Young-onset Dementia Research Articles

Gaps in biomedical research in frontotemporal dementia: A call for diversity and disparities focused research.

Frontotemporal dementia (FTD) is one of the leading causes of young-onset dementia before age 65, typically manifesting as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). Although FTD affects all populations across the globe, knowledge regarding the pathophysiology and genetics derives primarily from studies conducted in North America and Western Europe. Globally, biomedical research for FTD is hindered by variable access to diagnosis, discussed in this group's earlier article, and by reduced access to expertise, funding, and infrastructure. This perspective paper was produced by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART) and discusses the field's current status on the cross-cultural aspects of basic and translational research in FTD (including that focused on epidemiology, genetics, biomarkers, and treatment). It subsequently provides a summary of gaps and needs to address the disparities and advance global FTD biomedical research.

Insights into young-onset dementia hospitalizations: An 8-year nationwide study using administrative data

ObjectiveTo characterize all Portuguese public hospitalizations of patients aged < 65 years with a primary or secondary diagnosis of dementia, based on ICD-9-CM coding. MethodsA retrospective observational study was conducted using a nationwide database encompassing all hospitalizations occurred in Portuguese mainland public hospitals with discharge from 2008 to 2015. Hospitalizations of patients aged 35–64 years with primary or secondary diagnoses of dementia were selected based on ICD-9-CM codes 290.1X-290.4X, 291.2, 292.82, 294.1X, 294.2X, 331.0, 331.1X, 331.82, 333.4 and 046.1, excluding diagnostic codes 317-319, 330.X, 343, 758.0-758.3 and 759.3. Information on age, sex, primary diagnosis, comorbidities (secondary diagnosis), type of admission, length of stay (LoS), in-hospital mortality, suicide attempts, discharge destination, readmissions and dementia etiology was collected. ResultsFrom 7971 hospitalizations, for 5682 inpatients, the median age was 57.3 years (SD±6.5) and 61.8% were of male patients. Vascular dementia was the most prevalent etiology, followed by Alzheimer's disease. Most admissions were urgent and had a primary diagnosis of ‘Delirium, dementia and other cognitive disorders’, followed by pneumonia and alcohol-related disorders. Dementia, cerebrovascular disease and diabetes were the most common comorbidities. Overall, 55.4% of admissions were first-time admissions during the study period and the median LoS was 10.0 days (Q1;Q3: 5.0;20.0). Suicide attempts were recorded in 0.6% of the episodes. The in-hospital mortality rate was 9.2% and most patients were discharged home (80.2%). ConclusionsThis study describes the complexity and strain of young-onset dementia hospitalizations providing a detailed overview and recommendations for further research and tailored interventions.

Global burden of dementia in younger people: an analysis of data from the 2021 Global Burden of Disease Study

Dementia among younger people is rapidly emerging as a global health concern; however, comprehensive research on its shifting burden trends remains insufficient. 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. 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. The growth rate of YOD is accelerating, particularly in the middle to high SDI region with females bearing a disproportionately higher burden of YOD. 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.

Understanding Family Resilience in Young-Onset Dementia: A Multiple Case Study.

Through the lens of family resilience, exploring the experiences of families in adapting to young-onset dementia. Qualitative multiple case study. This study examined the family as a single unit of analysis, focusing on a triad including a person with young-onset dementia, their spouse and their adult child. Three family triads were included. Data collection took place between April 20 and July 4, 2023, in South Korea. Data analysis involved a two-stage process, consisting of a directed content analysis based on the family resilience framework within cases, followed by a cross-case analysis to identify themes and unique patterns across cases. The study identified six key themes: (1) Stressors due to a young-onset dementia diagnosis, (2) perception of the young-onset dementia diagnosis, (3) degree of emotional connection, (4) coping approach to young-onset dementia, (5) availability and utilisation of external resources and (6) patterns of adaptation. Furthermore, our research uncovered the interplay between themes, and how adaptations patterns of families formed either resilient or non-resilient. Our triadic approach uncovered hidden family dynamics, emphasising family-centred care. This study provides insights into unique challenges and diverse adaptation processes, suggesting tailored interventions. This study emphasises the importance of family-centred care in young-onset dementia, recognising all family members as crucial clients. Also, we suggest that healthcare professionals should develop tailored treatment plans that reflect the unique needs of each family. This study presents the unique experiences of young-onset dementia families, laying the foundation for developing effective support strategies that reflect these insights. Additionally, we emphasise the utilisation of external resources and their existence, providing a comprehensive research direction. Our research follows the EQUATOR guidelines, specifically adhering to the COREQ guidelines. No Patient or Public Contribution.

A mixed methods evaluation of the music and psychology and social connections (MAPS) pilot - A dyadic intervention for couples affected by young-onset dementia.

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. 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. 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. 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.

Stakeholder Consultation to Establish Research Priorities for Specialist Dementia Nursing in the United Kingdom.

In the United Kingdom, there are a growing number of specialist dementia nurses called Admiral Nurses. Admiral Nurses, supported in their professional development and clinical supervision by the charity Dementia UK, work with families affected by dementia using a relationship-centred approach. Given the growing need for this type of support, Dementia UK is committed to research that will expand the evidence base for Admiral Nursing. This article describes a stakeholder consultation to identify research priorities for Admiral Nursing for the next 3 years (2023-2026). We adopted a participatory approach using an adapted Nominal Group Technique and priority-setting workshop. All elements of the process were designed in consultation with a steering group comprising a range of stakeholders, including people with dementia, carers, Admiral Nurses, Dementia UK staff and researchers. Stakeholders were identified as those who were likely to be affected by or interested in the emerging research priorities. Nominal groups were held both face-to-face and online. A total of 144 people shared their research priorities. Data generated through each nominal group were thematically analysed and then ranked in order of priority. Four themes reflecting research priority areas were taken to a priority-setting workshop for consideration. This resulted in three research priorities for Admiral Nursing: (1) people with dementia who live alone and carers who provide support from a distance; (2) people living with young onset and rarer dementia and their families; and (3) people living with multiple health conditions alongside dementia, including mental health problems. Risk, diversity and the effectiveness of Admiral Nursing were strands that ran throughout these themes. We identified shared research priorities for Admiral Nursing using a rigorous, consensus-driven approach involving key stakeholders. These priorities reflect a desire to ensure that Admiral Nursing services reach the most vulnerable people living with dementia and their families and respond to the widening health and social care inequalities faced by this group. People with dementia and carers were involved in the design of this process as members of our steering group and through consultation on our initial plans with Dementia UK's Lived Experience Advisory Panel (LEAP). People living with dementia and carers also participated in consultation groups to share their views on research priorities. All stakeholders were invited to share feedback on the themes as part of the analysis and interpretation of the priorities, and a meeting was held with LEAP to discuss the emerging priorities.

"It's just getting the word out there": Self-disclosure by people with young-onset dementia.

Sharing a dementia diagnosis with others is a prerequisite to accessing important support for social, cognitive, and physical activity. However, due to the stigma associated with dementia, individuals may be hesitant to disclose their diagnosis. Despite the importance of this issue, there is limited research on personal experiences with sharing one's diagnosis. This study explored how people with young-onset dementia disclose their diagnosis to other people, also known as self-disclosure, and how time affects self-disclosure. We conducted an exploratory qualitative study, using semi-structured interviews with nine people with young-onset dementia living in the United Kingdom (UK). A narrative approach to analysis was applied, focusing on understanding the core narratives, themes, tone, and imagery of each participant's narratives as well as providing a cross-case analysis to identify patterns across narratives. Participants openly disclosed their diagnosis, accepting it as an illness that did not define their identity. Several were met with stigmatizing reactions, which affected their levels of openness, and a lack of understanding, which caused shrinking social networks for some. Peer support groups, advocacy activities, and strategic concealment were used to support self-disclosure. This study provides a holistic understanding of people with young-onset dementia's experiences with self-disclosure and how these evolved. Policies should prioritize the creation of dementia-friendly communities, while recommendations for practice include integrating empowerment interventions and peer support into post-diagnostic support. These efforts will support individuals in their self-disclosure journey, promote social engagement and reduce stigma.

Associations of combined accelerated biological aging and genetic susceptibility with incident dementia: a prospective study in the UK Biobank

BackgroundAccelerated biological aging has been verified to be a critical risk factor for a number of age-related diseases, but its role in dementia remained unclear. Whether it modified the effects of genetic factors was also unknown. This study evaluated the associations between accelerated biological aging and dementia and the moderating role of accelerated biological aging in the genetic susceptibility to the disease.MethodsWe included 200,731 participants in the UK biobank. Nine clinical blood biomarkers and chronological age were used to calculate Phenotypic age acceleration (PhenoAgeAccel), which is a novel indicator for accelerated biological aging. The associations of PhenoAgeAccel with dementia, both young-onset and late-onset dementia, were assessed by Cox proportional hazard models. Apolipoprotein E (APOE) alleles and polygenic risk scores (PRS) were used to evaluate the genetic risk of dementia. The interactions between genetic susceptibility and biological aging were tested on both multiplicative and additive scales.ResultsThese findings showed individuals who were in the highest quartile of PhenoAgeAccel had a higher risk with incidence of dementia compared to individuals in the lowest quartile of PhenoAgeAccel (HR: 1.145 (95% CI: 1.050, 1.249)). Individuals with biologically older had a higher risk of dementia than individuals with biologically younger (HR: 1.069 (95% CI: 1.004, 1.138)). Furthermore, compared to individuals with biologically younger and low APOE ε4-related genetic risk, individuals with biologically younger and high APOE ε4-related genetic risk (HR:3.048 (95% CI: 2.811, 3.305)) had a higher risk of dementia than individuals with biologically older and high APOE ε4-related genetic risk (HR: 2.765 (95% CI: 2.523, 3.029)). Meanwhile, referring to low dementia PRS and biologically younger, the risk of dementia increased by 72.7% (HR: 1.727 (95% CI: 1.538, 1.939) in the biologically younger and high PRS group and 58.7% (HR: 1.587 (95% CI: 1.404, 1.793) in the biologically older and high PRS group, respectively. The negative interactions between PhenoAgeAccel with APOE ε4 and PRS were also tested on the additive scale.ConclusionsAccelerated biological aging could bring the extra risk of dementia but attenuate the effects of genetic risk on dementia. These findings provide insights for precise prevention and intervention of dementia.

Transitions: Living With Young-Onset Alzheimer's Disease: A Qualitative Interview Study.

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. 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. 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. 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. The findings are based on interviews with 13 persons with YOD and provide insight into experiences of living with YOD.

Association of Young-Onset Dementia with Pre-Existing Peripheral Vestibular Disorders.

The relationship between young-onset dementia and peripheral vestibular disorders remained largely unknown although this association was observed in the older population. 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. 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). 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. 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.

Transitions of care for people living with dementia – insights using linked data

Objective People living with dementia have increasing care needs as their condition progresses, and tend to be high users of health and aged care. Linked data provide an opportunity to better understand transitions between services, to enable quality and timely care. Approach The pilot study used a new multi-source enduring linked dataset to analyse the use of health and residential aged care by Australians living with younger onset dementia between 2011–2016. The subsequent study focused on movements between hospital and residential aged care for older Australians who were hospitalised in 2017. ResultsThe younger onset dementia cohort comprised 5,400 Australians aged 30–69. More than half (58%) the cohort had moved from the community into residential aged care by the end of the study period. Of these, 21% had a hospital stay while living in the community that ended with entry to residential aged care. This important transition point was analysed further using a dementia cohort of 79,000 people aged 65 and over. One in 4 people (23%) with dementia who were living in the community moved into residential aged care within 7 days of a hospital stay. This group spent 20 days longer in hospital than other older people. People living in aged care were less likely than those in the community to return to hospital during the following year. ConclusionsThese results can help inform planning of community-based dementia support services, improve coordination of care, and investigate sources of delay for people awaiting entry to aged care.

Young Onset Dementia in New South Wales, Australia in 1891: What has Changed Since Then?

This study aimed to determine the prevalence and types of young onset dementia (YOD) in New South Wales (NSW), Australia, in 1891 with comparisons to 21st century estimates. Changes might inform future service planning for persons with YOD. Medical case books of two Hospitals for the Insane were examined at the State Archives and clinical and sociodemographic information extracted of persons who were under the age of 65 in April 1891, when a NSW Census occurred, and were given a dementia diagnosis or had symptoms consistent with dementia. Consensus 21st century 'probable' and 'possible' all cause dementia and major neurocognitive disorder diagnoses were determined by two psychiatrists. Prevalence estimates of moderate-severe dementia were determined and compared with 21st century estimates and dementia types. Of 161 potential dementia cases, 123 were given a consensus 'probable' dementia diagnosis, 28 a 'possible' dementia diagnosis, and ten were given a non-dementia diagnosis, with 'all cause dementia' and 'major neurocognitive disorder' diagnoses identical. Most dementia cases were male (n=119, 78.8%). 'Unspecified dementia' was the most frequent diagnosis (n=47, 31.1%), followed by dementia secondary to syphilis (n=35, 23.2%), epileptic dementia (n=30, 19.9%), alcohol-related dementia (n=17, 11.3%), and mixed dementia (n=16, 10.6%). Epileptic dementia had the youngest average age of admission (34.9years). Other than epileptic dementia, all other dementia types were more frequent in males. Prominent clinical symptoms included neurological signs (n=79, 52.3%), psychosis (n=77, 51.0%), agitation (n=75, 49.7%), and aggression (n=45, 29.8%). Most dementia cases either died in hospital (n=79, 52.3%) or were transferred to a long stay hospital (n=57, 37.7%). The estimated point prevalence of YOD in persons aged 30-59 in 1891 (86 per 100,000) was higher than current Australian and global estimates in this age group due to the high rates in males (126per 100,000), but in those aged 60-64, the prevalence in 1891 (159per 100,000) was much lower than current estimates. This first examination of YOD in the nineteenth century found high rates of dementia in those under the age of 60 compared with current estimates, particularly in men aged between 30 and 59years old, and largely due to syphilis, alcohol and epilepsy, conditions that are now treatable and thus demonstrating the potential of effective treatments for YOD.

Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.

People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes-the EMBED-Care Framework. A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings.

My experience of person-centered and personalized care in early-stage primary progressive aphasia.

Primary progressive aphasia (PPA) is a neurodegenerative brain disorder characterized by declining language ability. It is a rare, often young-onset dementia with a devastating impact on the work and personal activities of those affected. At present there is no cure or disease-modifying therapy for PPA nor any way to arrest or slow the underlying progressive brain degeneration. Throughout the course of the condition any treatment must therefore be palliative-designed to manage symptoms and improve the quality of life of the affected person. The majority of those affected receive little or no follow-up care after diagnosis, particularly in the early stage of the disease. There is very little information in the medical literature about person-centered care designed to improve the quality of life of people with PPA written from the perspective of those living with this condition. I received an early and accurate clinical diagnosis of the nonfluent/agrammatic variant of PPA, supported by imaging. I am fortunate to have benefited from exemplary individualized care from a multidisciplinary medical team from the onset of my difficulties with language. In this paper, I discuss my lived experience of all aspects of this personalized and person-centered care, describing how it was founded on shared decision-making and a holistic, dementia-inclusive approach encompassing the physical, mental, emotional, psychosocial and spiritual dimensions of living with an incurable neurodegenerative disease.

Navigating the Journey of Living with Young-Onset Dementia: Experiences of Spousal Caregivers.

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. 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. 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. 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. 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.

Development of a Best Practice Guidance on Online Peer Support for People with Young-Onset Dementia.

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.

Understanding employee experiences of developing younger onset dementia within the workplace: A scoping review.

There is limited information focussing on the perspectives of persons with younger onset dementia (YOD) in employment. This poses challenges for supporting this demographic within the workplace and during their transition to retirement. The aim of this scoping review is to address the identified need to ascertain what is known about the perspectives of employees with YOD. Records were included if they: considered working-aged persons who received a diagnosis of YOD whilst employed or soon after ceasing employment; considered the perspective of the person with YOD; and were published in English. Four databases (CINAHL, PubMed, Embase, Cochrane Library) were systematically searched, and grey literature was sought using the Google Scholar search engine. Using PRISMA-ScR guidelines, two reviewers screened the title/abstract then full text of identified documents. Disagreements were resolved with a third reviewer. Research papers were narratively synthesised, thematically analysed, and critically appraised. Fourteen peer-reviewed research papers, and nineteen grey literature items were included in the review, with research papers found to be of reasonably high methodological quality. Five themes were identified, describing the experiences of employees with YOD: (1) Trying to manage difficulties prior to diagnosis; (2) Disclosure at the point of diagnosis; (3) Reasonable adjustments; (4) Employment cessation; and (5) Regaining meaningful roles following retirement. Findings revealed evidence for an emerging understanding of the lived experience of developing YOD within the workplace; however, further research is needed regarding the capabilities and support needs for persons with YOD to influence workplace policies and practices.

The Design of Health Promoting Outdoor Environments for People with Young-Onset Dementia-A Study from a Rehabilitation Garden.

Health-promoting outdoor environments designed for people living with dementia (PLwD) has proved to be an effective non-pharmacological intervention for treatment of symptoms and improved well-being. However, for individuals with Young-Onset Dementia (YOD), who have particular symptoms and needs, the content and design of these environments are underexplored. This study aimed to explore the needs of individuals with YOD in a garden setting, to generate design-related knowledge for 'dementia-friendly' outdoor environments, while contributing to the field of Evidence-Based Design (EBD). An 8-week long nature-based program was carried out in Alnarp's rehabilitation garden, a specifically developed garden based on research from e.g., landscape architecture, environmental psychology and medical science. The study used a triangulation of qualitative methods including six participants with YOD and a multidisciplinary team of five staff members. Content analysis was used for all gathered data, including 17 semi-structured interviews with participants with YOD and with staff. Data collection and analysis was performed based on the evidence-based Quality Evaluation Tool (QET). The study led to a target group adapted version of the QET for people with YOD containing 20 developed environmental qualities for designers to pursue in therapeutic gardens, including the additional quality of Calmness. A progression was noted, as a result of perceived positive effects during the intervention, indicating possible change and development of the group's needs and preferences in the outdoors.

Young onset dementia and driving cessation: a scoping review of lived experiences

BackgroundDriving cessation is one of the most challenging life transitions, associated with multiple negative consequences for individuals living with late-onset dementia. This paper extends the literature as to date there is no published review that details the experiences of people living with young onset dementia (“YOD”).MethodsA comprehensive search of the literature was conducted using the scoping review methodology.ResultsTen studies were included for full text review of 1634 initially identified through database searching. The results of the included articles indicated areas of concern for people living with YOD and their family members including, loss of independence; role change; threat to self-identify; feelings of isolation, grief; acceptance; predictors of driving cessation.ConclusionThere is a lack of robust evidence related to driving cessation and the experiences of people living with YOD. No published paper reported psychosocial interventions specifically targeted at supporting persons with YOD through driving cessation.

Clinical application of whole genome sequencing in young onset dementia: challenges and opportunities.

Young onset dementia (YOD) by its nature is difficult to diagnose. Despite involvement of multidisciplinary neurogenetics services, patients with YOD and their families face significant diagnostic delays. Genetic testing for people with YOD currently involves a staggered, iterative approach. There is currently no optimal single genetic investigation that simultaneously identifies the different genetic variants resulting in YOD. This review discusses the advances in clinical genomic testing for people with YOD. Whole genome sequencing (WGS) can be employed as a 'one stop shop' genomic test for YOD. In addition to single nucleotide variants, WGS can reliably detect structural variants, short tandem repeat expansions, mitochondrial genetic variants as well as capture single nucleotide polymorphisms for the calculation of polygenic risk scores. WGS, when used as the initial genetic test, can enhance the likelihood of a precision diagnosis and curtail the time taken to reach this. Finding a clinical diagnosis using WGS can reduce invasive and expensive investigations and could be cost effective. These advances need to be balanced against the limitations of the technology and the genetic counseling needs for these vulnerable patients and their families.