Undiagnosed Dementia Research Articles

The Implications of the Timing of Diagnosis of Dementia on the Dementia Caregiver

This is a consumer-reference feedback and feasibility testing of a protocol to obtain qualitative responses of co-residing caregivers to questions regarding the timing of dementia diagnosis and their experience of the disclosure of a diagnosis of dementia. Data collection involved focus group discussions and individual phone interviews of a convenience sample (N = 5) of an Alzheimer’s Australia state based Consumer Advisory Committee. Thematic analysis utilised the Leximancer software. Consumer feedback suggested a reordering of the interview questions and reversing the data collection sequence to reduce the emotional impact on participants. Suggestions were offered to limit the number of participants in the focus group to shorten the duration of the focus group session to prevent fatigue and to provide a support person to improve participant focus group comfort. Responses to the interview questions indicated caregivers retrospectively considered a timely diagnosis would have provided useful dementia-focused planning, reduced the difficulties of living with uncertainty and would have provided more time to obtain information and support. There were strong expectations for medical practitioners to be sensitive to the possibility of dementia and to be cognisant of the diagnostic concerns of caregivers. The diagnosis of dementia and its timing is important to the dementia caregiver in providing an explanation of the problems experienced and allowing earlier organisation of care, future planning and caregiver education to reduce the difficulties of living with undiagnosed and unrecognised dementia.

Dementia: good living in our churches

Purpose – The purpose of this paper, “Dementia – good living in our churches” co-authored with Dr Bute who is a retired GP living with dementia, is to encourage the Church of England to do more for people with dementia living within their parishes. Design/methodology/approach – This document was put together using a case study and a literature review. Findings – As the age range of the country increases there are an increased number of people attending churches who have diagnosed (or undiagnosed) dementia. This document has found that there are a number of areas that the Church of England needs to work on to help people become enveloped within the churches that many of them knew and have grown up with. Originality/value – New case study and up to date research.

Who has undiagnosed dementia? A cross-sectional analysis of participants of the Aging, Demographics and Memory Study.

delays in diagnosing dementia may lead to suboptimal care, yet around half of those with dementia are undiagnosed. Any strategy for case finding should be informed by understanding the characteristics of the undiagnosed population. We used cross-sectional data from a population-based sample with dementia aged 71 years and older in the United States to describe the undiagnosed population and identify factors associated with non-diagnosis. the Aging, Demographics and Memory Study (ADAMS) Wave A participants (N = 856) each underwent a detailed neuropsychiatric investigation. Informants were asked whether the participant had ever received a doctor's diagnosis of dementia. We used multiple logistic regression to identify factors associated with informant report of a prior dementia diagnosis among those with a study diagnosis of dementia. of those with a study diagnosis of dementia (n = 307), a prior diagnosis of dementia was reported by 121 informants (weighted proportion = 42%). Prior diagnosis was associated with greater clinical dementia rating (CDR), from 26% (CDR = 1) to 83% (CDR = 5). In multivariate analysis, those aged 90 years or older were less likely to be diagnosed (P = 0.008), but prior diagnosis was more common among married women (P = 0.038) and those who had spent more than 9 years in full-time education (P = 0.043). people with dementia who are undiagnosed are older, have fewer years in education, are more likely to be unmarried, male and have less severe dementia than those with a diagnosis. Policymakers and clinicians should be mindful of the variation in diagnosis rates among subgroups of the population with dementia.

The Experience of Family Caregivers of Older Korean Americans With Dementia Symptoms

Despite the rapid growth of the older ethnic minority population, knowledge about dementia care for this population is limited. This study examined the experience of dementia caregiving among Korean Americans. We conducted four focus groups with 23 family caregivers of older Korean Americans with dementia symptoms and identified eight themes: (a) struggling and overwhelmed; (b) keeping the cultural roles and responsibility; (c) doing it by themselves; (d) family as a source of stress; (e) limited knowledge and misconceptions; (f) learning as they go; (g) undiagnosed dementia and misunderstandings about medical care; and (h) barriers to use of services and need for culturally responsive services. The findings underscore that Korean Americans need dementia caregiver programs that are linguistically and culturally responsive.

Dementia in the USA: state variation in prevalence.

The number of dementia patients will increase over the next decades. However, we lack information on the geographic distribution of these patients. We aimed to describe the variation of dementia prevalence and to then compare the observed to expected prevalence. This study is based on a 20% sample of Medicare beneficiaries in 2008. The crude dementia prevalence was calculated and age/sex standardized to the US population for states. We used the World Alzheimer Report 2009 prevalence to compare estimates. 4.8 million persons were included. The adjusted prevalence is 8.24%, varying from 5.96 to 9.55% across states. The diagnosed prevalence is lower than the expected in most states. Overall, we estimate over 100 000 undiagnosed dementia patients in Medicare. The high state variation suggests that the number of diagnosed dementia cases does not fall evenly across all states and hence may require different levels of state-level planning.

Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) for the diagnosis of dementia within a general practice (primary care) setting

The IQCODE (Informant Questionnaire for Cognitive Decline in the Elderly) is a commonly used questionnaire based tool that uses collateral information to assess for cognitive decline and dementia. Brief tools that can be used for dementia "screening" or "triage" may have particular utility in primary care / general practice healthcare settings but only if they have suitable test accuracy.A synthesis of the available data regarding IQCODE accuracy in a primary care setting should help inform cognitive assessment strategies for clinical practice; research and policy. We sought to describe the accuracy of IQCODE (the index test) against a clinical diagnosis of dementia (the reference standard). In this review we focus on those studies conducted in a primary care (general practice) setting. A search was performed in the following sources on the 28th of January 2013: ALOIS (Cochrane Dementia and Cognitive Improvement Group), MEDLINE (Ovid SP), EMBASE (Ovid SP), PsycINFO (Ovid SP), BIOSIS (Ovid SP), ISI Web of Science and Conference Proceedings (ISI Web of Knowledge), CINHAL (EBSCOhost) and LILACs (BIREME). We also searched sources specific to diagnostic test accuracy: MEDION (Universities of Maastricht and Leuven); DARE (York University); HTA Database (Health Technology Assessments Database via The Cochrane Library) and ARIF (Birmingham University). We developed a sensitive search strategy; search terms were designed to cover key concepts using several different approaches run in parallel and included terms relating to cognitive tests, cognitive screening and dementia. We used standardized database subject headings such as MeSH terms (in MEDLINE) and other standardized headings (controlled vocabulary) in other databases, as appropriate. We selected those studies performed in primary care settings, which included (not necessarily exclusively) IQCODE to assess for the presence of dementia and where dementia diagnosis was confirmed with clinical assessment. For the "primary care" setting, we included those healthcare settings where unselected patients, present for initial, non-specialist assessment of memory or non-memory related symptoms; often with a view to onward referral for more definitive assessment. We screened all titles generated by electronic database searches and abstracts of all potentially relevant studies were reviewed. Full papers were assessed for eligibility and data extracted by two independent assessors. Quality assessment (risk of bias and applicability) was determined using the QUADAS-2 tool. Reporting quality was determined using the STARDdem extension to the STARD tool. From 71 papers describing IQCODE test accuracy, we included 1 paper, representing data from 230 individuals (n=16 [7%] with dementia). The paper described those patients consulting a primary care service who self-identified as Japanese-American. Dementia diagnosis was made using Benson & Cummings criteria and the IQCODE was recorded as part of a longer interview with the informant.IQCODE accuracy was assessed at various test thresholds, with a "trade-off" between sensitivity and specificity across these cutpoints. At an IQCODE threshold of 3.2 sensitivity: 100%, specificity: 76%; for IQCODE 3.7 sensitivity: 75%, specificity: 98%.Applying the QUADAS-2 assessments, the study was at high risk of bias in all categories. In particular degree of blinding was unclear and not all participants were included in the final analysis. It is not possible to give definitive guidance on the test accuracy of IQCODE for the diagnosis of dementia in a primary care setting based on the single study identified. We are surprised by the lack of research using the IQCODE in primary care as this is, arguably, the most appropriate setting for targeted case finding of those with undiagnosed dementia in order to maximise opportunities to intervene and provide support for the individual and their carers.

Alzheimer's Disease is Associated with Decreased Risk of Cancer-Specific Mortality: A Prospective Study (NEDICES)

Previous studies have shown that Alzheimer's disease (AD) is associated with a reduced risk of cancer. However, most studies exclude those with undiagnosed dementia. The only way to overcome this methodological issue is to examine all the participants or to screen the population for symptoms of dementia with a validated instrument and confirm any suspected dementia patients with a clinical examination (i.e., a two-phase investigation method). We used this methodology to estimate whether cancer-specific mortality is associated with AD and other types of dementia in a prospective population-based study (NEDICES) involving 5,278 elderly people. Community-dwelling subjects with and without dementia were identified and followed for a median of 12.5 years, after which the death certificates of those who deceased were examined. A total of 1,976 (47.1%) died, including 277 who had possible or probable AD and 126 with non-AD dementia. Cancer was reported significantly less often in those with possible or probable AD (5.8%) or non-AD dementia (6.3%) than in those without dementia (26.5%). In an unadjusted Cox model, hazard ratio (HR) of cancer-specific mortality in participants with AD = 0.45 (p = 0.002) and HR in participants with non-AD dementia = 0.62 (p = 0.179) when compared to the non-demented group. In a Cox model that adjusted for a variety of demographic factors and co-morbidities, HRs of cancer-specific mortality in participants with AD = 0.50 (p = 0.028) and 0.97 (p = 0.942) in non-AD dementia. This study provides further evidence of an inverse association between cancer and AD.

Under Reporting of Dementia Deaths on Death Certificates using Data from A Population-Based Study (NEDICES)

Previous studies have shown that dementia is frequently omitted as a cause of death from the death certificate in patients with long-standing dementia. However, most studies exclude those undiagnosed dementia sufferers in the population. In order to overcome this problem, it is necessary to examine all the participants or to screen the population for symptoms of dementia and confirm the diagnosis with a clinical examination (two-phase approach). We used this latter methodology to estimate the proportion of reporting of dementia on death certificates in a prospective population-based study (NEDICES), involving 4,197 elderly people. Community-dwelling subjects with and without dementia were identified and followed during a median of 12.5 years, after which the death certificates of those who deceased were examined. A total of 1,976 (47.1%) died (403 subjects with dementia). Dementia was rarely reported as the primary cause of death, even in known cases of dementia (20.8%). Indeed it was reported in only 13.3% of those with mild dementia and 24.3% of those with moderate or severe dementia; in 24.9% of those with possible or probable Alzheimer's disease; and in 11.9% of those with non-Alzheimer dementia. In a stepwise multiple logistic regression analysis with the dependent variable being presence or absence of dementia on the death certificate, the significant associated independent variables were age at death, severity of dementia, and etiology of dementia. We conclude that reporting of dementia on death certificates remains poor. This suggests a lack of awareness of the importance of dementia as a cause of death.

Comparison between elderly inpatient fallers with and without dementia

This study aimed to examine the various factors associated with inpatient falls among patients with and without dementia in a hospital setting. This was a retrospective one-year study using data collected from Singapore General Hospital's electronic reporting system for inpatient falls. In the study period, 298 patients aged ≥ 65 years fell during their hospital stay. The majority of the patients (n = 248) did not have dementia. In our study, fallers with dementia were more likely to use ambulatory aids, be visually impaired and have urinary incontinence. More patients with dementia than those without had a history of previous falls, and were placed on fall precaution with restricted freedom of movement, which at times, included restraints. However, the difference between patients who were put on restraints and those who were allowed to move freely was not statistically significant. The majority of falls in both groups occurred at the bedside. We found that fallers without dementia were more likely to fall during the morning shift, whereas fallers with dementia were more likely to fall during the night shift. Fallers with dementia were more likely to be confused at the time of the fall. In our study, we found that fallers with dementia were more likely to have visual impairment, have urinary incontinence, use walking aids, and to be confused and physically restrained at the time of the fall. The fallers without dementia in our study may have undiagnosed dementia.

Cognitive assessment: a guide for community nurses

Ageing increases the risks of dementia and there are an estimated 667,000 people in England living with dementia. Less than half have a formal diagnosis. Community nurses are now being asked to screen older people for dementia under the Commissioning for Quality and Innovation framework. This article provides a brief explanation of common screening tools and explains the community nurse's role in identifying people who may have undiagnosed dementia.

A Program to Improve Detection of Undiagnosed Dementia in Primary Care and Its Association with Healthcare Utilization

Alzheimer's disease and related dementias are common and costly, with increased healthcare utilization for patients with these disorders. The current study describes a novel dementia detection program for veterans and examines whether program-eligible patients have higher healthcare utilization than age-matched comparison patients. Using a telephone-based case-finding approach, the detection program used risk factors available in the electronic medical record (EMR) and telephone-based brief cognitive screening. Holding illness severity constant, dementia detection and healthcare utilization were compared across age-matched groups with and without program risk factors. Five Veterans Affairs Healthcare Network Upstate New York primary care clinics. Veterans aged 70 years and older. EMR data and the Charlson comorbidity index. Program-eligible patients (n= 5,333) demonstrated significantly greater levels of medical comorbidity relative to comparison patients and were on average more than twice as likely to be admitted to the hospital. They also had nearly double the number of outpatient visits to several services. Similar patterns were seen in those who screened positive on a brief cognitive measure, compared with those who screened negative. A novel program using EMR data to assist in the detection of newly diagnosed dementia in a clinical setting was found to be useful in identifying older veterans with multiple comorbid medical conditions and increased utilization of hospital and clinic services. Results suggest undetected cognitive impairment and dementia may significantly contribute to healthcare utilization and costs of care in older veterans.

Case-finding to identify undiagnosed dementia

Rachael McIntyre, Mina Gupta and Sham Malhi provide an overview of a dementia case-finding project in Sandwell and west Birmingham, which has identified previously undiagnosed dementia patients

Development and validation of a brief dementia risk assessment tool for use in primary care

Undiagnosed dementia is common in older adults, and detection of 'any cognitive impairment' is now federally mandated as part of the Medicare Annual Wellness Visit. Yet screening all older adults for cognitive impairment may result in unacceptably high false positive rates, particularly in younger Medicare patients. The objective of our study was to develop and validate a brief Dementia Risk Assessment (DRA) tool for use in primary care to enable clinicians to identify high-risk patients who should be targeted for cognitive screening. The DRA was developed and validated using data from four existing cohort studies: the Cardiovascular Health Study (CHS), Framingham Heart Study (FHS), Health and Retirement Study (HRS), and Sacramento Area Latino Study on Aging (SALSA). These studies were selected because they included data on incident dementia and a broad palette of potential risk markers and together provided representation of individuals from diverse geographic and race/ethnic backgrounds. We first calculated 6-year dementia risk as a function of age and set ≥80 years as the age at which cognitive screening should be considered based on age alone. In participants age 65–79 years, we then performed Cox proportional hazards analyses and used an iterative process to identify a common set of dementia risk predictors. Meta-analysis was performed to develop a DRA point score based on the predictors retained in the final model. The final DRA tool included age (1 point/year), <12 years education (9 points), stroke (6 points), diabetes mellitus (3 points), body mass index <18.5 kg/m 2 (8 points), requiring assistance with money or medications (10 points), and evidence of depression (anti-depressant use or self-reporting “everything an effort” ≥3 days/week, 6 points). Accuracy based on Harrell's c statistic (95% confidence interval) was CHS, 0.68 (0.65, 0.72); FHS, 0.77 (0.73, 0.82); HRS, 0.76 (0.74, 0.77); and SALSA, 0.78 (0.72, 0.83). Across all 4 studies, a point-value of ≥22 identified a group of 65–79 year-olds whose 6-year dementia risk was comparable to 80–84 year-olds. The DRA is a simple tool that can be used in primary care to identify older patients with an increased risk of developing dementia who should be considered for cognitive screening.

Dementia skills and competencies for primary care liaison: a model for improving identification and timely diagnosis

The need to improve the response of primary care in terms of identification of people with undiagnosed dementia has long been recognised. The role of Primary Care Liaison was identified as a possible solution. An in-depth consultation was undertaken to identify professional competencies required in executing such a role. Comprehensive literature and policy reviews were conducted to establish draft competencies or different options/combinations of competencies and competency levels. Consultations with a wide range of professional stakeholders (n = 23) and over 70 users and carers were conducted through focus groups, electronic document circulation and telephone interviews. An Equality Impact Assessment was conducted concurrent to the consultation. The literature demonstrated a clear need both to improve the rate of diagnosis for people with dementia and to improve the way in which the diagnosis is made. The stakeholder consultation repeatedly affirmed that without a diagnosis the person with dementia and their caregivers did not get access to the appropriate services, and validated the need for a role that would be able to improve a system that would deliver an early and 'timely' diagnosis. Competencies, based on the literature and policy documents, were developed and debated through the consultation processes. Three main areas of competency were identified: counselling; screening; and health education and promotion. The competencies identified require a skilled experienced professional approach. A useful team model would be that the role is placed within a 'GP cluster' as accessibility to GP records and collaborative working with GPs is essential within the role. Personal continuing professional development has a high profile in maintaining these competencies.

Why I'm Wary of Delirium Risk With Hospitalization

Why I'm Wary of Delirium Risk With Hospitalization

In silico modeling systems: Learning about the prevalence and dynamics of dementia through virtual experimentation

Virtual experimentation using computer modeling creates opportunities for researchers who want to better understand disease processes, foresee effects of future demographics, and evaluate combinations of interventions when applied to larger target groups. We created a computer model of dementia prevalence consisting of six population groups representing diagnosed and undiagnosed dementia at mild, moderate, and severe levels. Dynamic transitions between these groups corresponded to the gradual progression of disease. The seventh group represented the general population without dementia aged >60 years from which new dementia cases emerged. Through a series of virtual experiments we estimated future changes in the severity-specific prevalence of dementia in Australia. The projected total prevalence of dementia in Australia for year 2040 changed from 742,000 to 986,000 (+33%) and to 433,000 (-42%) when the incidence rate was altered by ±50%. Increasing the transition time between mild and moderate dementia from 5 to 7 years and between moderate to severe from 7 to 9 years increased the prevalence of mild dementia by 23% and decreased the prevalence of severe dementia by 24%. As computer modeling becomes more accepted, in silico experiments are being routinely performed to update demographic projections. Despite its simplicity, the framework of this model integrates a large pool of knowledge and consists of components which are dynamically interconnected. The computational logic underpins series of assumptions and binds them together with demographic data.

An economic evaluation of early assessment for Alzheimer's disease in the United Kingdom

Diagnosing and treating patients with Alzheimer's disease (AD) at an early stage should improve the quality of life of the patient and caregiver. In the United Kingdom, cost-effectiveness of early assessment of individuals presenting with subjective memory complaints and treating those with AD with donepezil was evaluated. A discrete event simulation of AD progression and the effect of treatment interventions was developed. Patient-level data from donepezil trials and a 7-year follow-up registry were used to model correlated longitudinal rates of change in cognition, behavior, and function. Other epidemiological and health services data, including estimates of undiagnosed dementia and delays in diagnosis, were based on published sources. Simulated individuals were followed up for 10 years. In the base-case estimates, 17 patients need to be assessed to diagnose one patient with AD, resulting in an average assessment cost of £4100 ($6000; $1 US = £0.68 UK) per patient diagnosed (2007 cost year). In comparison with a scenario without early assessment or pharmacologic treatment, early assessment reduces health care costs by £3600 ($5300) per patient and societal costs by £7750 ($11,400). Savings are also substantial compared with treatment without early assessment, averaging £2100 ($3100) in health care costs, and £5700 ($8400) in societal costs. Results are most sensitive to estimates of patient care costs and the probability of patients reporting subjective memory complaints. In probabilistic sensitivity analysis, early assessment leads to savings or is highly cost-effective in the majority of cases. Although early assessment has significant up-front costs, identifying AD patients at an early stage results in cost savings and health benefits compared with no treatment or treatment in the absence of early assessment.

New Diagnoses of Dementia Among Older Patients Admitted to Postacute Care

To determine the prevalence of dementia and the proportion of undiagnosed dementia in elderly patients admitted to postacute care, and to identify patients' characteristics associated with undiagnosed dementia. Cross-sectional study. Academic postacute rehabilitation facility in Lausanne, Switzerland. Patients (N=1764) aged 70 years and older. Data on socio-demographic, medical, functional, and affective status were collected upon admission. Data on cognitive performance (Mini-Mental State Exam [MMSE]), and cognition-related discharge diagnoses were abstracted through a structured review of discharge summaries. Overall, 24.1% (425/1764) patients had a diagnosis of dementia, most frequently secondary to Alzheimer's disease (260/425, 61.2%). Among dementia cases, 70.8% (301/425) were newly diagnosed during postacute stay. This proportion was lower among patients referred from internal medicine than from orthopedic/surgery services (65.8% versus 74.8%, P=.042). Compared to patients with already diagnosed dementia, those newly diagnosed were older, lived alone more frequently, and had better functional status and MMSE score at admission (all P < .05). In multivariate analysis, previously undetected dementia remained associated with older age (OR=2.4 for age 85 years and older, 95% CI 1.5-4.0, P=.001) and normal MMSE at admission (OR=5.9, 95% CI 2.7-12.7, P < .001). Dementia was present in almost a fourth of elderly patients referred to postacute care, but was diagnosed in less than a third before admission. Oldest old patients appear especially at risk for underrecognition. These results emphasize the high diagnostic yield of systematic cognitive assessment in the postacute care setting to improve these patients' management and quality of life.

18F Stilbenes and Styrylpyridines for PET Imaging of Aβ Plaques in Alzheimer’s Disease: A Miniperspective

¹⁸F Stilbenes and Styrylpyridines for PET Imaging of Aβ Plaques in Alzheimer’s Disease: A Miniperspective

Undiagnosed dementia and value of serial cognitive impairment screening in developing countries: A population‐based study

We conducted a population-based prospective study in 420 older persons to examine the prevalence of undiagnosed dementia and validity of the Chula Mental Test (CMT) as well as value of serial administration of the CMT and its score evolution over 2 years. The CMT score was obtained in 1997 and 1999 surveys. In 1999, all participants were evaluated by a geriatrician to make diagnoses of dementia according to the 4th edn of the Diagnostic and Statistical Manual criteria. Information on previous diagnosis of dementia by physicians was collected. Validity of the CMT was determined by the receiver-operator curve. The pattern of cognitive evolution over 2 years was analyzed. Of 420 subjects, 23 had dementia, of which 22 (95.6%) were undiagnosed. The prevalence (95% confidence interval) of dementia and undiagnosed dementia were 5.5% (3.3-7.7%) and 5.3% (4.1-6.3%), respectively. With original cut-off (15/14) of the CMT, the sensitivity and specificity were 0.74 and 0.86, respectively. The best cut-off found in this study was 16/15 which provided better sensitivity (0.91) but worse specificity (0.76) than those of the original cut-off. Pattern of cognitive evolution was heterogeneous. The heterogeneous change was substantial in subjects with mild low CMT score. Cognitive evolution pattern showed that serial administration of the CMT could reduce workload of primary care physicians and might be useful in a screening protocol. The prevalence of undiagnosed dementia in community-dwelling Thai older persons was high. The CMT was valid for use in a community. Heterogeneous evolution of cognitive function and value of serial cognitive impairment screening was found.