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Introduction: People living with young-onset dementia and their care-partners are at risk of a range of adverse mental health outcomes and social isolation. There are few interventions aimed at supporting couples affected by young-onset dementia, which poses unique psychosocial challenges for younger people. Methodology: This pre-post interventional mixed methods pilot study aimed to assess the feasibility and acceptability of an online group program for people with young-onset dementia and their care-partners living at home in Australia. The Music And Psychology and Social connections (MAPS) program aimed to address: (1) the challenges and changes associated with young-onset dementia; and (2) coping and wellbeing. The program involved six weekly two-hour sessions co-facilitated by a psychologist and music therapist, and a private Facebook group. The primary outcomes of feasibility and acceptability were assessed through a post-program focus group, separate individual feedback sessions with each couple, and a program evaluation questionnaire. Thematic analysis was conducted on the focus group transcripts and field notes from couple feedback sessions. We also examined the preliminary utility of MAPS in improving mental health and social connectedness, using quantitative pre-post-measures. Results: Five couples completed the MAPS program. The most common dementia type was Alzheimer's Disease. Participant attendance was 87% across all sessions. Qualitative findings supported acceptability of the program with four emergent themes: being connected to others with shared experiences; reframing thoughts and feelings about dementia; music as a therapeutic tool; and benefits of MAPS. Conclusion: The high retention rate, qualitative findings and positive program evaluation suggest MAPS may be a promising, feasible and acceptable program for couples affected by young-onset dementia. [ABSTRACT FROM AUTHOR]

Background: The relationship between young-onset dementia and peripheral vestibular disorders remained largely unknown although this association was observed in the older population. Objective: This case-control study aims to investigate the association of young-onset dementia with a pre-existing diagnosis of peripheral vestibular disorders using a population-based data from Taiwan's Longitudinal Health Insurance Database 2010. Methods: This study included 989 patients with young-onset dementia and 2967 propensity-score-matching controls. Differences in baseline characteristic between patients with young-onset dementia and controls were investigated using chi-square tests or t-tests. Multiple logistic regression models were employed to assess the association of young-onset dementia (outcome) with pre-existing peripheral vestibular disorders (predictor). Results: Compared to patients without young-onset dementia, those affected by this condition exhibited a statistically significantly higher rate of peripheral vestibular disorders (18.3% versus 8.2%, p < 0.001). Furthermore, our analysis found notable between-group disparities in the rates of Meniere's Disease (3.5% versus 2.0%, p= 0.015), benign paroxysmal positional vertigo (2.4% versus 1.1%, p= 0.006), and vestibular neuritis (2.4% versus 1.1%, p= 0.003). Multiple logistic regression analysis showed that the presence of prior peripheral vestibular disorders increased the odds of young-onset dementia [2.603 (95% CI = 2.105∼3.220)] after adjusting for age, sex, monthly income, geographic location, urbanization level, hyperlipidemia, diabetes, coronary heart disease, hearing loss, and hypertension. Conclusions: The study findings demonstrate a notable association between young-onset dementia and pre-existing peripheral vestibular disorders, suggesting that vestibular malfunction could play a role in the development of young-onset dementia. [ABSTRACT FROM AUTHOR]

This work aimed to develop a Best Practice Guidance on online peer support for people with young-onset dementia (YOD). The Best Practice Guidance was developed through a systematic literature review, focus groups, an online survey, and interviews and consultations with people with YOD and professionals. The Best Practice Guidance consists of two parts. Part 1 contains information for people with YOD about what online peer support entails, what to expect from it, and how to get involved. Part 2 is aimed at those who facilitate or moderate online peer support (professionals or people with lived experience) and includes guidelines on how to optimize online peer support for people with YOD. The Best Practice Guidance on online peer support provides (1) people with YOD with evidence-based, relevant, and accessible information about what online peer support entails and how it could help them, (2) providers and facilitators with guidelines on how to optimize online peer support for people with YOD, and (3) healthcare professionals with a concise and accessible tool for signposting. Future research is needed to implement and disseminate the Best Practice Guidance among dementia organizations and healthcare practices and should include rigorous studies on the implementation and sustainability of online peer support for people with YOD. [ABSTRACT FROM AUTHOR]

Background: Young-onset dementia (YOD) refers to dementia occurring before the age of 65, with Alzheimer's disease being the most common form, posing distinct challenges for spousal caregivers. Objective: This study aims to investigate the unique experiences of spousal caregivers of persons with YOD in China, where dementia-specific community care services and primary healthcare professionals are relatively lacking, in order to inform the tailored support services development. Methods: This qualitative-design study utilized semi-structured interviews with 11 spousal caregivers of persons with YOD dwelling in the community. Traditional content analysis was employed to analyze the interview data. Results: Limited dementia-specific healthcare professionals and low public awareness made diagnosing and accepting YOD a prolonged and challenging journey. Spousal caregivers faced skepticism when seeking diagnosis, exacerbating their burden and emotional stress. Disparities in healthcare professionals and insufficient collaboration between institutions worsened the situation. YOD significantly impacted family dynamics and led to changes in emotional communication within the family. The stigma surrounding YOD raised concerns among spousal caregivers about their children's future in marriage and career, emphasizing genetic risks. Conclusions: In settings where dementia-specific community care services and primary healthcare professionals are limited and unevenly distributed, integrating support services at both the primary and community levels is crucial for families dealing with YOD in the community. Additionally, raising public awareness about YOD can foster a more understanding and supportive environment, addressing challenges related to stigma faced by affected families, contributing to increased investment in supporting resources, and encouraging individuals to seek help early on. [ABSTRACT FROM AUTHOR]

Objectives: Mental health triage services are the first contact for people wanting support for their mental health and provide access to public mental health services in Victoria, Australia. People living with young-onset dementia and their families may contact triage services seeking assistance for behaviour changes and pathways to care as there are few alternative services available. Methods: The authors reviewed the minimum triage dataset from one of the largest mental health services in Victoria, Australia from 2018 to 2021 investigating reasons for referral for people with young-onset dementia. Results: Of the 1766 referrals for 'dementia', 145 were for young-onset dementia. Of these, 69% were referred for behaviour changes. About half of the referrals for behaviour changes were triaged as 'advice only'. One-third of referrals were from general practitioners. Conclusions: The availability of dementia-specific support services that could provide advice on dementia as well as advice for behaviour changes related to the disease could potentially ease the burden of phone calls received by mental health triage services. What is known about the topic? Young-onset dementia refers to a dementia with onset at less than 65 years of age. People with young-onset dementia may contact mental health services for support but the reasons for contact are unknown. What does this paper add? The reasons for contacting one Victorian mental health service included behaviour changes such as agitation or aggression and psychotic symptoms (74%) and general advice, including about dementia pathways (14%). General practitioners made up one-third of referral sources. What are the implications for practitioners? Victorian mental health services are generally overloaded and complex. There is a need to promote alternative dementia support organisations in order to provide an alternative contact for people affected by young-onset dementia. [ABSTRACT FROM AUTHOR]

Objectives: Individuals living with young-onset dementia fall through the gaps of adult and geriatric services. Given that non-cognitive symptoms of dementia in younger people are often psychiatric and behavioural in nature, these people may contact mental health services. There is sparse information investigating the frequency of people with young-onset dementia who contact mental health triage in Victoria. Methods: Triage data were obtained from the Victorian Agency for Health Information. The data contained demographics for people registered with Victorian mental health services. Consumers who had an International Classification for Diseases code for dementia and were aged less than 65 years were identified as people with young-onset dementia. Using information of the frequency of people with young-onset dementia who were registered with each area-based mental health service, population census statistics were used to make estimates of the frequency of young-onset dementia. Results: Of the 6172 people who had a dementia diagnosis, 1020 of them were aged less than 65 years and had young-onset dementia. There were proportionally more men who had young-onset dementia compared to women. There were more people with young-onset dementia registered to rural mental health services compared to metropolitan services. Conclusion: Findings provide important information for service planning in Victoria. Recommendations include upskilling and education for the assessment of dementia for those clinicians who work in mental health services, particularly in rural regions. What is known about the topic? Young-onset dementia refers to a dementia with onset at an age less than 65 years. Accessing age-appropriate services for these people is difficult as they fall through the gaps of adult and aged services due to their age. What does this paper add? Due to the behavioural and psychiatric manifestations related to young-onset dementia, data is provided about mental health service involvement for these people. What are the implications for practitioners? There is a need to upskill mental health clinicians, especially in rural areas, as younger people with dementia are accessing these services. [ABSTRACT FROM AUTHOR]

Young-onset dementia (YOD) symptoms often first present in the workplace, resulting in work performance challenges and eventually loss of employment. This study aims to investigate the experiences, work values, and support needs of employees with YOD and their relatives. Semi-structured interviews were conducted to explore the experiences, work values, and support needs of (former) employees with YOD and their relatives. Subsequently, separate focus group discussions were conducted for employees and relatives to review and prioritize interview findings. Inductive thematic analysis was applied to both datasets. A total of 15 interviews (six employees; nine relatives) and four focus group discussions (ten employees; six relatives) were conducted. Six themes emerged, with five revolving around the central theme: desire to work. The other themes represent essential contributing factors, including importance of receiving a YOD diagnosis; knowledge, awareness, and understanding regarding YOD; open communication, joint decision making, and collaboration; work adjustments, involvement, and support; phasing out work and future perspectives. The findings highlight a strong desire to work post-YOD diagnosis, serving as a foundation for developing workplace support tools and guidance. This has the potential to help individuals with YOD preserve their self-confidence and identity while working within their capabilities. [ABSTRACT FROM AUTHOR]

Abstract Background Dementia is associated with older adults; however, it can also affect younger individuals, known as young-onset dementia (YOD), when diagnosed before the age of 65 years. We aimed to conduct a retrospective cohort study involving middle-aged women to investigate the association between premorbid depression and YOD development. Methods We included 1.6 million women aged 40–60 years who underwent health checkups under the Korean National Health Insurance Service and investigated the association between depression and YOD. Results Women with depression had a significantly higher risk of developing YOD than women without depression. Among premenopausal women, those with depression had a 2.67-fold increased risk, whereas postmenopausal women with depression had a 2.50-fold increased risk. Late age at menarche (> 16 years) and young age at menopause (

Abstract Background Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support. Methods This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support. Results Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p

Background: Studies have shown that the prevalence of all-variants Alzheimer's disease (AD) and frontotemporal dementia (FTD) both increase with age, even before the age of 65. However, it is not known whether their different clinical presentations all increase in prevalence with age in the same way. Methods: We studied the prevalence of the different clinical presentations of young-onset AD and FTD by 5-year age groups in a population-based study identifying all dementia patients with a diagnosis of AD and FTD and symptoms onset before age 65 in the Modena province, Italy. By using regression models of cumulative occurrences, we also estimated age-specific prevalence and compared the growth curves of the clinical presentations. Results: The prevalence of all-variants AD increased with age, from 18/1,000,000 in the 40–44 age group to 1411/1,000,000 in the 60–64 age group. The prevalence of all-variants FTD also increased with age, from 18/1,000,000 to 866/1,000,000. An estimation of age-specific prevalence functions of each clinical presentation showed that atypical non-amnestic AD and aphasic FTD grew the most in early ages, followed by the behavioural variant of FTD (bvFTD). Then, around the age of 60, amnestic AD took over and its age-specific prevalence continued to increase disproportionally compared to all the other clinical variants of AD and FTD, which, instead, started to decrease in prevalence. Conclusions: Amnestic AD is the clinical presentation that increases the most with advancing age, followed by bvFTD, suggesting that there is a differential vulnerability to the effect of ageing within the same neurodegenerative disease. [ABSTRACT FROM AUTHOR]

Background: Dementia is associated with older adults; however, it can also affect younger individuals, known as young-onset dementia (YOD), when diagnosed before the age of 65 years. We aimed to conduct a retrospective cohort study involving middle-aged women to investigate the association between premorbid depression and YOD development. Methods: We included 1.6 million women aged 40–60 years who underwent health checkups under the Korean National Health Insurance Service and investigated the association between depression and YOD. Results: Women with depression had a significantly higher risk of developing YOD than women without depression. Among premenopausal women, those with depression had a 2.67-fold increased risk, whereas postmenopausal women with depression had a 2.50-fold increased risk. Late age at menarche (> 16 years) and young age at menopause (< 40 years) was associated with an increased risk of YOD. Conclusions: Depression in middle-aged women is a significant risk factor for the development of YOD. Understanding the role of reproductive factors can aid in the development of targeted therapeutic interventions to prevent or delay YOD. [ABSTRACT FROM AUTHOR]

Background Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support. Methods This retrospective study used data on persons under 65 years of age (n=284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support. Results Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p<.05) and home help (p<.05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p<.01) for information and educational support offered to the family. Care setting significantly predicted (p<.01) an offer of information and educational support for the person and family members, as well as contact with a counsellor. Conclusion This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with youngonset dementia. [ABSTRACT FROM AUTHOR]

Aim: Few studies have examined the characteristics of domestic violence (DV) committed by people with dementia. We provide an overview of DV perpetrated by people with dementia in the community based on police reports of attendances at DV events. Method: A text mining method was used on 416,441 New South Wales (NSW) police narratives of DV events from January 2005 to December 2016 to extract information for Persons of Interest (POIs) with mentions of dementia. Results: Events involving those with dementia accounted for a relatively low proportion of total DV events (<1%). Of the 260 DV events with a dementia mention for the POI, the most common abuse types were assault (49.7%) and verbal abuse (31.6%). Spouses were the largest group of victims (50.8%) followed by children (8.8%). Physical abuse was common, occurring in 82.4% of events, but injuries were relatively mild. Although weapons were infrequently used, they were involved in 5% of events, mostly by POIs aged 75 years and older. Similarly, the POIs were mainly aged 75+ years (60%), however the proportion of those aged <65 was relatively high (20.8%) compared to the reported prevalence of dementia in that age group. Conclusions: This study demonstrates that some cases of DV perpetrated by people with reported dementia are significant enough to warrant police involvement. This highlights the need to proactively discuss the potential for violence as part of the holistic management and support family members, particularly those caring for people with young-onset dementias. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Summary: Background: Dementia among younger people is rapidly emerging as a global health concern; however, comprehensive research on its shifting burden trends remains insufficient. Methods: Data on the prevalence, incidence, mortality, and disability-adjusted life years (DALYs) associated with dementia occurring in individuals

This review examines factors associated with quality of life (QoL) in persons with young‐onset dementia (YOD). Studies investigating and analysing factors related to QoL in persons with YOD were included. Databases searched included PubMed, CINAHL, Web of Science, EMBASE, and SCOPUS. Due to inconsistent outcome variables across studies, synthesis without meta‐analysis was used for data integration. Methodological quality was assessed, and results were synthesised. Eleven studies were included in this review, identifying different factors influencing QoL in persons with YOD, which could be categorised into six groups. Behavioural and psychiatric factors showed the highest significant findings ratio (SFR), as determined by the ratio of ‘studies finding significance’ to the ‘total number of studies addressing the factor’. Following in terms of SFR were care‐related and physical factors. Demographic and dementia‐characteristic factors had the lowest SFR. Among single factors, depressive symptoms, and neuropsychiatric symptoms, both included in behavioural and psychiatric factors, had the highest SFR. This systematic review highlights the importance of behavioural and psychiatric elements in QoL in persons with young onset and points to depressive symptoms and neuropsychiatric symptoms as potential therapeutic targets. However, as research on QoL in persons with YOD continues to expand, the inclusion of methods such as meta‐analysis may be beneficial. [ABSTRACT FROM AUTHOR]

Background: Dementia occurring before age 65 is known as young-onset dementia (YOD), with Alzheimer's disease being the most common type. YOD poses unique challenges for persons and families, impacting their working-age years and family responsibilities. Person-centered interventions and services are essential to improve their quality of life and social engagement. Objective: This study aims to synthesize non-pharmacological interventions for persons with YOD and their families to inform future targeted interventions. Methods: We conducted a systematic literature search across four databases: PubMed, PsycINFO, Scopus, and CINAHL. The included articles were carefully screened, categorized, and synthesized by following Arksey and O'Malley's five stages framework. Results: We included 20 studies reported in 24 papers, with 11 studies (14 papers) on persons with YOD and nine studies (10 papers) on families. Quantitative intervention results vary, but qualitative interviews show positive feedback. Stakeholders provided positive evaluations, stating these interventions provided a sense of normalcy, facilitated communication among families, enhanced the independence of persons with YOD, and improved the families' caregiving self-efficacy, thereby reducing care burden and psychological distress. The heterogeneity among the studies posed integration challenges. Conclusions: Interventions for YOD can improve the quality of life for both persons with YOD and their families. More extensive intervention studies are urgently needed, especially in developing countries, with a focus on family-centered and life course perspectives. In future intervention research design, a more extensive incorporation of stakeholder involvement is essential for successful implementation. Moreover, the integration of new technologies shows promise as a potential avenue for intervention advancement. [ABSTRACT FROM AUTHOR]

Accessible Summary: What is known on the subject?: Young‐onset dementia (YOD) refers to a phenomenon in which dementia symptoms appear under age 65. Diagnosing YOD is difficult and its progression is fast. Furthermore, it limits the socio‐economic careers of people living with YOD, regardless of their needs.People living with YOD and their carers have unstable occupational status and their dependents also have to face a high burden of care. They claim that existing social support for dementia is limited to the elderly and is not suitable for them. What the paper adds to existing knowledge?: The characteristics of non‐pharmacological intervention studies for people living with YOD and/or their carers so far, and an analysis of the needs supported via the applied interventions.A theoretical basis and direction for the interventions to be studied in the future. What are the implications for practice?: Research and intervention development should focus more on the needs of people living with YOD. In addition, it is necessary to understand and reflect on carers who directly care for people living with YOD.A multidisciplinary programme that supports wide area of the needs should be developed. Introduction: Young‐onset dementia (YOD) is a highly influential disease that exerts force on the normal life of those who still have to continue social life. Research has been lacking in spite of its seriousness, which accounts for about 9% of all dementia cases. Aim: This study aimed to examine non‐pharmacological interventions for people living with YOD and/or their carers, and to analyse how those interventions support their needs. Method: A scoping review methodology was utilized to search the studies examining interventions for people living with YOD and/or their carers, and in English or Korean. The information was extracted, summarized and analysed in CANE categories. Results: Sixteen studies were included in the review. Five types of interventions were drawn. 'Memory' was the most covered part of the needs by the interventions. Discussion: This study found that interventions currently do not match the needs of people living with YOD and their carers. Multidisciplinary research would be eligible to cover the subjects' wide range of the needs as much as possible. Implications for Practice: We suggest the development of a specialized needs assessment tool and specialized interventions for people living with young‐onset dementia and their carers. [ABSTRACT FROM AUTHOR]

To evaluate the effectiveness of the SPAN-intervention, a psychosocial intervention aiming at improving a sense of usefulness and engaging in meaningful activities, for community-dwelling people living with young-onset dementia (YOD) and their family caregivers. A cluster-randomized controlled trial with two parallel groups (SPAN-intervention vs. care as usual) with assessments at baseline and five-month follow-up was performed. Sixty-one persons living with YOD and their family caregivers were included (SPAN-intervention group: n = 35; care as usual group: n = 26). Outcomes included, for the person living with YOD, empowerment (operationalized by self-management abilities using the SMAS-30; primary outcome), quality of life, neuropsychiatric symptoms, disability, apathy; and, for the family caregiver, quality of life, emotional distress, sense of competence. Data were analyzed using linear mixed models. We found no statistically significant effects of the SPAN-intervention on empowerment, nor on the secondary outcome measures for persons living with YOD or their family caregivers. Although the SPAN-intervention may provide concrete opportunities to engage in activities and stimulate reciprocity, such as meaningful social activities, this study did not demonstrate intervention effects. Additional qualitative evaluations may provide more insight into the implementation process and experiences of people living with YOD and their family caregivers. This trial was registered at ClinicalTrials.gov (NCT02937883). [ABSTRACT FROM AUTHOR]

Objectives: Timely diagnosis of young-onset dementia (YOD) is an important prerequisite to initiate appropriate support. However, YOD diagnosis is often late. We aimed to explore the perspectives of referring general practitioners and occupational physicians, to better understand their barriers to YOD diagnosis and reveal potential solutions to facilitate timely diagnosis. Methods: We conducted 16 semi-structured qualitative interviews with general practitioners and occupational physicians in the Netherlands. Inductive thematic analysis was applied to the transcripts with a team including researchers from various (clinical) backgrounds. Results: Thematic analysis revealed three themes related to: (1) disease characteristics that hinder YOD recognition, being the low incidence and the fact that they mimic other prevalent conditions like burn-out and depression; (2) physicians' attitudes that delay YOD diagnosis, as fear of mis-diagnosis and therapeutic nihilism; and (3) proposed solutions to navigate the challenging YOD diagnostic trajectory including monitoring people with depression and burn-out to consider YOD when recovery stagnates, and more effective interprofessional collaboration. Conclusion: In this study, referring physicians confirmed barriers known to YOD diagnosis and suggested potential solutions to improve YOD diagnosis. Future prospective studies in people with a primary diagnosis of depression or burn-out may show whether these interventions are potentially effective. [ABSTRACT FROM AUTHOR]

This work aimed to develop a Best Practice Guidance on online peer support for people with young-onset dementia (YOD). The Best Practice Guidance was developed through a systematic literature review, focus groups, an online survey, and interviews and consultations with people with YOD and professionals. The Best Practice Guidance consists of two parts. Part 1 contains information for people with YOD about what online peer support entails, what to expect from it, and how to get involved. Part 2 is aimed at those who facilitate or moderate online peer support (professionals or people with lived experience) and includes guidelines on how to optimize online peer support for people with YOD. The Best Practice Guidance on online peer support provides (1) people with YOD with evidence-based, relevant, and accessible information about what online peer support entails and how it could help them, (2) providers and facilitators with guidelines on how to optimize online peer support for people with YOD, and (3) healthcare professionals with a concise and accessible tool for signposting. Future research is needed to implement and disseminate the Best Practice Guidance among dementia organizations and healthcare practices and should include rigorous studies on the implementation and sustainability of online peer support for people with YOD.

Background: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD). Objective: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes. Methods: The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP. Results: The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics. Conclusions: ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems. [ABSTRACT FROM AUTHOR]

INTRODUCTION: The goal of the present work was to assess the incidence of dementia with onset before the age of 65 years (i.e., young‐onset dementia [YOD]) and define the frequencies of young‐onset Alzheimer's disease (AD), frontotemporal lobar degeneration (FTLD), and dementia with Lewy bodies (DLB) in the general population. METHODS: The study was conducted from January 1, 2019 to December 31, 2019 in Brescia province (population: 1,268,455). During the study period, all new YOD cases (incident YOD) were counted, and all patients' records reviewed. The incidence was standardized to the Italian general population in 2019. RESULTS: A total of 29 YOD patients were diagnosed. The age‐sex standardized incidence rate was 4.58 (95% confidence interval, 3.07–6.58) per 100,000 person‐years. No difference in incidence rate between YOD due to AD or FTLD (P = 0.83) and between sexes (P = 0.81) was observed. YOD incidence increased with age, reaching its peak after 60 years. DISCUSSION: Presenting neurodegenerative YOD phenotypes encompasses both AD and FTLD. Improved knowledge on YOD epidemiology is essential to adequately plan and organize health services. [ABSTRACT FROM AUTHOR]

Background: Family caregivers are fundamental in supporting people living with dementia to remain at home, however, psychological distress can occur as a result of their caring role. Research into interventions for caregivers of people living with young-onset dementia, including their experience of and the mediating processes of such interventions, remains limited. Methods: An Interpretative Phenomenological Analysis explored caregiver experiences and influence on caregiving of participating in a "Responding to Distress in Dementia" group. Five family caregivers were interviewed with discussions covering the period from first noticing symptoms to the interview session. Results: Within the group experience, four superordinate themes were identified: 'connecting to other caregivers', 'l earning about caregiving', ' group factors' and ' reduced caregiver distress'. During the post-group period, three superordinate themes were recognised: 'maintaining support', 'applying learning', and 'normalising caregiving'. Conclusions: The study highlighted several interrelated themes involving creating connections amongst caregivers with similar experiences, social learning, and supportive learning through group structure and facilitation. Many of the processes reflected those found in existing dementia caregiver intervention research. Recommendations included facilitating peer support groups and exploring whole-family approaches. [ABSTRACT FROM AUTHOR]

Objective: Our aim was to identify changes in healthcare utilization prior to a young-onset Alzheimer's disease diagnosis. Methods: In a retrospective incidence density matched nested case–control study using national health registers, we examined healthcare utilization for those diagnosed with young-onset Alzheimer's disease in Danish memory clinics during 2016–2018 compared with age- and sex-matched controls. Negative binomial regression analysis produced contact rate ratios. Results: The study included 1082 young-onset Alzheimer's disease patients and 3246 controls. In the year preceding diagnosis, we found increased contact rate ratios for all types of contacts except physiotherapy. Contact rate ratios for contacts with a general practitioner were significantly increased also > 1–5 and > 5–10 years before diagnosis. The highest contact rate ratios were for psychiatric emergency contacts (8.69, 95% CI 4.29–17.62) ≤ 1 year before diagnosis. Interpretation: Results demonstrate that young-onset Alzheimer's disease patients have increased healthcare utilization from 5 to 10 years prior to diagnosis. Awareness of specific alterations in health-seeking behaviour may help healthcare professionals provide timely diagnoses. [ABSTRACT FROM AUTHOR]

A diagnosis of young-onset dementia can pose a significant challenge for the clinician. We present a young patient with a very unusual presentation of Dementia with Lewy Bodies. The lack of motor symptoms and his marked apathy delayed his diagnosis. His symptoms were thought to be due to depression based on normal structural imaging and the psychiatric nature of his presentation. An extensive work-up was performed. Evidence of a structural neurodegenerative process was provided by the HMPAO-SPECT. Cardiac MIBG confirmed the diagnosis. [ABSTRACT FROM AUTHOR]

Behaviour changes (BCs) are common in young-onset dementia (YOD). Access to knowledgeable and age-appropriate support services is needed to assist with the appropriate management of BCs. We sought to investigate the types of YOD-related BCs that most commonly require support, the formal services being accessed for support, and the experiences of those seeking support in Australia. We employed a cross-sectional online questionnaire for individuals living with YOD as well as individuals providing informal or formal care for someone with YOD. Thirty-six questionnaire responses were recorded. Of the total sample, 83% reported YOD-related BCs requiring support, the most common being appetite/eating changes, followed by agitation/aggression and apathy/indifference. Seventy-six percent of these individuals had attempted to seek support from a formal service, with Dementia Australia, Dementia Support Australia, and general practitioners most commonly approached. Responses suggested that the support access pathway is suboptimal, with a lack of clarity about what services to approach for support and long wait times. Furthermore, 28% of participants had not gained access to support utilizing non-pharmacological strategies. Individuals who need support for YOD-related BCs demonstrated a high rate of help-seeking from formal support services; however, the support access pathway is slow, is difficult to navigate, and does not result in the best-practice management of BCs. Formal services resourced to provide efficient support with the implementation of behavioural strategies are needed, along with clear, accessible guidelines on the pathway to access them. [ABSTRACT FROM AUTHOR]

Abstract INTRODUCTION The goal of the present work was to assess the incidence of dementia with onset before the age of 65 years (i.e., young‐onset dementia [YOD]) and define the frequencies of young‐onset Alzheimer's disease (AD), frontotemporal lobar degeneration (FTLD), and dementia with Lewy bodies (DLB) in the general population. METHODS The study was conducted from January 1, 2019 to December 31, 2019 in Brescia province (population: 1,268,455). During the study period, all new YOD cases (incident YOD) were counted, and all patients’ records reviewed. The incidence was standardized to the Italian general population in 2019. RESULTS A total of 29 YOD patients were diagnosed. The age‐sex standardized incidence rate was 4.58 (95% confidence interval, 3.07–6.58) per 100,000 person‐years. No difference in incidence rate between YOD due to AD or FTLD (P = 0.83) and between sexes (P = 0.81) was observed. YOD incidence increased with age, reaching its peak after 60 years. DISCUSSION Presenting neurodegenerative YOD phenotypes encompasses both AD and FTLD. Improved knowledge on YOD epidemiology is essential to adequately plan and organize health services.

Abstract Social media can facilitate self-disclosure of a stigmatized identity. This mixed-methods study explores self-disclosure by people with dementia on social media, comparing patterns and purpose of use by those aged 65 and above versus those aged under 65. Of 143 internet-using respondents of an online survey, 77 (aged between 44 and 88 years) were users of social media. Facebook was the most commonly used platform (95%), followed by Twitter, Instagram, LinkedIn, YouTube, and TikTok. People with dementia aged under 65 used more platforms and used social media more frequently than older counterparts [χ 2 = 5.58, p = .031]. Content analysis of open-ended questions, validated and extended through qualitative interview data, showed younger users shared dementia-related information for purposes of advocacy and awareness whereas older users prioritized the dementia journey. Social media gives people with dementia a voice to share their experiences, raise awareness, and support themselves and other individuals affected by the condition. [ABSTRACT FROM AUTHOR]

Objectives: Vascular dementia (VD) is one of the more common types of dementia. Much is known about VD in older adults in terms of survival and associated risk factors, but comparatively less is known about VD in a younger population. This study aimed to investigate survival in people with young-onset VD (YO-VD) compared to those with late-onset VD (LO-VD) and to investigate predictors of mortality. Design: Retrospective file review from 1992 to 2014. Setting: The inpatient unit of a tertiary neuropsychiatry service in Victoria, Australia. Participants: Inpatients with a diagnosis of VD. Measurements and methods: Mortality information was obtained from the Australian Institute of Health and Welfare. Clinical variables included age of onset, sex, vascular risk factors, structural neuroimaging, and Hachinksi scores. Statistical analyses used were Kaplan–Meier curves for median survival and Cox regression for predictors of mortality. Results: Eighty-four participants were included with few clinical differences between the LO-VD and YO-VD groups. Sixty-eight (81%) had died. Median survival was 9.9 years (95% confidence interval 7.9, 11.7), with those with LO-VD having significantly shorter survival compared to those with YO-VD (6.1 years and 12.8 years, respectively) and proportionally more with LO-VD had died (94.6%) compared to those with YO-VD (67.5%), χ2(1) = 9.16, p = 0.002. The only significant predictor of mortality was increasing age (p = 0.001). Conclusion: While there were few clinical differences, and older age was the only factor associated with survival, further research into the effects of managing cardiovascular risk factors and their impact on survival are recommended. [ABSTRACT FROM AUTHOR]

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 (n = 547,70%) were diagnosed with dementia due to Alzheimer's disease (AD). Patients with Frontotemporal lobe dementia (FTD, n = 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. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to explore the journey to dementia diagnosis and reaction to the diagnosis from the perspective of people with young-onset dementia living in the community from diverse areas in Australia (metropolitan, regional, rural) and their family caregivers. Methods: Semi-structured interviews were conducted with community-dwelling people with early to moderate young-onset Alzheimer's disease (n = 8) or frontotemporal dementia (n = 5) and one person with both Alzheimer's disease and frontotemporal dementia, and family caregivers of community-dwelling people with young-onset Alzheimer's disease and/or frontotemporal dementia (n = 28). This study employed interpretive description. Thematic analysis was conducted for emergent themes, comparisons and interplay between themes. Findings: The journey to the diagnosis is characterised as involving an extensive period of the gradual worsening of symptoms, drawn out investigations, and difficulties facing the prospect of a diagnosis of young-onset dementia. Participants with young-onset dementia struggled to manage their symptoms and the process of seeking a diagnosis was often slow due to difficulties during the course of their medical investigations and feeling reluctance to face the possibility of having dementia. Once participants finally received the diagnosis of young-onset dementia, participants with young-onset dementia and their family caregivers experienced feelings of devastation and shock, in some cases denial and avoidance, and even, confirmation and relief at having received a diagnosis. In some instances, participants experienced more than one of these reactions. There was a profound realisation by participants that a diagnosis of young-onset dementia had serious implications on their life and future. Conclusion: The journey to diagnosis was found to be a drawn-out process and receiving the diagnosis was a shock for both people with young-onset dementia and their family caregivers. The findings highlight the significance of the role healthcare professionals play in both the diagnostic and post-diagnostic journey, particularly in terms of supporting patients with young-onset dementia and their family caregivers. [ABSTRACT FROM AUTHOR]

Objectives: People with dementia can face barriers when trying to access care after a diagnosis, particularly in young-onset dementia (YOD). Little is known about the effects of ethnicity on the use of anti-dementia medication and variations between age groups. The aim of this study was to analyze national data on variations in the uptake of anti-dementia medication between people with YOD and late-onset dementia (LOD). Design: Cross-sectional longitudinal cohort study. Setting: Data from the U.S. National Alzheimer's Coordinating Centre were obtained from September 2005 to March 2019. Participants: First visits of people with a diagnosis of Alzheimer's disease (AD) dementia, Lewy body dementia (LBD), and Parkinson's disease dementia (PDD) were included. Measurements: Logistic regression was used to analyze the effects of education and ethnicity on use of cholinesterase inhibitors and memantine, accounting for YOD/LOD, gender, living situation, severity stage, and comorbidities. Results: In total, 15,742 people with AD dementia and LBD/PDD were included, with 11,019 PwD having completed a first follow-up visit. Significantly more people with YOD used memantine than those with LOD, while fewer used cholinesterase inhibitors. PwD from minority ethnic backgrounds used memantine and cholinesterase inhibitors less often than those from a White ethnic background. Logistic regression analysis showed that ethnicity was a significant determinant of both memantine and cholinesterase inhibitors usage, while education was only a significant determinant for memantine usage. Conclusions: Findings highlight the impact of social factors on current usage of anti-dementia medication and the need for more resources to enable equitable use of anti-dementia medication. [ABSTRACT FROM AUTHOR]

Objectives: To compare survival and risk factors associated with mortality in common young‐onset dementias (YOD) including Huntington's disease. Methods: This retrospective cohort study included inpatients from an Australian specialist neuropsychiatry service, over 20 years. Dementia diagnoses were based on consensus criteria and Huntington's disease (HD) was confirmed genetically. Mortality and cause of death were determined using linkage to the Australian Institute of Health and Welfare National Death Index. Results: There were 386 individuals with YOD included. The dementia types included frontotemporal dementia (FTD) (24.5%), HD (21.2%) and Alzheimer's disease (AD) (20.5%). 63% (n = 243) individuals had died. The longest median survival was for those who had HD, 18.8 years from symptom onset and with a reduced mortality risk compared to AD and FTD (hazard ratio 0.5). Overall, people with YOD had significantly increased mortality, of 5–8 times, compared to the general population. Females with a YOD had higher standardised mortality ratio compared to males (9.3 vs. 4.9) overall. The most frequent cause of death in those with HD was reported as HD, with other causes of death in the other YOD‐subtypes related to dementia and mental/behavioural disorders. Discussion: This is the first Australian study to investigate survival and risk factors of mortality in people with YOD. YOD has a significant risk of death compared to the general population. Our findings provide useful clinical information for people affected by YOD as well as future planning and service provision. Key points: Dementia is a leading cause of death in Australia and the leading cause of death in females. There is limited mortality information pertaining to younger people with dementia.We investigated mortality and risk factors in young‐onset dementia, including Huntington's disease. Huntington's disease had the longest survival ‐ 18.8 years, with Alzheimer's disease, frontotemporal and vascular dementias having 11 and 13 years median survival. Young‐onset dementia conferred between 5 and 8 times increased risk of death compared to the general population.Young‐onset dementia is a fatal disease with shortened lifespan. Early identification and timely age‐appropriate services are necessary for these individuals. [ABSTRACT FROM AUTHOR]

A model of a virtual psychotherapeutic support group was developed for young-onset dementia (YOD; people with dementia under the age of 65) caregivers; one group for adult children and one for spouses. This pilot study evaluated the impact of support groups on YOD caregivers' psychosocial well-being, coping abilities, and knowledge. At post, psychosocial measures revealed an increase in the number of coping strategies rated as helpful among the 13 spousal and 14 adult children caregivers who completed the study. Adult children were observed to have a reduction in both the negative impact of caregiving and depression scores. Caregivers reported that being able to share experiences with other caregivers in similar circumstances helped them feel supported and less alone. The virtual support groups demonstrated the potential to reduce the negative impact of caregiving, especially among adult children, and showed that the groups could improve knowledge and capacity building for all caregivers. [ABSTRACT FROM AUTHOR]

Receiving a diagnosis of dementia before the age of 65 has a huge impact on everyday life. Previously, the disease trajectory has mainly been described from the perspective of older persons. However, young persons with dementia are confronted with specific challenges, influencing the type of life-changing events, or 'critical points' that they may experience. The aim of this study was therefore to describe experiences of persons recently being diagnosed with young-onset dementia. In total, 14 participants with dementia due to Alzheimer's disease (10 woman/4 men) with an average age of 59 were included in the study. Interviews were conducted within 2 months after receiving the diagnosis and analyzed using qualitative content analysis with an inductive approach, resulting in three categories: (1) A life changing moment, (2) An ongoing process, and (3) Remaining in control. The findings show that receiving such a diagnosis was experienced by participants as a life changing moment, followed by them seeking to come to terms with the diagnosis and reflecting on its meaning, in which various strategies were adopted to remain in control. The current study highlights three critical points considering the diagnosis of young-onset dementia that warrant special attention and provides insight into factors related to delay in healthy transitioning after receiving the diagnosis, as well as factors that may facilitate successful transitions. [ABSTRACT FROM AUTHOR]

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]

Objectives: We describe brain structural damage and cognitive profile evolution of an adult patient with 17q21.31 microduplication, a rare condition associated with psychomotor delay, behavioural disturbances and poor social interaction. Methods: A.B., 57 years old, male, displayed obsessive and repetitive behaviours, irritability, scarce hygiene and memory loss at disease onset. He had strong familiarity for adult-onset behavioural alterations (his father and sister) and neuropsychiatric conditions (his son). Blood and cerebrospinal fluid (CSF) samples revealed 17q21.31 microduplication, shared also by his son and sister, and raised CSF tau, respectively. He was hospitalized 1 year after disease onset and underwent an MRI scan and a neuropsychological assessment, the latter being repeated 7 months later. To quantitatively investigate patient's grey matter (GM) volume, 16 age- and education-matched male controls were selected and voxel-based morphometry analysis was performed. Results: During hospitalization, his behavioural profile was characterized by anosognosia, impulsivity, apathy and aggressiveness. Cognitive testing revealed main attentive-executive disturbances and difficulties in understanding non-literal language. Compared to controls, A.B. had greater GM atrophy mainly in the right hemisphere, involving amygdala, hippocampus, inferior/superior temporal gyri and temporal pole. He received a diagnosis of early onset dementia. After 7 months, he developed empathy loss, perseverative behaviour, changes in eating habits and worsening in executive-attentive abilities. Conclusions: In A.B., 17q21.31 microduplication caused a neurodegenerative condition with prevalent right temporal damage, raised CSF tau level, behavioural disturbances, memory impairment, attentive-executive and abstract language dysfunctions and fast disease progression, thus reflecting the complex interaction between such genetic substrate and clinical phenotypes. [ABSTRACT FROM AUTHOR]

Abstract 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

The gendered aspects of extraordinary demanding spousal caring for people with young-onset dementia have been scarcely researched. To analyze spouses' experiences of the meaning, content, and effort of intensive caring for spouses/partners with young-onset frontotemporal dementia (YO-FTD), concentrating on a female perspective. A qualitative Norwegian study using narrative interviews with 10 wives and 6 husbands were conducted in 2014 and 2015. The analysis resulted in four gendered main themes: Different caregiving periods, Distancing: experiencing a transformed spouse and relationship, Social isolation, and Needing assistance and relief. A case analysis of wives' and men's stories was applied, especially focusing on a wife's story, to examine the detailed interrelationships between life situation, caring demands, experiences, and reactions. Spousal care is influenced by gendered caring norms and roles. The study finds marked differences between wives and husbands in the meaning, content and sustainability of care, and needs for support vary. Wives endured more stress longer than husbands, with a greater emotional impact and negative health consequences, and their needs are more easily neglected. Husbands presented their needs more efficiently and obtained public relief earlier. Women may need more support earlier during different stages of caring for a spouse with YO-FTD. They need gender sensitive person-centered support to live their own lives and preserve their selves. [ABSTRACT FROM AUTHOR]

To explore communication and engagement in everyday situations between persons with young-onset dementia (YOD) living in a nursing home (NH) and the caregivers. The study draws on ethnographic methods aligned with participatory design. Three residents with YOD living in a NH and eight staff members were recruited. A narrative approach was used for data collection and analysis. Three narrative vignettes were developed representing everyday situations in which communication and engagement was enacted among residents and caregiver staff: (a) waiting for something to happen, (b) tensions about everyday communication, and (c) negotiating a combined living + working environment. The findings stress a paradoxical tension rooted in the NH as residence and workplace as well as place of calm and place of boredom. The everyday situations are interpreted differently from the perspective of the residents and staff. The identified paradox of planned and spontaneous situations influences communication and engagement in everyday life, and the potentiality for active engagement embedded in contexts of units for residents with YOD. The degree to which everyday activities and encounters are redefined and renegotiated is an important part of caregiving practices in NH settings for residents with YOD. [ABSTRACT FROM AUTHOR]

We examined amyloid-tau-neurodegeneration biomarker effects on cognition in a Southeast-Asian cohort of 84 sporadic young-onset dementia (YOD; age-at-onset <65 years) patients. They were stratified into A+N+, A- N+, and A- N- profiles via cerebrospinal fluid amyloid-β1-42 (A), phosphorylated-tau (T), MRI medial temporal atrophy (neurodegeneration- N), and confluent white matter hyperintensities cerebrovascular disease (CVD). A, T, and CVD effects on longitudinal Mini-Mental State Examination (MMSE) were evaluated. A+N+ patients demonstrated steeper MMSE decline than A- N+ (β = 1.53; p = 0.036; CI 0.15:2.92) and A- N- (β = 4.68; p = 0.001; CI 1.98:7.38) over a mean follow-up of 1.24 years. Within A- N+, T- CVD+ patients showed greater MMSE decline compared to T+CVD- patients (β = - 2.37; p = 0.030; CI - 4.41:- 0.39). A+ results in significant cognitive decline, while CVD influences longitudinal cognition in the A- sub-group. [ABSTRACT FROM AUTHOR]

Background and Objectives Young-onset dementias (YODs) are a set of progressive illnesses that are stressful for both persons with the diagnosis and their care-partners. Although the stressors differ based on their roles and individual experiences, both individuals are at risk for heightened emotional distress (e.g. depression and anxiety). Understanding the unique stressors for each partner and adaptive coping strategies to manage these stressors is important for informing individual and couples-based psychosocial interventions. Research Design and Methods We conducted open-ended individual interviews with persons with YOD (N = 12) and their care-partners (i.e. romantic partner; N = 17) over live video. We utilized a hybrid of deductive and inductive analysis techniques to extract individual-level themes and subthemes regarding stressors and adaptive coping strategies. Results Persons with YOD identified stressors including burden of YOD symptoms, loss of familial roles, resentment toward partner, isolation, and fear of the future. Care-partners identified stressors including managing their partners' symptoms, increased responsibilities, caregiving role, loss of intimacy, social isolation, and grief. For adaptive coping strategies, persons with YOD endorsed use of acceptance, promotion of independence, social support, and engaging in pleasurable activities. Care-partners endorsed value of learning about the diagnosis, using resources, optimism, social support, and self-care. Discussion and Implications Findings highlight the unique experiences of persons with YOD and their care-partners. Identified themes can be used to inform role-specific psychosocial interventions for both individuals and couples coping with YOD. [ABSTRACT FROM AUTHOR]

The distinctive differences in clinical needs and disease trajectory between people with young-onset (YOD) and late-onset dementia (LOD) make dementia palliative care unique. Limited studies have reported on the differences in palliative care needs between YOD and LOD, and the optimal time point to introduce palliative care in YOD remains controversial. We performed a systematic review to summarize key issues surrounding palliative care in YOD and highlight unmet needs in this pertinent area. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we searched the PubMed database for all studies published between January 2000 and July 2022 that reported on palliative care in YOD. Of 32 records identified, 8 articles were eligible for inclusion. The top 3 themes extracted centered around (1) clinical differences between YOD and LOD, (2) symptoms and causes of death in end-stage YOD, and (3) the importance of early advanced care planning (ACP). YOD diagnosis is often delayed and people with YOD have fewer somatic comorbidities but more neuropsychiatric symptoms, longer survival times, and a more malignant disease course. People with YOD and their families face unique psychosocial challenges when symptoms start at a younger age. End-stage YOD is not dissimilar to LOD where patients suffer from a broad spectrum of physical and psychological symptoms requiring palliation. Early initiation of ACP discussion is crucial in YOD given the more rapid progression of disease affecting cognition and decision-making capacity; however, rates of ACP completion in YOD remain low. Given the complex care needs and more rapid disease trajectory in YOD, palliative care in YOD should be considered from the time of diagnosis, and to be incorporated into routine dementia care. [ABSTRACT FROM AUTHOR]

Behaviour changes (BCs) are common in young-onset dementia (YOD). Access to knowledgeable and age-appropriate support services is needed to assist with the appropriate management of BCs. We sought to investigate the types of YOD-related BCs that most commonly require support, the formal services being accessed for support, and the experiences of those seeking support in Australia. We employed a cross-sectional online questionnaire for individuals living with YOD as well as individuals providing informal or formal care for someone with YOD. Thirty-six questionnaire responses were recorded. Of the total sample, 83% reported YOD-related BCs requiring support, the most common being appetite/eating changes, followed by agitation/aggression and apathy/indifference. Seventy-six percent of these individuals had attempted to seek support from a formal service, with Dementia Australia, Dementia Support Australia, and general practitioners most commonly approached. Responses suggested that the support access pathway is suboptimal, with a lack of clarity about what services to approach for support and long wait times. Furthermore, 28% of participants had not gained access to support utilizing non-pharmacological strategies. Individuals who need support for YOD-related BCs demonstrated a high rate of help-seeking from formal support services; however, the support access pathway is slow, is difficult to navigate, and does not result in the best-practice management of BCs. Formal services resourced to provide efficient support with the implementation of behavioural strategies are needed, along with clear, accessible guidelines on the pathway to access them.

Objectives To explore communication and engagement in everyday situations between persons with young-onset dementia (YOD) living in a nursing home (NH) and the caregivers. Methods The study draws on ethnographic methods aligned with participatory design. Three residents with YOD living in a NH and eight staff members were recruited. A narrative approach was used for data collection and analysis. Findings Three narrative vignettes were developed representing everyday situations in which communication and engagement was enacted among residents and caregiver staff: (a) waiting for something to happen, (b) tensions about everyday communication, and (c) negotiating a combined living + working environment. The findings stress a paradoxical tension rooted in the NH as residence and workplace as well as place of calm and place of boredom. The everyday situations are interpreted differently from the perspective of the residents and staff. Conclusion The identified paradox of planned and spontaneous situations influences communication and engagement in everyday life, and the potentiality for active engagement embedded in contexts of units for residents with YOD. The degree to which everyday activities and encounters are redefined and renegotiated is an important part of caregiving practices in NH settings for residents with YOD.

Introduction: Dementia occurring in young people may be difficult to recognize. We compared the time to diagnosis between young- (YOD, age < 65) and late-onset dementia (LOD).Methods: Time between the onset of symptoms and the diagnosis was measured in YOD and LOD patients consecutively seen in a cognitive neurology clinic. Multivariable regression analyses were performed to identify determinants of time to diagnosis.Results: Mean time to diagnosis in 95 YOD patients was 11.2 months longer than in 73 LOD patients (p = 0.022). The delay was driven by a longer time taken by YOD patients to be seen in the specialist centre, which in turn was related to the presence of language disturbances and coexisting depression.Discussion: Young people take longer than elderly people to receive a dementia diagnosis because they take longer to be referred to dementia specialist centres. More awareness on YOD is needed in primary care and the public. [ABSTRACT FROM AUTHOR]

Background: Dementia among younger people is rapidly emerging as a global health concern; however, comprehensive research on its shifting burden trends remains insufficient., Methods: Data on the prevalence, incidence, mortality, and disability-adjusted life years (DALYs) associated with dementia occurring in individuals <70 years were extracted from the Global Burden of Diseases, Injuries, and Risk Factors Study 2021. Average annual percentage changes (AAPCs) were calculated to assess trends in age-specific rates (ASRs), including age-specific prevalence rates (ASPRs), age-specific incidence rates (ASIRs), age-specific mortality rates (ASMRs), and age-specific DALY rates (ASDRs) while young-onset dementia (YOD) burden trends were analyzed. The correlation between ASR/AAPC and the sociodemographic index (SDI) was evaluated., Findings: In 2021, the global prevalence of dementia in individuals <70 years increased by 122.33%, with a 128% increase in new cases since 1990. Concurrently, deaths and DALYs of individuals <70 years with dementia rose by 119.28% and 119.77%, respectively. The AAPCs of YOD ASRs during 1990-2021 initially increased and then decreased with increasing SDI levels, with the highest AAPCs of ASPR (2.20 [95%CI: 2.08-2.32] per 100,000), ASIR (2.25 [95%CI: 2.06-2.45] per 100,000), ASMR (2.04 [95%CI: 1.93-2.15] per 100,000), and ASDR (2.06 [95%CI: 1.99-2.13] per 100,000) observed in middle-SDI levels. Additionally, females <70 years bore a higher burden of dementia globally, and gender differences are still widening., Interpretation: The growth rate of YOD is accelerating, particularly in the middle to high SDI region with females bearing a disproportionately higher burden of YOD., Funding: This work was supported by grants from the National High level Hospital Clinical Research Funding, CAMS Innovation Fund for Medical Sciences, and the National Natural Science Foundation of China., Competing Interests: No potential conflicts of interest relevant to this article were reported., (© 2024 The Author(s).)

Introduction: Persons with young-onset dementia (YOD) are confronted with specific challenges. Due to the neurodegenerative nature of the disease, people diagnosed with YOD face many changes with different consequences, for example, regarding their life perspective. These changes can give rise to transition processes and strategies for coping, hopefully stimulating well-being and acceptance. However, this might not always be the case, and support may be warranted. Our aim was to describe the experiences of those living with YOD due to Alzheimer's disease (AD) and identify signs of transitions during the first year after diagnosis., Method: In this qualitative interview study, we explore the experiences of younger persons living with AD. Thirteen participants under the age of 65 years (nine female and four male; mean age: 57) were included 1 year after being diagnosed with AD. The interviews were transcribed verbatim and analyzed using qualitative content analysis with a deductive approach. To gain a deeper understanding of the data, Meleis's transitions theory was used as a theoretical framework., Results: Two categories were identified: 'Life has changed' and 'Mastering a changed life situation'. One year after diagnosis, participants described how they experienced a changed life situation, changing symptoms, a loss of meaningful activities and an increased risk of social isolation. Furthermore, living with uncertainty about the future caused feelings of being disconnected. Awareness was described as an important aspect of coping with YOD and progressing in the transition process. Participants also highlighted the importance of support from others., Conclusion: The results suggest that preventing social isolation is important in facilitating healthy transitions. Therefore, professionals need to identify signs of transitions and be aware of the complexity of coping with YOD, thereby helping to prevent unwanted responses to change and facilitate a healthy transition process., Patient or Public Contribution: The findings are based on interviews with 13 persons with YOD and provide insight into experiences of living with YOD., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)