diagnostic workup in all memory clinics in the Netherlands, and 2) to set up a prospective nationwide database including newly diagnosed younger patients with dementia. Methods: PRECODE‐GP is part of the PRECODE project, a collaboration between four Dutch Alzheimer centers, Knowledgecenter Dementia at Young Age, Nivel and Alzheimer Nederland. Governance is embedded in the Dutch Memory Clinic Network. Memory clinics are asked annually to fill out a survey on their current diagnostic workup. Eligible patients (<70 years; any type of dementia) are identified by local specialists and recruited via an informed consent procedure providing consent for future linkage to other datasets. Demographics, test results and (etiological) diagnosis are collected in an online database. Results: PRECODE‐GP was initiated in July 2019 and has been approved in 36 memory clinics, approval procedure is ongoing in additional 10 clinics. Based on the annual survey (filled out by 21 clinics), standard imaging of the brain occurs in almost half of memory clinics and neuropsychological examination in one third. CSF is performed when deemed necessary by the clinician. A median 250(141‐396) new patients visited the memory clinics yearly, of whom 111(74‐180)(48%) were diagnosed with dementia and 12(4‐36)(6%) were <70 years. To date, 201 young onset dementia patients (age 62±8, 51% female, MMSE 22±5) are included in our prospective database, diagnosed with 140(69%) Alzheimer's dementia (AD), 29(14%) frontotemporal dementia (FTD), 14(7%) dementia with Lewy Bodies (DLB) and 18(9%) other dementia types. Patients with FTD were youngest (61±6 years), subjects with DLB were most often male (79%), in AD MMSE was lowest (21±5). Conclusion: We took the first step to include patients with young onset dementia via all Dutch memory clinics. As a next step, we plan to link data to existing registries, to gain valuable knowledge on disease trajectories. All needed to improve quality of life for patients with young onset dementia. [ABSTRACT FROM AUTHOR]