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Delirium is an acute disturbance in mental status characterized by fluctuations in cognition and attention that affects more than 2.6 million hospitalized older adults in the United States annually, a rate that is expected to increase with the aging population. Delirium is associated with a myriad of poor outcomes, including prolonged hospital stay and readmission, loss of independence, new or accelerated cognitive impairment, and death. The relationship between delirium and dementia is complex, as dementia is one of the most significant risk factors for delirium, and delirium is independently associated with an increased risk of subsequent cognitive decline. Here, we provide a current review on the epidemiology, evaluation and management of older adults with delirium, focusing on those instances where it can be mistaken for a dementing illness.
The behavioral variant of frontotemporal dementia (bvFTD) is a clinical syndrome characterized by progressive deterioration of social behavior and cognitive functions. It is one of the most common causes of early-onset dementia and is associated with frontotemporal lobar degeneration (FTLD). The diagnosis of bvFTD can be challenging due to its overlap with other psychiatric disorders, but obtaining a detailed clinical history from a reliable informant is essential. Diagnostic criteria for bvFTD include behavioral and cognitive features such as loss of motivation, social disinhibition, lack of empathy, repetitive behaviors, changes in eating habits, and executive dysfunction. Biomarkers such as brain imaging and genetic testing can help increase diagnostic certainty. Disease progression in bvFTD leads to disability and functional deterioration. Future research aims to improve early recognition, diagnostic accuracy, and the development of disease-modifying treatments.
Diagnosing, treating, and caring for individuals with dementia-related syndroms raises unique legal and ethical questions. Individuals with dementia may be more likely to lack decision-making capacity. Additionally, along with their families, individuals with dementia will face complicated health care related decisions – complicated by limited therapy options. This chapter identifies key legal and ethical questions that come up in the clinical and non-clinical setting relevant to dementia-related syndromes.
Alzheimer’s disease (AD) is the most common type of dementia, accounting for approximately 60% of dementia cases (either alone or in combination); vascular dementia (VaD) accounts for another 10–20%. Most epidemiologic research on dementia has examined prevalence, incidence, and risk factors for either all-cause dementia or AD. This chapter discusses the epidemiology of all-cause dementia and AD, as well as advancement in VaD-related risk factors. Numerous prospective, observational studies have identified a variety of factors that may prevent or delay dementia onset. To better understand the epidemiology of dementia and the potential benefits of implementing interventions, future studies need to address the life course and long preclinical aspects of this disorder. More work is needed to understand the epidemiology and risk factors for non-AD or VaD dementias.
Biomarkers are objectively measured characteristics of a biologic or pathogenic process, which can have a variety of applications, including diagnosing disease and measuring response to therapeutic interventions. Historically, the diagnosis of dementing neurodegenerative diseases has relied on clinical characterization of patients during life, using established clinical diagnostic criteria to assign the diagnosis that best matches the patient’s phenotype, and later performing postmortem brain autopsy to make a definitive diagnosis. Biomarkers have been developed to measure pathophysiological changes that are hallmarks of different neurodegenerative diseases. For example, in Alzheimer’s disease (AD), biomarkers can detect and measure the two pathological hallmarks, amyloid plaques and tau tangles, in living people, using PET, CSF, or plasma testing. Biomarkers have the potential to redefine the diagnosis of AD and neurodegenerative diseases as biological processes rather than as clinical entities. Biomarkers will transform our ability to evaluate and treat neurodegenerative diseases by improving diagnostic accuracy.
Cognitive assessment is used to detect, characterize, and monitor the degree of cognitive impairment in dementia and its earlier stages. Brief cognitive assessments are frequently used across diverse clinical settings and offer scalability as a frontline marker aimed at enhancing the clinical efficiency of diagnostic work-up. These tools have a potential to facilitate early detection and diagnosis of symptomatic cognitive impairment, which is a crucial first step to providing medical and supportive care that benefits people with cognitive impairment and their care partners and for identifying pre-surgical or hospitalized patients who may benefit from delirium prevention interventions. This chapter provides an overview of the most commonly used brief cognitive measures in clinical practice, recent developments and novel measures, and future directions for use of brief cognitive tools across clinical settings including primary, dementia specialist, preoperative, and inpatient care. Recommendations for cultural considerations and optimal implementation paradigms are also discussed.
Alzheimer’s disease typically manifests age 65 or older with a predominant memory dysfunction followed by a progressive impairment of other cognitive domains. Aging is the main risk factor for AD development. However, up to 10% of patients present an early onset (under 65), manifesting more frequently with atypical phenotypes. Amyloid plaques and neurofibrillary tangles due to tau deposition are the main hallmarks of the disease. Despite sharing the same neuropathological features, AD phenotypes present differential tau distribution patterns in cortical areas, being tau-pathology topographically related to the clinical syndrome. In addition to aging, several other factors may contribute to AD pathology and its clinical expression. AD is currently understood as a disease continuum starting with a preclinical phase, progressively leading to mild cognitive impairment and dementia. The development of biological and neuroimaging biomarkers detecting in vivo the defining features of AD has remarkably improved the accuracy and early diagnosis of AD in the last decades.
This chapter focuses on the challenges and experiences of caregiving in dementia, emphasizing the importance of protecting caregiver health and well-being. It discusses effective communication strategies, provides a list of useful web-based educational resources for caregivers, and explores direct and indirect caregiver support interventions. The chapter highlights the need for better support and resources for caregivers, including access to respite care and palliative care services. It also provides strategies for healthcare providers to better engage and support caregivers. Overall, the chapter emphasizes the need to prioritize caregiver health and well-being in dementia care to improve outcomes for both caregivers and individuals with dementia.
Alzheimer’s disease (AD) is the most common type of dementia, accounting for approximately 60% of dementia cases (either alone or in combination); vascular dementia (VaD) accounts for another 10–20%. Most epidemiologic research on dementia has examined prevalence, incidence, and risk factors for either all-cause dementia or AD. This chapter discusses the epidemiology of all-cause dementia and AD, as well as advancement in VaD-related risk factors. Numerous prospective, observational studies have identified a variety of factors that may prevent or delay dementia onset. To better understand the epidemiology of dementia and the potential benefits of implementing interventions, future studies need to address the life course and long preclinical aspects of this disorder. More work is needed to understand the epidemiology and risk factors for non-AD or VaD dementias.
The population of people over the age of 80 is increasing in nearly all regions of the world. Age is tightly linked to the prevalence of dementia and is also linked to the frequency of protein deposition that does not meet neuropathological criteria for dementias, sometimes of unclear recognized importance. Among those over the age of 80, Alzhiemer’s disease remains the most common neuropathology with or without cerebrovascular disease or other co-pathology. Comorbid pathology is increasingly common in older age. The frequency of pure vascular dementia diminishes with age. The tight neuropathological to clinical correlates of dementia seen in younger populations are not as strong in the oldest-old where individuals without dementia oftern demonstrate substantial disease-specific neuropathology and those with dementia sometimes don’t evidence expected neuropathology. In addition to covering these concepts, new entities including Aging-related Tau Astrogliopathy (ARTAG), Limbic Predominant Age-related TDP-43 Proteinopathy (LATE) and Primary Age-related Tauopathy (PART) are briefly discussed.
This chapter discusses the diagnostic evaluation, physical examination, initial diagnostic formulation, investigations, and management of individuals with cognitive and/or behavioral changes. It emphasizes the importance of obtaining a comprehensive history from the patient and an informant, as well as conducting a thorough physical examination. The chapter also provides sample questions for assessing different cognitive domains and lists clues that suggest a non-Alzheimer’s disease etiology of cognitive/behavioral changes. It suggests various diagnostic studies and consultations that may be necessary for each patient. The document highlights the principles of management, including treating reversible causes, minimizing psychoactive medications, promoting regular sleep and exercise, and providing caregiver support. It also discusses the availability of pharmacologic therapies and the importance of providing information and support to families facing dementia-related issues.
Agitation is one of the most distressing behavioral symptoms among hospice-eligible patients with dementia. It compromises patient comfort, increases caregiver burden, and undermines the quality of end-of-life care. Although pharmacologic treatments are frequently used, evidence guiding their safe and effective use in this population remains limited.
Objective
To identify and synthesize existing randomized controlled trials (RCTs) that evaluated interventions for agitation in hospice-eligible patients with dementia, and to assess the quality and relevance of current evidence.
Methods
A narrative review was conducted using systematic search strategies to identify RCTs published between 1990 and 2024 across 8 databases. Studies were included if they (1) focused on hospice-eligible patients with dementia, (2) targeted agitation as a major outcome, and (3) used an RCT design. Studies lacking eligibility criteria, non-RCTs, and non-English articles were excluded.
Results
Of 44 articles screened, only 3 met the inclusion criteria: 2 studies tested nonpharmacological interventions (Namaste and Balancing Arousal Controls Excesses) and 1 tested a pharmacological intervention (sertraline). Results from the nonpharmacological interventions were mixed, and the pharmacologic trial showed no difference between treatment and placebo. Common limitations included small sample sizes, lack of racial and gender diversity, and absence of home-based hospice settings.
Significance of results
There is a critical gap in high-quality and generalizable evidence to guide agitation management at the end of life for patients with dementia. Addressing this gap is essential to improving not only symptom control but also to preserving dignity and reducing caregiver distress in hospice care. Future trials must include diverse populations, incorporate home-based hospice settings, and rigorously evaluate both pharmacologic and nonpharmacologic interventions to support compassionate, patient-centered care.
This review highlights urgent gaps in research and care delivery, underscoring the need for inclusive and scalable intervention designs to address agitation at the end of life.
Instrumental activities of daily living (iADLs) are critical in aging and neurodegenerative research, both diagnostically (e.g., distinguishing dementia from mild cognitive impairment) and as endpoints for trials maintaining or improving functioning. However, measurement has not consistently kept pace with a changed world wherein the ability to navigate technology is pertinent to maintaining independent functioning. The current study used harmonization approaches to link traditional and technological iADLs measures using two samples.
Methods:
262 individuals (53.4% women, 91.7% non-Hispanic White, Mage = 76.2, Meducation = 15.6) completed both measures: (1), the Functional Activities Questionnaire (FAQ), and (2), the new Expanded FAQ. Item response theory (IRT) analyses extracted item parameters to characterize measure psychometrics and accurately determine individual functional ability. Harmonization was done using both nonequivalent groups anchor test (NEAT) and equipercentile linking methods with supplementary traditional iADL parameter estimates from the National Alzheimer Coordinating Center (n = 48,605).
Results:
Correlations verified the measures were sufficiently related (rs = .79), and confirmatory factor analyses and reliability determined all items assessed a single construct. Items from both measures complemented each other to provide more information about milder and more severe functional change. NEAT models converged to provide IRT linking equations and equipercentile conversation tables.
Conclusion:
This study provides critical information for harmonizing evolving technological iADLs with traditional iADLs that are assessed in longstanding cohorts. It further provides support for use of an expanded FAQ.
The Comprehensive Assessment of Neurodegeneration and Dementia (COMPASS-ND) is an observational study of more than 1100 participants across the dementia spectrum. This research note describes the development and features of the neuropsychological research battery, which is available in English and French. The training of staff and procedures for quality assurance are described. The battery assesses learning and memory, processing speed, attention, executive function, visuoperceptual processing, and language, and the available test scores are described. We outline our goals for future work including: (1) increasing the sociodemographic diversity of the participant cohorts, (2) determining the psychometric properties of the battery, (3) establishing robust normative data from control participants followed longitudinally, and (4) examining longitudinal data on individuals at risk of dementia and across the dementia spectrum. The COMPASS-ND neuropsychology data will provide a unique open-access database of deeply phenotyped participants with or at risk of dementia for Canadian and international researchers.
This article reports on a scoping review of legislation, policy, and guidance for England on care-planning co-production within dementia care. Systematic searching of online repositories uncovered nineteen documents, and synthesis revealed seven key categories representing practice requirements and recommendations: ‘person-centred care plan’, ‘accessibility and support’, ‘involvement of person with dementia’, ‘involvement of partners-in-care’, ‘decision-making’, ‘treatment goals and outcomes’, and ‘care plan review’. Findings validate the premise that care-planning should always be co-produced with people affected by dementia as experts-by-experience, and support practice principles previously identified by this group within the empirical literature. Health and social care professionals can use this learning to improve care-planning practice. However, a disconnect persists between national expectations for service providers to co-produce care-planning and users’ reported experiences, with many expressing dissatisfaction at being treated as passive recipients. Consequently care-planning co-production stills needs a stronger evidence base and more practical support to achieve statutory guidance ambitions.
Although timely dementia diagnosis is a global healthcare priority, delays between symptom onset and formal recognition remain common, particularly in regions with limited awareness and high stigma. Such delays are associated with worse clinical outcomes, greater caregiver burden and increased healthcare costs. We report the first large-scale study of diagnostic delays in the United Arab Emirates (UAE) and the wider Middle East and North Africa, with findings relevant to other Gulf Cooperation Council countries, given the region’s unique demographic and cultural landscape.
Aims
To investigate the duration between dementia symptom onset and formal diagnosis, and to identify demographic and clinical factors associated with prolonged delays.
Method
We retrospectively analysed 825 patients diagnosed with dementia over 10 years at a major governmental hospital in Abu Dhabi. The duration of undiagnosed symptoms (DUS) was calculated and multivariable regression was performed, adjusting for age, gender, nationality, dementia subtype and presenting symptoms.
Results
The mean DUS was 34.7 months (s.d. = 28.8), with a median of 24 months (interquartile range 12–48 months). Older adults (≥65 years) experienced longer delays than younger patients. Symptom profile strongly influenced DUS: patients presenting with memory complaints (forgetfulness) had the longest delays, whereas those with behavioural or psychiatric symptoms, such as agitation, hallucinations or disinhibition, were diagnosed earlier. In multivariable regression, older age and memory-related presentations remained independent predictors of longer DUS while gender, nationality and dementia subtype were not significant.
Conclusions
Dementia diagnosis in the UAE is delayed by nearly 3 years, driven mainly by age and presenting symptoms. Reducing these delays through public awareness campaigns, clinician training and pilot primary care screening programmes could improve patient outcomes and reduce the growing health economic burden in the region.
Most people who develop dementia will never be diagnosed, and therefore lack access to treatment and care from specialists in the field. This new edition provides updated guidance on how behavioral symptom reflect the changes occurring in the brain, and how these can help generalist clinicians to accurately diagnose neurodegenerative diseases. This practical book is aimed at healthcare professionals working in neurology, psychiatry and neuropsychology wanting to enhance the skills and knowledge needed to successfully manage these diseases. Simple approaches to bedside mental status testing, differential diagnosis and treatment, and interpreting neuropsychological testing and neuroimaging findings are covered. Introductory chapters outline dementia epidemiology and dementia neuropathology whilst chapters new to this edition describe the improvements in diagnostic capabilities in recent years, including blood based and cerebrospinal biomarkers and emerging biologically based therapies. Chapters on sleep disorders, and chronic traumatic encephalopathy and traumatic brain injury have also been expanded.
Mixed markets can enhance welfare compared to full public or private provision. However, this welfare gain depends on the extent to which market distortions exist. Recent literature demonstrates distortions in mixed long-term care markets worldwide. Our study explores potential distortions in the Dutch institutional market. While all Dutch residential nursing homes are non-profit, for-profit organisations, including private equity (PE) firms, have increasingly entered the market, offering round-the-clock care provided in home-like settings as an alternative to non-profit residential care.
We analysed claims data from 2017–2021 for dementia patients aged 70 and older using multinomial logit and Cox Proportional Hazards models. Specifically, we compared risk selection, upgrading, and care quality (measured by avoidable hospitalisations and mortality) between for-profit and non-profit providers.
Our findings do not suggest increased risk selection, higher upgrading, or lower care quality by for-profit (PE-owned) providers compared to non-profit providers. Consequently, we did not find evidence of strong market distortions in the Dutch institutional long-term care market. These results contrast with the existing international literature, suggesting that adverse incentives in the Netherlands may be influenced more by the way care is provided (in home-like settings versus in residential nursing homes) and financing structures rather than ownership type alone.