We aimed to understand the facilitators to developing and sustaining high-quality services for people with young onset dementia (YOD) and their families/supporters.

This qualitative study used semi-structured interviews with commissioners and service managers, analyzed using inductive thematic analysis.

A purposive sample of providers was selected from diverse areas and contrasting YOD services.

Eighteen senior staff from YOD services and two dementia service commissioners took part.

For commissioners, key interview topics were experiences of commissioning YOD services, perceived facilitators or barriers, and how future guidance should be structured for ease of use. For service providers, key topics explored experiences of delivering YOD services; what was achievable or challenging; how the service was funded; how it linked with broader provision for YOD in the area; and how guidance should be structured.

Recorded interviews lasted 30–40 minutes. Seven key facilitators to the development and sustaining of YOD services were identified: having knowledgeable, committed local champions; involvement of people living with YOD and family supporters; initial delivery within existing resources; partnership working within and between sectors; having a reflective, supportive organizational culture; gathering evidence of impact; and having wider support and guidance.

Improvements in provision for those with YOD and their families need to be built on understanding of service-level and interpersonal influences as well as on understanding of YOD itself. Our findings highlight a set of facilitators which need to be in place to establish and sustain high-quality YOD services that fit the local context.

Not only care professionals are responsible for the quality of care but other stakeholders including regulators also play a role. Over the last decades, countries have increasingly invested in regulation of Long-Term Care (LTC) for older persons, raising the question of how regulation should be put into practice to guarantee or improve the quality of care. This scoping review aims to summarize the evidence on regulatory practices in LTC for older persons. It identifies empirical studies, documents the aims and findings, and describes research gaps to foster this field.

A literature search (in PubMed, Embase, Cinahl, APA PsycInfo and Scopus) was performed from inception up to December 12th, 2022. Thirty-one studies were included.

All included studies were from high-income countries, in particular Australia, the US and Northwestern Europe, and almost all focused on care provided in LTC facilities. The studies focused on different aspects of regulatory practice, including care users’ experiences in collecting intelligence, impact of standards, regulatory systems and strategies, inspection activities and policies, perception and style of inspectors, perception and attitudes of inspectees and validity and reliability of inspection outcomes.

With increasingly fragmented and networked care providers, and an increasing call for person-centred care, more flexible forms of regulatory practice in LTC are needed, organized closer to daily practice, bottom-up. We hope that this scoping review will raise awareness of the importance of regulatory practice and foster research in this field, to improve the quality of LTC for older persons, and optimize their functional ability and well-being.

To examine predictors of suicidal behavior (SB) in adults aged 75 years and above with dementia.

Longitudinal national register-based study.

Swedish residents aged ≥75 years with dementia identified in the Swedish Dementia Registry (SveDem) between 1 January 2007 and 31 December 2017 (N = 59 042) and followed until 31 December 2018. Data were linked with numerous national registers using personal identity numbers.

Outcomes were nonfatal self-harm and suicide. Fine and Gray regression models were used to investigate demographics, comorbidities, and psychoactive medications associated with fatal and nonfatal SB.

Suicidal behavior was observed in 160 persons after dementia diagnosis; 29 of these died by suicide. Adjusted sub-hazard ratio (aSHRs) for SB was increased in those who had a previous episode of self-harm (aSHR = 14.42; 95% confidence interval [CI] = 7.06–29.46), those with serious depression (aSHR = 4.33, 95%CI = 2.94–6.4), and in those born outside Sweden (aSHR = 1.53; 95% CI = 1.03–2.27). Use of hypnotics or anxiolytics was also associated with a higher risk of SB; use of antidepressants was not. Milder dementia and higher frailty score also increased risk of SB. Risk was decreased in those who received home care (aSHR = 0.52; 95%CI = 0.38–0.71) and in the oldest group (aSHR = 0.35; 95%CI = 0.25–0.49).

In addition to established targets for suicidal behavior prevention (improved identification and treatment of depression and previous self-harm), several new risk factors were suggested. There is a need for innovative public health strategies to meet the needs of older dementia patients with a foreign background. Home care may have a potential positive effect to prevent SB in people with dementia, but this needs to be further explored.

To examine the relationship between childhood traumatic experiences and early and late-onset suicidal behavior among depressed older adults.

Cross-sectional study.

Inpatient and outpatient psychiatric services in Pennsylvania.

Our sample included 224 adults aged 50+ (M ± SD = 62.5 ± 7.4) recruited into three depressed groups: (1) 84 suicide attempters, (2) 44 suicide ideators, and (3) 58 non-suicidal comparisons, and a non-psychiatric healthy comparison group (N = 38).

The Childhood Trauma Questionnaire measured experiences of childhood trauma such as emotional abuse, physical abuse, emotional neglect, physical neglect, and sexual abuse.

Attempters were separated into early- and late-onset based on age of first attempt using a statistical algorithm that identified a cutoff age of 30 years old. Overall, we found group differences in emotional and physical abuse and neglect in both genders and sexual abuse in females, but not in males. Early-onset attempters experienced more childhood emotional abuse and neglect than late-onset attempters and were more likely to have experienced multiple forms of abuse. They also experienced more emotional abuse and neglect than all comparison groups. Consistently, early-onset attempters more often met criteria for current or lifetime PTSD relative to late-onset attempters and most comparison groups. Late-onset attempters had similar levels of childhood trauma as other depressed groups.

Our study reaffirms that there are distinct pathways to suicidal behavior in older adults based on their age of first suicide attempt and that trauma experienced in childhood has long-lasting emotional and behavioral consequences, even into late life.

This study examines whether transition to caregiving within or outside the household is associated with changes in suicidal ideation and whether this depends on the type of caregiver relationship, the age or gender of the caregiver, or the welfare system.

Longitudinal study.

Ten European countries.

Data from the Survey of Health, Ageing, and Retirement in Europe were used (waves 1, 2, 4, 5, and 6) including participants aged ≥40 years (pooled Observations = 171,848).

Suicidal ideation was measured using the Euro-D scale. Caregiving was measured as care inside and outside the household, and for different recipients. Fixed effects logistic regression analyses, adjusted for health and sociodemographic factors, were used.

Transitioning into caregiving inside the household was associated with higher odds of suicidal ideation, in particular if they transitioned into care for partners or parents and within Southern and Bismarckian welfare systems. Transitioning into caregiving outside the household was not associated with suicidal ideation, except among those transitioning into caregiving for non-relatives (higher odds of suicidal ideation), and among male and older caregivers (lower odds of suicidal ideation). Suicide ideation was higher among caregivers in Southern compared to Bismarckian or Scandinavian welfare systems.

Informal caregiving is associated with suicidal ideation among caregivers inside but not among all caregivers outside the household. The caregiver’s characteristics, the care relationship, and the welfare system play an important role. Preventing suicidal ideation requires interventions that focus on informal caregivers and consider their individual and contextual factors.

The present study examines how different lifelong employment patterns are related to social relationships in old age, and whether there are gender differences in the impact of lifelong employment patterns.

The study was based on data collected among European adults as part of the Health, Aging and Retirement Survey in Europe (SHARE) and focuses on retired adults.

The study combines data on social relationships, collected in 2015, with retrospective data on employment history (number of jobs and years of employment) collected in 2017.

The findings show that adults who worked in more jobs had overall better structural characteristics of their later life networks – they had larger social networks and were more likely to include children and friends within those networks but less likely to include their spouse. On the other hand, working in more jobs was related to less emotional closeness with the network. These results varied between men and women; women who were involved in the labor market over their life had larger social networks and tended to include friends as confidants. Among men, working for more years was related to higher emotional closeness with the social network.

The study may indicate a gendered pattern of social advantages and disadvantages to involvement in the labor market over the work course. Practitioners should consider the lifelong employment of adults to identify those who might be at risk of social isolation.

A number of studies have compared Alzheimer’s disease (AD), the commonest form of dementia, based on their age of onset, i.e. before the age of 65 years (early-onset AD, EO-AD) to those developing after 65 years of age (late-onset AD, LO-AD), but the differences are not clear. We performed a systematic review and meta-analysis to compare clinical characteristics between EO-AD and LO-AD.

Medline, Embase, PsycINFO, and CINAHL databases were systematically searched for studies comparing time to diagnosis, cognitive scores, annual cognitive decline, activities of daily living (ADLs), neuropsychiatric symptoms (NPS), quality of life (QoL), and survival time for EO-AD and LO-AD patients.

Forty-two studies were included (EO-AD participants n = 5,544; LO-AD participants n = 16,042). An inverse variance method with random effects models was used to calculate overall effect estimates for each outcome. People with EO-AD had significantly poorer baseline cognitive performance and faster cognitive decline but longer survival times than people with LO-AD. There was no evidence that EO-AD patients differ from people with LO-AD in terms of symptom onset to diagnosis time, ADLs, and NPS. There were insufficient data to estimate overall effects of differences in QoL in EO-AD compared to LO-AD.

Our findings suggest that EO-AD differs from LO-AD in baseline cognition, cognitive decline, and survival time but otherwise has similar clinical characteristics to LO-AD. Larger studies using standardized questionnaires focusing on the clinical presentations are needed to better understand the impact of age of onset in AD.

Geriatric depression (GD) is associated with significant medical comorbidity, cognitive impairment, brain atrophy, premature mortality, and suboptimal treatment response. While apathy and anxiety are common comorbidities, resilience is a protective factor. Understanding the relationships between brain morphometry, depression, and resilience in GD could inform clinical treatment. Only few studies have addressed gray matter volume (GMV) associations with mood and resilience.

Forty-nine adults aged >60 years (38 women) with major depressive disorder undergoing concurrent antidepressant treatment participated in the study.

Anatomical T1-weighted scans, apathy, anxiety, and resilience data were collected. Freesurfer 6.0 was used to preprocess T1-weighted images and qdec to perform voxel-wise whole-brain analyses. Partial Spearman correlations controlling for age and sex tested the associations between clinical scores, and general linear models identified clusters of associations between GMV and clinical scores, with age and sex as covariates. Cluster correction and Monte-Carlo simulations were applied (corrected alpha = 0.05).

Greater depression severity was associated with greater anxiety (r = 0.53, p = 0.0001), lower resilience (r = −0.33, p = 0.03), and greater apathy (r = 0.39, p = 0.01). Greater GMV in widespread, partially overlapping clusters across the brain was associated with reduced anxiety and apathy, as well as increased resilience.

Our results suggest that greater GMV in extended brain regions is a potential marker for resilience in GD, while GMV in more focal and overlapping regions may be markers for depression and anxiety. Interventions focused on improving symptoms in GD may seek to examine their effects on these brain regions.

This paper used data from the Apathy in Dementia Methylphenidate Trial 2 (NCT02346201) to conduct a planned cost consequence analysis to investigate whether treatment of apathy with methylphenidate is economically attractive.

A total of 167 patients with clinically significant apathy randomized to either methylphenidate or placebo were included. The Resource Utilization in Dementia Lite instrument assessed resource utilization for the past 30 days and the EuroQol five dimension five level questionnaire assessed health utility at baseline, 3 months, and 6 months. Resources were converted to costs using standard sources and reported in 2021 USD. A repeated measures analysis of variance compared change in costs and utility over time between the treatment and placebo groups. A binary logistic regression was used to assess cost predictors.

Costs were not significantly different between groups whether the cost of methylphenidate was excluded (F(2,330) = 0.626, ηp 2 = 0.004, p = 0.535) or included (F(2,330) = 0.629, ηp 2 = 0.004, p = 0.534). Utility improved with methylphenidate treatment as there was a group by time interaction (F(2,330) = 7.525, ηp 2 = 0.044, p < 0.001).

Results from this study indicated that there was no evidence for a difference in resource utilization costs between methylphenidate and placebo treatment. However, utility improved significantly over the 6-month follow-up period. These results can aid in decision-making to improve quality of life in patients with Alzheimer’s disease while considering the burden on the healthcare system.

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.

Retrospective file review from 1992 to 2014.

The inpatient unit of a tertiary neuropsychiatry service in Victoria, Australia.

Inpatients with a diagnosis of VD.

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.

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).

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.

Previous studies have shown that socioeconomically deprived groups exhibit higher lesion load of the white matter (WM) in aging. The aim of this study was to (i) investigate to what extent education and income may contribute to differences in white matter hyperintensities (WMHs) and (ii) identify risk profiles related to a higher prevalence of age-associated WMH.

Population-based adult study of the Leipzig Research Centre for Civilization Diseases (LIFE) in Leipzig, Germany.

Dementia-free sample aged 40–80 years (n = 1,185) derived from the population registry.

Information was obtained in standardized interviews. WMH (including the derived Fazekas scores) were assessed using automated segmentation of high-resolution T1-weighted anatomical and fluid-attenuated inversion recovery (FLAIR) MRI acquired at 3T.

Despite a significant association between income and WMH in univariate analyses, results from adjusted models (age, gender, arterial hypertension, heart disease, and APOE e4 allele) indicated no association between income and WMH. Education was associated with Fazekas scores, but not with WMH and not after Bonferroni correction. Prevalence of some health-related risk factors was significantly higher among low-income/education groups. After combining risk factors in a factor analysis, results from adjusted models indicated significant associations between higher distress and more WMH as well as between obesity and more deep WMH.

Previously observed differences in WMH between socioeconomically deprived groups might stem from differences in health-related risk factors. These risk factors should be targeted in prevention programs tailored to socioeconomically deprived individuals.

To identify the patterns of errors in facial emotion recognition in frontotemporal dementia (FTD) subtypes compared with Alzheimer’s disease (AD) and healthy controls.

Retrospective analysis.

Participants were recruited from FRONTIER, the frontotemporal dementia research group at the University of Sydney, Australia.

A total of 356 participants (behavioral-variant FTD (bvFTD): 62, semantic dementia (SD)-left: 29, SD-right: 14, progressive non-fluent aphasia (PNFA): 21, AD: 76, controls: 90) were included.

Facial emotion recognition was assessed using the Facial Affect Selection Task, a word-face matching task measuring recognition of the six basic emotions (anger, disgust, fear, happiness, sadness, and surprise), as well as neutral emotion, portrayed by black and white faces.

Overall, all clinical groups performed significantly worse than controls with the exception of the PNFA subgroup (p = .051). The SD-right group scored worse than all other clinical groups (all p values < .027) and the bvFTD subgroup performed worse than the PNFA group (p < .001). The most frequent errors were in response to the facial emotions disgust (26.1%) and fear (22.9%). The primary error response to each target emotion was identified; patterns of errors were similar across all clinical groups.

Facial emotion recognition is impaired in FTD and AD compared to healthy controls. Within FTD, bvFTD and SD-right are particularly impaired. Dementia groups cannot be distinguished based on error responses alone. Implications for future clinical diagnosis and research are discussed.

Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program.

Pre–post interventional mixed methods study.

Online videoconference group program for carers across the UK held in 2021.

Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators.

The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions.

We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2.

Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression.

The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.

Loneliness functionally varies and is determined by the degree of interaction with others. We examined weekly fluctuations in reported loneliness as a function of frequency of social interactions in old age. We hypothesized that emotional and social components of loneliness would be related to different types of social relationships.

Participants reported their feeling of loneliness and their social interaction quantity (frequency of meetings) via a weekly based diary, over 6 weeks.

Diary study.

The study included 55 older adults with different dwelling arrangements (M = 73.4, SD = 6.97).

Measures of Loneliness (the De Jong-Gierveld Loneliness Scale), Social Interaction and Contact, and sociodemographic parameters were used.

Social and emotional loneliness fluctuated over the course of the 6-week study. Frequency of meeting friends was related to emotional loneliness and total feelings of loneliness. Frequency of meeting close/trusted figures was related to emotional loneliness which appeared the following week. Other variables were not associated with either changes in loneliness or its dimensions.

Loneliness in old age is changeable. The emotional component of loneliness seems to be dominant in determining overall feelings of loneliness and is more sensitive to externally chosen social interaction.

Exploration of the themes and content of psychotic symptoms in young-onset dementia (YOD) is limited to case analysis. The primary objective of this study was to determine the themes of psychotic symptoms in individuals diagnosed with YOD.

Comprehensive retrospective file review of discharge summaries.

Neuropsychiatry, a specialist mental health service located at the Royal Melbourne Hospital, Australia.

Inpatients at Neuropsychiatry admitted between 2018 and 2020 (inclusive).

Data extracted included descriptions and prevalence of psychotic symptoms as well as general demographic and clinical data. Data analysis was conducted using a thematic approach.

Twenty-three inpatients had a diagnosis of YOD with psychotic symptoms. Themes were identified in the domains of delusions (six themes), auditory hallucinations (five themes), and visual hallucinations (two themes). Strong recurring themes across the modalities of hallucinations and delusions were beliefs and experiences relating to paranoia, suspicion, harm, and abuse. Themes did not clearly intersect across the modalities of hallucinations and delusions. A degree of thematic heterogeneity existed within individuals, and individuals experienced delusions or hallucinations of multiple themes. The themes of the psychotic symptoms did not clearly relate to diagnostic category, nor to time from diagnosis.

This study is the first thematic analysis of psychotic symptoms in YOD and provides further understanding of patient phenomenology and experiences of psychosis in YOD.

The International Psychogeriatric Association (IPA) published a provisional consensus definition of agitation in cognitive disorders in 2015. As proposed by the original work group, we summarize the use and validation of criteria in order to remove “provisional” from the definition.

This report summarizes information from the academic literature, research resources, clinical guidelines, expert surveys, and patient and family advocates on the experience of use of the IPA definition. The information was reviewed by a working group of topic experts to create a finalized definition.

We present a final definition which closely resembles the provisional definition with modifications to address special circumstances. We also summarize the development of tools for diagnosis and assessment of agitation and propose strategies for dissemination and integration into precision diagnosis and agitation interventions.

The IPA definition of agitation captures a common and important entity that is recognized by many stakeholders. Dissemination of the definition will permit broader detection and can advance research and best practices for care of patients with agitation.

The number of older adults suffering from schizophrenia is increasing. Despite this, less than 1% of published studies about schizophrenia focus on those older than 65 years. Research indicates these individuals may age differently from the general population due to lifestyle, medication factors, and effects of the disease itself. We aimed to analyze whether schizophrenia was associated with a younger age at first assessment for social care as a proxy measure for accelerated aging.

We analyzed the effect of schizophrenia diagnosis, demographics, mood, comorbidities, falls, cognition, and substance use on age at first assessment for social care using linear regression.

We used data from 168,780 interRAI Home Care and Long-Term Care Facility (HC; LTCF) assessments completed from July 2013 to June 2020.

When corrected for confounding factors, schizophrenia contributed to age at first assessment being 5.5 years younger (p = 0.0001 Cohen’s D = 1.0) than in people free from schizophrenia. Its effect on age at first assessment was second only to smoking. People suffering from schizophrenia also required a higher level of care (long-term care facility rather than home care). People suffering from schizophrenia had significantly higher rates of diabetes mellitus and chronic obstructive pulmonary disease but otherwise had lower rates of comorbidity than people free from schizophrenia who required care.

Aging with schizophrenia is associated with needing increased social care at a younger age. This has implications for social spending and developing policies to decrease frailty in this population.

To develop an agitation reduction and prevention algorithm is intended to guide implementation of the definition of agitation developed by the International Psychogeriatric Association (IPA)

Review of literature on treatment guidelines and recommended algorithms; algorithm development through reiterative integration of research information and expert opinion

IPA Agitation Workgroup

IPA panel of international experts on agitation

Integration of available information into a comprehensive algorithm

None

The IPA Agitation Work Group recommends the Investigate, Plan, and Act (IPA) approach to agitation reduction and prevention. A thorough investigation of the behavior is followed by planning and acting with an emphasis on shared decision-making; the success of the plan is evaluated and adjusted as needed. The process is repeated until agitation is reduced to an acceptable level and prevention of recurrence is optimized. Psychosocial interventions are part of every plan and are continued throughout the process. Pharmacologic interventions are organized into panels of choices for nocturnal/circadian agitation; mild-moderate agitation or agitation with prominent mood features; moderate-severe agitation; and severe agitation with threatened harm to the patient or others. Therapeutic alternatives are presented for each panel. The occurrence of agitation in a variety of venues—home, nursing home, emergency department, hospice—and adjustments to the therapeutic approach are presented.

The IPA definition of agitation is operationalized into an agitation management algorithm that emphasizes the integration of psychosocial and pharmacologic interventions, reiterative assessment of response to treatment, adjustment of therapeutic approaches to reflect the clinical situation, and shared decision-making.

To characterize the features of aged care users who died by suicide and examine the use of mental health services and psychopharmacotherapy in the year before death.

Population-based, retrospective exploratory study

Individuals who died while accessing or waiting for permanent residential aged care (PRAC) or home care packages in Australia between 2008 and 2017.

Linked datasets describing aged care use, date and cause of death, health care use, medication use, and state-based hospital data collections.

Of 532,507 people who died, 354 (0.07%) died by suicide, including 81 receiving a home care package (0.17% of all home care package deaths), 129 in PRAC (0.03% of all deaths in PRAC), and 144 approved for but awaiting care (0.23% of all deaths while awaiting care). Factors associated with death by suicide compared to death by another cause were male sex, having a mental health condition, not having dementia, less frailty, and a hospitalization for self-injury in the year before death. Among those who were awaiting care, being born outside Australia, living alone, and not having a carer were associated with death by suicide. Those who died by suicide more often accessed Government-subsidized mental health services in the year before their death than those who died by another cause.

Older men, those with diagnosed mental health conditions, those living alone and without an informal carer, and those hospitalized for self-injury are key targets for suicide prevention efforts.

To explore the care and support received and wanted by United Kingdom (UK) South Asian and White British people affected by dementia and whether access to it is equitable.

Semi-structured interviews using a topic guide.

Eight memory clinics across four UK National Health Service Trusts; three in London and one in Leicester.

We purposefully recruited a maximum variation sample of people living with dementia from South Asian or White British backgrounds, their family carers, and memory clinic clinicians. We interviewed 62 participants including 13 people living with dementia, 24 family carers, and 25 clinicians.

We audio-recorded interviews, transcribed them, and analyzed them using reflexive thematic analysis.

People from either background were willing to accept needed care and wanted competence and communication from carers. South Asian people frequently discussed needing care from someone with a shared language, but language differences could also be an issue for White British people. Some clinicians thought South Asian people had a stronger preference to provide care within the family. We found that preferences for who provides care varied across families regardless of ethnicity. Those with more financial resources and English language have more options for care that meets their needs.

People of the same background make differing choices about care. Equitable access to care is impacted by people’s personal resources, and people from South Asian backgrounds may experience the double disadvantage of having fewer options for care that meets their needs and fewer resources to seek care elsewhere.