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Group cognitive stimulation therapy (CST) has been shown to improve cognition and quality of life of people with dementia in multiple trials, but there has been scant research involving people with intellectual disability and dementia. This study aimed to assess the feasibility of conducting a randomised controlled trial of group CST for this population.
Aims
To assess the feasibility of participant recruitment and retention, the appropriateness of outcome measures, and the feasibility of group CST (adherence, fidelity, acceptability), as well as the feasibility of collecting data for an economic evaluation.
Method
Participants were recruited from six National Health Service trusts in England and randomised to group CST plus treatment as usual (TAU) or TAU only. Cognition, quality of life, depression, and use of health and social care services were measured at baseline and at 8–9 weeks. Qualitative interviews with participants, carers and facilitators were used to explore facilitators of and barriers to delivery of CST. Trial registration number: ISRCTN88614460.
Results
We obtained consent from 46 participants, and 34 (73.9%) were randomised: 18 to CST and 16 to TAU. All randomised participants completed follow-up. Completion rates of outcome measures (including health economic measures) were adequate; 75.7% of sessions were delivered, and 56% of participants attended ten or more. Fidelity of delivery was of moderate quality. CST was acceptable to all stakeholders; barriers included travel distance, carer availability and sessions needing further adaptations. The estimated cost per participant of delivering CST was £602.
Conclusions
There were multiple challenges including recruitment issues, a large dropout rate before randomisation and practical issues affecting attendance. These issues would need to be addressed before conducting a larger trial.
The Connecting People and Community for Living Well initiative recognizes that communities, specifically multisector community teams, are a critical part of the provision of programs and supports for those affected by dementia. Effective collaboration and building and supporting the collective well-being of these multisector community teams is key to their success and sustainability. This research sought to understand what supports the well-being of community teams. Focus groups were conducted with multisector community teams who support those impacted by dementia from across four rural communities. The research team used thematic analysis to identify patterns emerging within and across focus groups. The findings highlighted three areas of importance: the need for a resource to support teams to measure, monitor, and describe the impact of their actions; ongoing support from a system-level team; and the development of local and/or provincial policy and infrastructure that supports sustaining collaborative community-based work.
Ageing-in-place for persons with dementia and informal care-givers is encouraged by governments and society. However, individuals with non-Western migration backgrounds are at higher risk of dementia yet underrepresented in research and care. This study aims to identify ageing-in-place care preferences of persons with dementia and their informal care-givers in the Netherlands. Semi-structured interviews (n = 8 participants with dementia, n = 20 informal care-givers) were analyzed using reflexive thematic analysis. Findings reveal that informal care-givers feel a strong duty to care, assisting with various daily tasks. While they desire shared care with professionals, identifying concrete care needs is challenging, highlighting the need for proactive professional support. Participants also emphasized the importance of culturally sensitive in-home care, home adaptations, social care and accessible dementia information. Additionally, the emotional impact of dementia on care recipients and care-givers underscores the need for emotional support. These insights enhance understanding of the care preferences of persons with dementia and their informal care-givers, aiding more efficient and culturally responsive health service planning.
Respite for individuals caring for family living with dementia is a common way to take personal time away from caregiving. Other than respite, there is little indication that caregivers receive adequate support from community and healthcare services. As a result, caregivers tend to experience a decline in well-being, due, in part, to a reduction in meaningful leisure experiences. The purpose of this article is to share findings from research aimed at discovering ways to enhance caregiver participation in meaningful leisure. Findings highlight how participants sacrificed their leisure time in favour of caregiving responsibilities and experienced a diminished sense of social connection. Findings also highlight how participants can have their own care needs met through leisure programming that lets them know they matter. We draw from these findings to suggest ways to direct more attention and resources to meeting caregiver needs.
Dementia has certain features relevant to values-based medicine. It is a progressive condition, so that a person’s choices and preferences may change over time, and they may require increasing input from others over time. Furthermore, our perceptions of diseases like Alzheimer’s, which cause dementia, are changing over time, along with the philosophy of care. Although memory impairment is the commonest presenting feature of dementia, it is by no means the only issue that arises during the course of the condition. This chapter examines four broad themes in the dementia pathway: early dementia; changes in behaviour; legal and ethical issues; and advanced dementia and care. Vignettes are used to discuss some of the typical issues that arise in clinical situations and how these can be addressed through the application of both evidence- and values-based practice.
Psychosocial wellbeing is increasingly recognised as a key outcome in dementia research and care, reflecting a shift towards person-centred care and patient-reported outcome measures. However, progress is hindered by a lack of a clear and consistent definition. The present systematic review aimed to establish how previous dementia research has defined the term and how existing definitions may be unified.
Methods:
A systematic literature review was conducted in PubMed, Embase, and Web of Science using only the term ‘psychosocial’ as well as terms related to dementia in the search string. Two blinded reviewers independently conducted the abstracts screening, full-text screening. Definitions used in included records were extracted and their content grouped into categories and domains. For papers presenting empirical findings, quality screening was performed using Critical Appraisal Skills Programme (CASP) checklists and findings were narratively summarised.
Results:
A total of n=36 records were identified that provided a definition for psychosocial wellbeing. Conceptualizations most commonly (86 %) included emotional wellbeing, social health (64%), behavioural symptoms (44%), and subjective lived wellbeing (42%). A total of n=23 records also contained empirical data, which indicated that psychosocial wellbeing may be improved by several interventions such as tailored activities and validation group therapies, among others.
Discussion:
The construct of ‘psychosocial wellbeing’ as currently used in dementia research predominantly incorporates emotional and subjective lived wellbeing, social health, and behavioural symptoms. This indicates an emerging consensus. To progress dementia research and care practice, it is essential that future studies use a common operationalization.
Colonization and ongoing colonial policies and practices are contributing to increased dementia rates in Indigenous populations. This health inequity could be addressed by implementing culturally safe dementia interventions specifically designed for Indigenous people. We conducted a scoping review of culturally safe dementia care interventions for Indigenous populations. Databases searched included OVID (Medline, PsycINFO, Embase, Healthstar), Informit Indigenous Collection, JBI EBP, Scopus/Elsevier and PubMed. Eligibility criteria included studies in English, interventions designed specifically for Indigenous persons living with dementia and evaluative outcomes of the intervention. In total, 2,259 articles were identified. After removing duplicates, 1,394 titles and abstracts were screened and 54 studies were screened for eligibility. Of these, no studies were eligible for inclusion. This empty review reveals a massive and inexcusable gap in knowledge around developing, implementing and evaluating culturally safe Indigenous-specific dementia care interventions. Future directions for research include working with Indigenous peoples to determine what culturally safe interventions for dementia look like, implementing high-quality studies with evidence-based measures and outcomes, and improving efforts to get this important work published to inform future studies.
Dementia affects millions globally, with a subset of cases potentially reversible. This study evaluates the incidence, clinical markers and treatment outcomes of reversible dementias (ReDem).
Method:
This retrospective study included 370 ReDem cases from 1810 dementia patients. The ReDem cohort was split into potentially reversible dementias (PRD) and dual etiology (DE) groups. PRD encompassed secondary, potentially treatable dementia conditions, while DE included primary degenerative dementia (DD) with ≥1 uncontrolled comorbidity or new disease that worsened symptoms.
Results:
ReDem cases comprised 20.4% (n = 370 out of 1810) of dementia patients, with ReDem patients being younger (mean 56.2 vs. 61.9 years, p < 0.001) and exhibiting shorter illness durations than DD patients (p < 0.001). Key red flags, including young age (<45 years) at onset (DD = 8.6% vs. ReDem = 18.1%), fluctuation in symptoms (DD = 3.4% vs. ReDem = 11.6%), rapid cognitive decline (DD = 6.9% vs. ReDem = 18.4), high-risk exposures (DD = 0.1% vs. ReDem = 0.8%), high-risk behavior (DD = 0.1% vs. ReDem = 2.4%) and incongruent neuropsychological findings(DD = 1.0% vs. 12.7%), were significantly more frequent in ReDem cases (p < 0.05). Odds increased with each red flag present (≥1: OR = 5.94; ≥2: OR = 20.69; ≥3: OR = 25.14, p < 0.05). Reversible etiologies included immune (20.0%), neuroinfectious (6.6%), psychiatric (7.6%), nutritional/metabolic (10.5%), neurosurgical (14.6%) and other causes (12.2%). Of the 41% (152/370) followed, 19 expired, 63.9% (85/133) reported subjective improvement, and 31.6% (42/133) showed clinical dementia rating improvement.
Discussion and Conclusion:
This large-scale study underscores the importance of comprehensive diagnostic evaluations for ReDem. Identifying and treating reversible conditions and comorbidities in DD can improve patient outcomes, emphasizing the need for thorough evaluations in memory clinics and targeted interventions in dementia care.
This chapter explores the impact of Alzheimer’s disease on memory and cognitive function, highlighting the potential of music as a therapeutic intervention. It discusses early warning signs of dementia and emphasizes the importance of lifestyle changes, including music engagement, to potentially slow down cognitive decline. The chapter reveals the remarkable resilience of musical memory in Alzheimer’s patients, even those with severe memory deficits. It delves into the concept of a unique ’musical memory’ that remains intact longer than other forms of memory. Studies show that Alzheimer’s patients can recall familiar melodies, detect irregularities in music, and even learn new songs, demonstrating the power of music to unlock memories and emotions. The chapter also discusses the ’emotion-memory tunnel’, a brain region crucial for musical memory, emotions, predictions, and synchronization. Music’s ability to activate this tunnel may explain its efficacy in stimulating memory recall in dementia patients. The chapter then highlights ongoing research investigating the potential of singing to mitigate brain degeneration in Alzheimer’s patients. Early findings suggest that musical engagement may slow down brain ageing and improve cognitive function, mood, and quality of life.
Although dementia is a terminal condition, palliation can be a challenge for clinical services. As dementia progresses, people frequently develop behavioural and psychological symptoms, sometimes so severe they require care in specialist dementia mental health wards. Although these are often a marker of late disease, there has been little research on the mortality of people admitted to these wards.
Aims
We sought to describe the mortality of this group, both on-ward and after discharge, and to investigate clinical features predicting 1-year mortality.
Method
First, we conducted a retrospective analysis of 576 people with dementia admitted to the Cambridgeshire and Peterborough National Health Service (NHS) Foundation Trust dementia wards over an 8-year period. We attempted to identify predictors of mortality and build predictive machine learning models. To investigate deaths occurring during admission, we conducted a second analysis as a retrospective service evaluation involving mental health wards for people with dementia at four NHS trusts, including 1976 admissions over 7 years.
Results
Survival following admission showed high variability, with a median of 1201 days (3.3 years). We were not able to accurately predict those at high risk of death from clinical data. We found that on-ward mortality remains rare but had increased from 3 deaths per year in 2013 to 13 in 2019.
Conclusions
We suggest that arrangements to ensure effective palliation are available on all such wards. It is not clear where discussions around end-of-life care are best placed in the dementia pathway, but we suggest it should be considered at admission.
Assessment of regional glucose metabolism by [18F]fluorodeoxyglucose position emission tomography ([18F]FDG PET) serves as a biomarker for differential diagnosis of dementia. Conversely, depressive cognitive impairment shows no abnormalities on cerebral [18F]FDG PET.
Aims
This study validates the diagnostic value of [18F]FDG PET in addition to clinical diagnosis in a real-life gerontopsychiatric clinical population.
Method
Ninety-eight consecutive patients with depression and cognitive impairment were included. Baseline clinical diagnoses were independently established before and after disclosure of [18F]FDG PET, and dichotomised into neurodegenerative or non-neurodegenerative diseases (level 1). Subsequently, neurodegenerative cases were allocated to diagnostic subgroups (Alzheimer’s disease, Lewy body diseases, frontotemporal lobar degeneration, neurodegenerative other; level 2). An interdisciplinary, biomarker-supported consensus diagnosis after a median follow-up of 6.6 month after [18F]FDG PET served as reference. Changes of clinical diagnoses and diagnostic accuracy were assessed.
Results
After disclosure of [18F]FDG PET, level-1 clinical diagnoses changed in 23% (95% CI 16–33%) of cases, improving the diagnostic accuracy from 72% (95% CI 62–81%) to 92% (95% CI 84–96%) (P < 0.001). [18F]FDG PET was of particular value for exclusion of neurodegenerative disease. Concerning level-2 decisions, the clinical diagnoses changed in 30% (95% CI 21–40%) of cases, increasing its accuracy from 64% (95% CI 54–74%) to 85% (95% CI 76–91%) (P < 0.001). A major fraction of incorrect level-2 diagnoses comprised Alzheimer’s disease misdiagnosed as Lewy body diseases.
Conclusions
[18F]FDG PET provides a significant incremental diagnostic value beyond the clinical diagnosis in depressive cognitive impairment. Thus, [18F]FDG PET should be considered in the diagnostic work-up of patients with mental disorders and cognitive impairment.
Research on grief among family caregivers of individuals with dementia has seen a notable increase. Our objective was to synthesize the relationship between coping factors and pre-death grief (PDG).
Design
(Prospero protocol: CRD42024560208) We conducted a systematic review of literature from PubMed, Web of Science, Scopus, PsycInfo, and Medline up to July 2024. Included studies encompassed quantitative, qualitative, and mixed methods approaches. During the study selection process, we excluded data on intervention effectiveness and studies not published in English. The quality of the studies was evaluated using the Mixed Methods Appraisal Tool. Evidence was summarized narratively.
Participants
Participants in this study are family caregivers who take care of dementia patients.
Methods
We included data from 12 studies in our analysis. The majority of these investigations were carried out in Western countries. The research primarily involved spousal or adult child caregivers and centered on PDG. We included validated measures of PDG in each study.
Significance of results
Among the reviewed studies, five reported on coping strategies, while seven addressed coping resources. Overall, the findings indicated that the application of coping strategies, specifically positive coping strategies, is effective in alleviating PDG and mitigating the effects of caregiving burden on PDG. Coping resources – including self-efficacy, sense of coherence, and support from friends and family – appear to have a beneficial impact in reducing PDG. Additionally, the quality of relationships with friends and family members was found to be a significant factor. Moreover, spiritual and religious beliefs, along with community faith, have been identified as crucial elements in alleviating grief experienced by caregivers.
Conclusion
Knowing what coping strategies and resources are beneficial to decrease PDG experiences among dementia caregivers.
The study examines the behavioural and psychological symptoms (BPSs) associated with dementia and mild cognitive impairment (MCI), highlighting the prevalence and impact of these symptoms on individuals with varying levels of cognitive function, particularly in the context of the increasing incidence of dementia among the ageing population.
Aims
To explore the BPSs among out-patients with different cognitive statuses.
Method
This cross-sectional study enrolled out-patients who attended the cognitive assessment out-patient clinic at our hospital between January 2018 and October 2022. The patients’ cognitive status was evaluated using the Neuropsychiatric Inventory (NPI), Activities of Daily Living and the Montreal Cognitive Assessment-Basic scales.
Results
The study enrolled 3273 out-patients, including 688 (21%) with cognitively unimpairment, 1831 (56%) with MCI and 754 (23%) with dementia. The NPI score, the percentage of patients with BPSs and the number of BPSs increased with decreasing cognition level. Unordered logistic regression analysis showed that after adjustment of confounding variables, delusions, depression, euphoria and psychomotor alterations were independently associated with MCI. Delusions, agitation, euphoria, apathy, psychomotor alterations and sleep change were independently associated with dementia.
Conclusions
NPI scores, the percentage of patients with BPSs and the numbers of BPSs increased with declining cognitive function.
People with dementia (PwD) and their carers often consider maintaining good quality of life (QoL) more important than improvements in cognition or other symptoms of dementia. There is a clinical need for identifying interventions that can improve QoL of PwD. There are currently no evidence-based guidelines to help clinicians, patients and policy makers to make informed decisions regarding QoL in dementia.
Aims
To conduct the first comprehensive systematic review of all studies that investigated efficacy of any pharmacological or non-pharmacological intervention for improving QoL of PwD.
Method
Our review team identified eligible studies by comprehensively searching nine databases. We completed quality assessment, extracted relevant data and performed GRADE assessment of eligible studies. We conducted meta-analyses when three or more studies investigated an intervention for improving QoL of PwD.
Results
We screened 14 389 abstracts and included 324 eligible studies. Our meta-analysis confirmed level 1 evidence supporting the use of group cognitive stimulation therapy for improving QoL (standardised mean difference 0.25; P = 0.003) of PwD. Our narrative data synthesis revealed level 2 evidence supporting 42 non-pharmacological interventions, including those based on cognitive rehabilitation, reminiscence, occupational therapy, robots, exercise or music therapy. Current evidence supporting the use of any pharmacological intervention for improving QoL in dementia is limited.
Conclusions
Current evidence highlights the importance of non-pharmacological interventions and multidisciplinary care for supporting QoL of PwD. QoL should be prioritised when agreeing care plans. Further research focusing on QoL outcomes and investigating combined pharmacological and non-pharmacological interventions is urgently needed.
Late-life affective disorders (LLADs) are common and are projected to increase by 2050. There have been several studies linking late-life depression to an increased risk of dementia, but it is unclear if bipolar affective disorder or anxiety disorders pose a similar risk.
Aims
We aimed to compare the risk of LLADs progressing to all-cause dementia, and the demographic and clinical variables mediating the risk.
Methods
We used the South London and Maudsley National Health Service Foundation Trust Clinical Records Interactive Search system to identify patients aged 60 years or older with a diagnosis of any affective disorder. Cox proportional hazard models were used to determine differences in dementia risk between late-life anxiety disorders versus late-life depression, and late-life bipolar disorder versus late-life depression. Demographic and clinical characteristics associated with the risk of dementia were investigated.
Results
Some 5695 patients were identified and included in the final analysis. Of these, 388 had a diagnosis of bipolar affective disorder, 1365 had a diagnosis of an anxiety disorder and 3942 had a diagnosis of a depressive disorder. Bipolar affective disorder was associated with a lower hazard of developing dementia compared to depression (adjusted model including demographics and baseline cognition, hazard ratio: 0.60; 95% CI: 0.41–0.87). Anxiety disorders had a similar hazard of developing dementia (adjusted hazard ratio: 1.05; 95% CI: 0.90–1.22). A prior history of a depressive disorder reduced the risk of late-life depression progressing to dementia – suggesting the new onset of a depressive disorder in later life is associated with higher risk – but a prior history of anxiety disorders or bipolar affective disorder did not alter risk.
Conclusions
LLADs have a differential risk of developing all-cause dementia, with demographic- and illness-related factors influencing the risk. Further prospective cohort studies are needed to explore the link between LLADs and dementia development, and mediators of the lower risk of dementia associated with late-life bipolar disorder compared to late-life depression.
Dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD) are collectively called as Lewy body dementia (LBD). Despite the urgent clinical need, there is no reliable protein biomarker for LBD. Hence, we conducted the first comprehensive systematic review of all Differentially Abundant Proteins (DAP) in all tissues from people with LBD for advancing our understanding of LBD molecular pathology that is essential for facilitating discovery of novel diagnostic biomarkers and therapeutic targets for LBD.
Methods:
We identified eligible studies by comprehensively searching five databases and grey literature (PROSPERO protocol:CRD42020218889). We completed quality assessment and extracted relevant data. We completed narrative synthesis and appropriate meta-analyses. We analysed functional implications of all reported DAP using DAVID tools.
Results:
We screened 11,006 articles and identified 193 eligible studies. 305 DAP were reported and 16 were replicated in DLB. 37 DAP were reported and three were replicated in PDD. Our meta-analyses confirmed six DAP (TAU, SYUA, NFL, CHI3L1, GFAP, CLAT) in DLB, and three DAP (TAU, SYUA, NFL) in PDD. There was no replicated blood-based DAP in DLB or PDD. The reported DAP may contribute to LBD pathology by impacting misfolded protein clearance, dopamine neurotransmission, apoptosis, neuroinflammation, synaptic plasticity and extracellular vesicles.
Conclusion:
Our meta-analyses confirmed significantly lower CSF TAU levels in DLB and CSF SYUA levels in PDD, when compared to Alzheimer’s disease. Our findings indicate promising diagnostic biomarkers for LBD and may help prioritising molecular pathways for therapeutic target discovery. We highlight ten future research priorities based on our findings.
The aim of this study was to assess the association between fish intake, n-3 PUFA, n-6 PUFA and risk of disabling dementia.
Design:
Prospective cohort.
Setting:
Municipalities within the Japan Public Health Centre-based Prospective Study.
Participants:
43 651 participants: (20 002 men and 23 649 women).
Results:
Exposure intake of fish, n-3 and n-6 PUFA was evaluated in 1995–1997. We defined disabling dementia cases as participants who were certified to receive disability care under the long-term-care insurance programme (2006–2016) in participating municipalities with a grade of activities of daily living related to dementia ≥ IIa on the dementia rating scale (range 0–IV and M). Cox proportional hazard models were applied to obtain hazard ratios (HR) and 95 % CI according to quartiles of exposures of interest. In the main analysis, we adjusted for age and area, smoking, BMI, alcohol and metabolic equivalent tasks. During 410 350 person-years of follow-up with an average follow-up of 9·4 years, 5278 cases of disabling dementia were diagnosed. Fish intake and most PUFA were not associated with the risk of disabling dementia in men. In women, n-6 PUFA showed a significant decreasing trend in risk the highest HR (95 % CI) compared with the lowest was 0·90 (0·81, 0·99) (P for trend = 0·024) and alpha-linolenic acid (ALA) was 0·91 (0·82, 1·00) (P for trend = 0·043).
Conclusions:
Our findings suggest no association with fish in general and only n-6 PUFA and ALA may be associated with a decreased risk of disabling dementia especially in women.
Longitudinal studies can provide insights into how family members negotiate the caring role and carer identity over time. The analyses of the longitudinal, qualitative interviews on ‘living well’ with dementia from the IDEAL cohort study aimed to identify the shifting, embedded narratives of family members of people with dementia as they negotiated the caring role and carer identity over time. Twenty semi-structured, qualitative interviews were conducted with family members of people with dementia and 14 were repeated one year later; these interviews were analysed using cross-sectional and longitudinal thematic and structural narrative analyses. Longitudinal, interrelated themes, including the care needs and decline of the person with dementia, relationship change and variable service support, framed the narrative types of family members. Six shifting narratives, apparent as dominant and secondary narrative types, characterized negotiating the caring role over time: absent/normalizing, active role adoption / carer identity, resistance, acceptance and resignation, hypervigilance/submergence and role entrapment, and foreshadowed future. The presence or absence of a carer identity was also evident from interviewees’ accounts, although, even where family members were overburdened by the caring role, they did not necessarily express a carer identity. Rather than considering transition into a carer identity, hearing different narratives within the caring role is important to understand how family members experience caring, whether they see themselves as ‘carers’, and when and how they need support. Timely and continued post-diagnostic support, where different caring narratives are recognized, is needed, as well as international initiatives for carer identification.