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

OBJECTIVES: 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. METHODS: 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. RESULTS: 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 (34.9 years). 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 (126 per 100,000), but in those aged 60-64, the prevalence in 1891 (159 per 100,000) was much lower than current estimates. CONCLUSIONS: 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 59 years old, and largely due to syphilis, alcohol and epilepsy, conditions that are now treatable and thus demonstrating the potential of effective treatments for YOD.

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.

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

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.

Body Composition, Vascular Health, Cardiorespiratory Fitness, Lung Function, Muscle Architecture, and Physical Activity in People with Young Onset Dementia: A Case-Control Study.

BACKGROUND: Body composition, blood pressure, estimated maximal oxygen uptake (VO2max), lung function, physical activity, muscle architecture, and endothelial function had not previously been examined in people with young onset dementia. Therefore, the study measured these variables in a young onset dementia group, compared them to age-matched controls. METHODS: Estimated VO2max (via the Astrand-Rhyming test), body composition, blood pressure, lung function (via spirometry), muscle architecture (via ultrasonography) and endothelial function (via flow mediated dilation) were assessed. Physical activity was measured using ActiGraph accelerometers for 7 days. RESULTS: We recruited 33 participants (16 young onset dementia, 17 controls). The young onset dementia group had shorter fascicle lengths of the vastus lateralis, were sedentary for longer over a seven-day period, and completed less moderate-vigorous physical activity than controls (p=0.028, d=0.81; large effect, p=0.029, d=0.54; moderate effect, and p=0.014, d=0.97; large effect, respectively for pairwise comparisons). Pairwise comparisons suggest no differences at the p<0.05 level between young onset dementia and controls for estimated VO2max (despite a moderate effect size [d=0.66]), height, body mass, BMI, blood pressure, light physical activity, lung function, muscle thickness, pennation angle, or endothelial function. CONCLUSION: This study highlights differences between people with young onset dementia and controls, underscoring the need for multicomponent exercise interventions. Future interventions should target muscle architecture, increase moderate-vigorous physical activity, and reduce sedentariness, with the goal of improving quality of life and promoting functional independence.

A Systematic Review of Palliative Care Needs in Young-Onset Dementia.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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

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.

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

INTRODUCTION: 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. AREAS COVERED: 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. EXPERT OPINION: 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.

Creating and Reliving the Moment: Using Musical Improvisation and Care Aesthetics as a Lens of Connection and Self-Expression for Younger People Living with Dementia.

Musical improvisation is a generative process of spontaneously creating music 'in the moment'. For people with young onset dementia, musical improvisation provides an extended opportunity for creative self-expression and connection to one's own body and life story. Using visual research methods, including video elicitation interviews, this paper explores the 'in the moment' musical experiences of five people living with young onset dementia who took part in a 15-week improvised music-making programme (Music in Mind). We frame the exploration of the group's musical experiences through the emerging lens of 'care aesthetics'-a concept that identifies the sensory relations and embodied practices between two (or more) people in a caring relationship. In the context of this analysis, we look to the caring practices by, with, and between people living with dementia, their family members, and the musicians who lead the programme and the relationship of these practices to feelings of self-expression and meaningful connection. Musical improvisation has the potential to support the psychological, social, and spiritual wellbeing of people living with young onset dementia. In applying a lens of care aesthetics, it is possible to observe the micro-level experiences of people living with dementia and their family carers.

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.

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

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.

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

BACKGROUND: Driving 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"). METHODS: A comprehensive search of the literature was conducted using the scoping review methodology. RESULTS: Ten 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. CONCLUSION: There 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.

Prescription medication use in the 10 years prior to diagnosis of young onset Alzheimer's disease: a nationwide nested case-control study.

BACKGROUND: Patients with young onset Alzheimer's disease (YOAD) face long diagnostic delays. Prescription medication use may provide insights into early signs and symptoms, which may help facilitate timely diagnosis. METHODS: In a register-based nested case-control study, we examined medication use for everyone diagnosed with YOAD in a Danish memory clinic during 2016-2020 compared to cognitively healthy controls. Prescription medication use were grouped into 13 overall categories (alimentary tract and metabolism, blood and blood forming organs, cardiovascular system, dermatologicals, genitourinary system and sex hormones, systemic hormonal preparations, antiinfectives for systemic use, antineoplastic and immunomodulating agents, musculo-skeletal system, nervous system, antiparasitic products, respiratory system, and sensory organs). Further stratifications were done for predetermined subcategories with a use-prevalence of at least 5% in the study population. Conditional logistic regression produced odds ratios, which given the use of incidence-density matching is interpretable as incidence rate ratios (IRRs). The association between prescription medication use and subsequent YOAD diagnosis was examined in the entire 10-year study period and in three time-intervals. RESULTS: The study included 1745 YOAD cases and 5235 controls. In the main analysis, several overall categories showed significant associations with YOAD in one or more time-intervals, namely blood and blood forming organs and nervous system. Prescription medication use in the nervous system category was increased for YOAD cases compared to controls already 10->5 years prior to diagnosis (IRR 1.17, 95% CI 1.05-1.31), increasing to 1.57 (95% CI 1.39-1.78) in the year preceding diagnosis. This was largely driven by antidepressant and antipsychotic use, and especially prominent for first-time users. CONCLUSIONS: In this study, medication use in several categories was associated with YOAD. Onset of treatment-requiring psychiatric symptoms such as depression or psychosis in mid-life may serve as potential early indicators of YOAD.

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

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.

Navigating Both Roles: A Photovoice Exploration of the Young Adult Balancing Daughterhood and Caregiving for a Mother With Young-Onset Dementia.

Young adults thrust into the role of caregiving for parents with young-onset dementia (YOD) face unique challenges during their formative years. While existing research acknowledges the crucial role of young adult caregivers, a gap persists in understanding how this group experiences and redefines their identity amidst these circumstances, along with the psychological and societal challenges encountered. This knowledge deficit hinders the identification of suitable social support, adversely affecting the personal growth and well-being of these young adult caregivers. In this single-case study, we used a combination of a semi-structured interview and photovoice to explore the journey of a 19-year-old caregiver, Alice, whose mother had been diagnosed with dementia in the preceding 3 years. Through this unique perspective, we aimed to illuminate how caregiving for a mother with YOD may profoundly redefine familial roles and relationships. Over 3 months, Alice captured significant life moments through photography, selecting meaningful images for bi-weekly meetings. These images served as pivotal themes, triggering in-depth conversations during subsequent interviews to provide nuanced insights into her life experiences. Findings reveal four major themes faced by a young caregiver: (1) challenges adapting to an unexpected role, (2) navigating the complex emotional terrain of losing a loved one to YOD, (3) prioritizing the well-being of the healthy parent, and (4) expressing a profound desire for both informal and formal support. These results underscore the intricate identity and emotional challenges faced by young adult caregivers, emphasizing the urgency of addressing their unique needs through family-centered systemic support services.

'Talking lines': the stories of diagnosis and support as told by those with lived experience of rare forms of dementia.

BACKGROUND: People living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness. METHODS: Semi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis. RESULTS: Analysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care. CONCLUSIONS: The use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants' service provision which were working, the narratives pointed to future directions services might move in.

Rehabilitation Services for Young-Onset Dementia: Examples from High- and Low-Middle-Income Countries.

The WHO Dementia Global Action Plan states that rehabilitation services for dementia are required to promote health, reduce disability, and maintain quality of life for those living with dementia. Current services, however, are scarce, particularly for people with young-onset dementia (YOD). This article, written by an international group of multidisciplinary dementia specialists, offers a three-part overview to promote the development of rehabilitation services for YOD. Firstly, we provide a synthesis of knowledge on current evidence-based rehabilitative therapies for early-onset Alzheimer's disease (EOAD), behavioural variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), and posterior cortical atrophy (PCA). Secondly, we discuss the characteristics of rehabilitation services for YOD, providing examples across three continents for how these services can be embedded in existing settings and the different roles of the rehabilitation multidisciplinary team. Lastly, we conclude by highlighting the potential of telehealth in making rehabilitation services more accessible for people with YOD. Overall, with this paper, we aim to encourage clinical leads to begin introducing at least some rehabilitation into their services, leveraging existing resources and finding support in the collective expertise of the broader multidisciplinary dementia professional community.

Association between depression and young-onset dementia in middle-aged women.

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.

Characteristics of domestic violence perpetrators with dementia from police records using text mining.

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.

Post-diagnostic support for persons with young-onset dementia - a retrospective analysis based on data from the Swedish dementia registry SveDem.

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 young-onset dementia.

Factors associated with the quality of life of persons with young-onset dementia: A systematic literature review.

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.