Dementia Registry Research Articles

Advancing Dementia Care in Austria: developing a Dementia Registry using a multimethod approach

Abstract Background Austria faces an increasing demand for dementia care in an ageing population. However, a lack of representative data hampers evidence-based policy development and evaluation of care. To address this gap, the Austrian National Institute of Public Health is undertaking the task of developing the Austrian Dementia Quality Registry (ÖDQR). Methods Based on the AIHTA Good Practice Framework for Dementia Registries, the development and testing of the ÖDQR has unfolded in 4 distinct phases: 1) planning; 2) registry design (including definition of quality indicators and minimum data set, recruitment, and governance); 3) definition of data collection, sources, and management; 4) pilot testing. A steering committee of government representatives and dementia care experts was convened to oversee the project. A scientific committee provided oversight and ensured methodological rigor. Working groups of national and international dementia care experts focused on standards for diagnosis and therapy, activities of daily living and quality of life, legal aspects, and technical implementation, thus contributing to the content development of the ÖDQR. Results An initial systematic literature review informed the selection of quality indicators in the working groups. A conceptual framework of 15 descriptive and 30 quality indicators was developed. Preliminary results of pilot testing indicate feasibility and content validity. As a result, the ÖDQR will be established as a longitudinal survey-based registry, based on an instrument comprising 163 variables and emphasizing data collection across care settings. Legal and technical frameworks are being developed. Conclusions The öDQR holds the promise of informing evidence-based policy and improving the quality of dementia care in Austria. Careful planning and collaboration have laid the foundation for a data repository that will inform policy and improve care for people with dementia and their caregivers. Key messages • Dementia registries require a complex development to assure validity and adherence. • The Austrian Dementia Registry aims to establish best practice by focusing on the life situation of those affected by this condition.

One year analysis of Prospective Memory Clinics Registry in Qatar: A Critical Tool for Dementia Research and Policy Planning.

The Global Dementia Observatory (GDO) is a monitoring and accountability tool for the Global Action Plan on Public Response to Dementia 2017-25. Evidence from dementia registries may be utilized to better address WHO efforts in member countries, as well as to improve clinical practice and public health policy. The goal of this study was to analyze one-year data from a prospective memory clinic registry. This study was a baseline analysis of prospective memory clinics registry data of Qatar from January 1, 2023, through December 31, 2023. This study investigated the demographic, clinical, and lifestyle characteristics of 464 participants who were enrolled in memory clinics. Mild neurocognitive disorders were the most prevalent diagnoses in both sexes, affecting 61.5% of male patients and 63.7% of female patients. Dementia was slightly more common in men (19.8% vs. 18.9%), although delirium was more common in women (1.9% vs. 0%). In terms of risk factors, the analysis revealed that females were more likely to be obese (36.8% vs. 16.7% in males), while males had higher rates of diabetes (61.1% vs. 51.9% in females), hypertension (69.4% vs. 62.7% in females), and smoking (17.1% vs. 3.8% in females). The findings of this study highlight the differences in dementia risk factors between genders and races, highlighting the need for customized interventions. Furthermore, the registry is a great resource for policymakers and healthcare professionals, providing evidence-based suggestions to improve dementia care, increase the well-being of patients and caregivers, and maximize resource allocation.

Sex differences in dementia diagnosis: a fourteen-year retrospective analysis of cases using the Registry of Dementia of Girona

Objective To evaluate the impact of sociodemographic and clinical sex/gender-associated factors on dementia severity at the time of diagnosis. Methods Retrospective, cross-sectional study using 2007–2020 data from the Registry of Dementia of Girona (ReDeGi), collecting information from new dementia diagnoses in the seven hospitals of the Health Region of Girona (Northeast region of Catalonia, Spain). Sociodemographic and clinical variables were compared by sex and dementia severity at diagnosis. A multivariate analysis stratified by sex evaluated the risk of having a moderate/severe dementia diagnosis. Results Of 9614 new dementia cases, 6040 (62.8%) were women, and 3574 (37.2%) were men. Women and men aged 75–85 years had 27.9% (p = .003) and 43.1% (p < .001) less risk of moderate/severe diagnosis, respectively, than those >85. Being institutionalized increased the risk of moderate/severe diagnosis more in women (159.9%; p < .001) than in men (114.8%; p = .030). Being single and having a higher education increased the risk of moderate/severe diagnosis by 76.2% (p = .039) and 69.8% (p = .021), respectively, only in women. Conclusions Age, education level, marital status, and place of residence were differentially associated with moderate/severe dementia at the time of diagnosis in women and men, indicating sex/gender differences in dementia severity at diagnosis, with an increased impact on women.

#876 Albuminuria and the risk of dementia and different dementia subtypes: the Stockholm Creatinine Measurements (SCREAM) project

Abstract Background and Aims Studies investigating the association of chronic kidney disease and dementia predominantly focused on estimated glomerular filtration rate (eGFR) rather than albuminuria. The few studies focusing on albuminuria reported conflicting results, probably due to a lack of power, not taking into account the different dementia subtypes, not adjusting for eGFR, and the use of different albuminuria measurement techniques. This study therefore investigated the eGFR-independent risk of all-cause and type-specific dementia associated with albuminuria, quantified as urine albumin-creatinine ratio (ACR) and by dipstick, in a large population. Method We included subjects from the Stockholm Creatinine Measurements (SCREAM) project without a history of dementia and with age ≥65 years. The main analyses involved 138 688 subjects with at least one ACR test, and for sensitivity analyses, we involved 170 572 subjects with at least one dipstick proteinuria test. Albuminuria was quantified as KDIGO albuminuria A1-A3 stages. The primary outcome was incidence of all-cause dementia, and the key secondary outcomes were incidence of type-specific dementia. Dementia incidence was ascertained by record linkage with the national dementia registry (SveDem). ICD-10 coding was also used to classify subtypes only when there were no available dementia records in SveDem. Multivariable Cox regression models were used to calculate hazard ratios (HRs, 95% CIs) crude, and adjusted for confounders including baseline eGFR. Results During a median follow-up of 3.9 (IQR, 1.8-7.2) years, 9 970 subjects developed de novo dementia. After multivariable adjustment including baseline eGFR, subjects with an ACR of 30-299 mg/g or ≥300 mg/g had a 26% (HR, 1.26; 95% CI, 1.20-1.32) and 36% (HR, 1.36; 95% CI, 1.24-1.50) higher risk of developing all-cause dementia, respectively, when compared to subjects with an ACR &amp;lt;30 mg/g. Subjects with an ACR of 30-299 mg/g also presented a higher risk of developing several type-specific dementia, including Alzheimer's dementia (HR, 1.09, 95% CI, 1.01-1.17), vascular dementia (HR, 1.35, 95% CI, 1.22-1.48), and unspecified dementia (HR, 1.54, 95% CI, 1.41-1.69). No significant associations between albuminuria and the incidence of Lewy body dementia and Parkinson's Disease with dementia, frontotemporal dementia, as well as other types of dementia were observed. These results were generally robust in several sensitivity analyses, including replicating our main analyses in subjects with a dipstick proteinuria test instead of an ACR. Conclusion Increased albuminuria is associated with a higher risk of all-cause, Alzheimer's, and vascular dementia, independent of baseline eGFR and different albuminuria measurement techniques.

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

BackgroundApproximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support.MethodsThis retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support.ResultsInformation and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor.ConclusionThis study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.

Prevalence and Determinants of Diagnosed Dementia: A Registry Linkage Study Linking Diagnosis of Dementia in the Population-Based HUNT Study to Registry Diagnosis of Dementia in Primary Care and Hospitals in Norway.

A timely diagnosis of dementia can be beneficial for providing good support, treatment, and care, but the diagnostic rate remains unknown and is probably low. To determine the dementia diagnostic rate and to describe factors associated with diagnosed dementia. This registry linkage study linked information on research-based study diagnoses of all-cause dementia and subtypes of dementias, Alzheimer's disease, and related dementias, in 1,525 participants from a cross-sectional population-based study (HUNT4 70+) to dementia registry diagnoses in both primary-care and hospital registries. Factors associated with dementia were analyzed with multiple logistic regression. Among those with research-based dementia study diagnoses in HUNT4 70+, 35.6% had a dementia registry diagnosis in the health registries. The diagnostic rate in registry diagnoses was 19.8% among home-dwellers and 66.0% among nursing home residents. Of those with a study diagnosis of Alzheimer's disease, 35.8% (95% confidence interval (CI) 32.6-39.0) had a registry diagnosis; for those with a study diagnosis of vascular dementia, the rate was 25.8% (95% CI 19.2-33.3) and for Lewy body dementias and frontotemporal dementia, the diagnosis rate was 63.0% (95% CI 48.7-75.7) and 60.0% (95% CI 43.3-75.1), respectively. Factors associated with having a registry diagnosis included dementia in the family, not being in the youngest or oldest age group, higher education, more severe cognitive decline, and greater need for help with activities of daily living. Undiagnosed dementia is common, as only one-third of those with dementia are diagnosed. Diagnoses appear to be made at a late stage of dementia.

Cholinesterase inhibitors are associated with reduced mortality in patients with Alzheimer's disease and previous myocardial infarction.

Cholinesterase inhibitors (ChEIs) are the first-line symptomatic pharmacologic treatment for patients with mild-to-moderate Alzheimer's disease (AD). Although the target organ for this group of drugs is the brain, inhibition of the enzyme may affect cardiac function through vagotonic and anti-inflammatory effects. To assess the impact of ChEIs on outcomes in patients with AD who have experienced myocardial infarction (MI) prior to the AD diagnosis. Patients who had experienced MI before they were diagnosed with AD or Alzheimer's mixed dementia between 2008 and 2018 were identified from the Swedish Dementia Registry (SveDem, www.svedem.se), which was linked to the National Patient Registry to obtain data on MI and mortality. Cox proportional hazards regression model among a propensity score-matched dataset was performed to assess the association between ChEI treatment and clinical outcomes. Of 3198 patients with previous MI and a diagnosis of AD or mixed dementia, 1705 (53%) were on treatment with ChEIs. Patients treated with ChEIs were more likely to be younger and have a better overall cardiovascular (CV) risk profile. The incidence rate of all-cause death (per 1000 patient-years) in the propensity-matched cohort of 1016 ChEI users and 1016 non-users was 168.6 in patients on treatment with ChEIs compared with 190.7 in patients not on treatment with ChEIs. In this propensity-matched cohort, treatment with ChEIs was associated with a significantly lower risk of all-cause death (adjusted hazard ratio 0.81, 95% confidence interval 0.71-0.92) and a greater reduction with higher doses of ChEIs. While in the unadjusted analysis, ChEIs were associated with a lower risk of both CV and non-CV death, only the association with non-CV death remained significant after accounting for baseline differences. Treatment with ChEIs was associated with a significantly reduced risk of all-cause death, driven by lower rates of non-CV death in a nationwide cohort of patients with previous MI and a diagnosis of AD or mixed dementia. These associations were greater with higher ChEI doses. We assessed the association between cholinesterase inhibitors (ChEIs) and clinical outcomes in a nationwide cohort of patients with previous myocardial infarction (MI) and a diagnosis of Alzheimer's disease (AD) or mixed dementi. In propensity-matched analysis, treatment with ChEIs was associated with a 19% reduction in all-cause death driven by non-cardiovascular death. The reduction in all-cause death was greater with the higher doses of ChEIs.

Impact of social network composition on cognitive decline: Digital Dementia Registry Bavaria (digiDEM Bayern).

Currently, there is no curative treatment for dementia. The implementation of preventive measures is of great importance. Therefore, it is necessary to identify and address individual and modifiable risk factors. Social isolation, defined through social networks, is a factor that may influence the onset and progression of the disease. The networks of older people are mostly composed of either family or friends. The aim of this study is to examine the influence of social isolation and network composition on cognition over the course of 12 months in people with cognitive impairment. Data basis is the multicentre, prospective, longitudinal register study 'Digital Dementia Registery Bavaria-digiDEM Bayern'. The degree of social isolation was assessed using the Lubben Social Network Scale- Revised (LSNS-R) and the degree of cognitive impairment using the Mini Mental State Examination (MMSE), conducted at baseline and after 12 months. Data were analysed using pre-post ANCOVA, adjusted for baseline MMSE, age, gender, education, living situation and Barthel-Index. 106 subjects (78.9 ± 8.2 years; 66% female) were included in the analysis. The mean MMSE score at baseline was 24.3 (SD = 3.6). Within the friendship subscore, risk for social isolation was highly prevalent (42.5%). Though, there was no difference between individuals with higher/ lower risk of social isolation within the friendship-network after adjusting for common risk factors in cognitive decline over time, F (1,98) = .046, p = .831, partial η2 = .000. The results of this study showed that the risk of social isolation from friends is very high among people with cognitive impairment. However, social isolation does not appear to have a bearing influence on the course of cognition. Nevertheless, it is important for people with cognitive impairment to promote and maintain close social contacts with friends.

Piloting a research registry for dementia: The Egyptian Dementia Network (EDN) registry

AbstractBackgroundDementia and aging problems are currently growing worldwide and are considered public health priorities. The availability of epidemiological and clinical data on the disease greatly impacts our understanding of the disease and, hence, improves disease management and prevention strategies. As part of the development of a national dementia registry for Egypt that would be of great importance as we currently lack the exact epidemiological data and rely only on estimates, the present study is aiming to pilot a cohort for the first national registry for dementia in Egypt, The Egyptian Dementia Network (EDN) registry.MethodEDN will provide a huge set of data as a promising platform for analyzing the prevalence, incidence, and major causes of the disease in Egypt. Our study will coordinate the track of early‐onset AD (EOAD) and vascular dementia cases, which have recently shown a rising pattern, based on the first 100 cases from each cohort and a similar number of matched controls collected from different centers across Egypt.ResultAs a first stage, we developed an SOP for the registry workflow, a network of collaborating centers, and a unified sheet for data collection (both clinical and epidemiological). We will then develop a tool to register the collected data. The use of big data analytics will help analyze the collected data and identify the major causes of dementia in Egypt.ConclusionAs a research registry, the main aim is to start understanding the causes, mechanisms, and courses of dementia in Egypt. The final long‐term goal is to validate the predictive ability of the registry data on the Egyptian HCAP (Harmonized Cognitive Assessment Protocol), where the ability of data to predict future dementia patients will be tested on a longitudinal cohort of aging population.

Vascular risk factors are a major contributor to cognitive impairment and degenerative dementia in India

AbstractBackgroundThe burden of vascular contribution to cognitive impairment and dementia is high in low and middle‐income countries (LMIC) like India. It is crucial to determine burden of vascular contribution to dementia in India, to develop effective preventive and treatment strategies. The aim of the study was to determine the prevalence of vascular risk factors across the spectrum of cognitive impairment and dementia in a large dementia cohort in South India.MethodPatients with cognitive impairment and dementia from the dementia registries of two University referral hospitals in South India were included. All patients underwent clinical, cognitive and imaging study and standard criteria were used to diagnose MCI, AD, FTD, VaD and mixed dementia. Vascular risk factor profile was determined in patients, and the presence of hypertension, diabetes, cardiac disease, stroke, smoking and chronic alcoholism were noted.ResultOf a total 1811 patients with cognitive impairment, 180 (9.9%) patients were diagnosed to have MCI, 517 (28.5%) AD, 205 (11.3%) FTD, 844 (46.6%) had VaD &amp; 64 (3.5%) had mixed dementia. Overall, hypertension was the most prevalent vascular risk factor (62.7%) followed by stroke (46.6%). 35.5% of patients had diabetes mellitus(DM), 15.2% had chronic alcoholism, 14.4% were smokers and 14.2% had history of cardiac disorders.Hypertension was most commonly encountered in patients with AD (76.4%), followed by mixed Dementia (68.75%), VaD (63.4%), MCI (44.4%) and FTD (39.5%).DM was present in a high proportion of all subtypes of cognitive impairment and dementia (24.4% to 46.8%). The proportion of patients with stroke was highest in VaD (82.1%), but was also associated with one‐fourth of patients with AD and 15% of patients with mixed dementia. Frequency of smoking, chronic alcoholism and cardiac disease was highest in mixed dementia and VaD.ConclusionOur results demonstrate that a large burden of vascular risk factors exist in all forms of cognitive impairment and dementia in the Indian context. Hypertension and diabetes were found to be commonly associated with neurodegenerative dementia, in addition to vascular and mixed dementia. This large burden of vascular contribution represents needs and an opportunity to implement strategies to reduce burden of dementia in India and other LMICs

Piloting a research registry for dementia: The Egyptian Dementia Network (EDN) registry

AbstractBackgroundDementia and aging problems are currently growing worldwide and are considered public health priorities. The availability of epidemiological and clinical data on the disease greatly impacts our understanding of the disease and, hence, improves disease management and prevention strategies. As part of the development of a national dementia registry for Egypt that would be of great importance as we currently lack the exact epidemiological data and rely only on estimates, the present study is aiming to pilot a cohort for the first national registry for dementia in Egypt, The Egyptian Dementia Network (EDN) registry.MethodEDN will provide a huge set of data as a promising platform for analyzing the prevalence, incidence, and major causes of the disease in Egypt. Our study will coordinate the track of early‐onset AD (EOAD) and vascular dementia cases, which have recently shown a rising pattern, based on the first 100 cases from each cohort and a similar number of matched controls collected from different centers across Egypt.ResultAs a first stage, we developed an SOP for the registry workflow, a network of collaborating centers, and a unified sheet for data collection (both clinical and epidemiological). We will then develop a tool to register the collected data. The use of big data analytics will help analyze the collected data and identify the major causes of dementia in Egypt.ConclusionAs a research registry, the main aim is to start understanding the causes, mechanisms, and courses of dementia in Egypt. The final long‐term goal is to validate the predictive ability of the registry data on the Egyptian HCAP (Harmonized Cognitive Assessment Protocol), where the ability of data to predict future dementia patients will be tested on a longitudinal cohort of aging population.

Racial Differences in Clinical Presentation in Individuals Diagnosed With Frontotemporal Dementia

Prior research suggests there are racial disparities in the presentation of dementia, but this has not been investigated in the context of frontotemporal dementia (FTD). To explore racial disparities in dementia severity, functional impairment, and neuropsychiatric symptoms in individuals with a diagnosis of FTD. This exploratory cross-sectional study of National Alzheimer's Coordinating Center (NACC) data collected between June 2005 to August 2021 evaluated Asian, Black, and White individuals with a diagnosis of FTD (behavioral variant FTD or primary progressive aphasia). Excluded were races with limited data, including American Indian or Alaska Native (n = 4), Native Hawaiian or other Pacific Islander (n = 3), other (n = 13), and unknown (n = 24), and participants with symptom duration more than 4 SDs above the mean. Racial differences at initial NACC visit were examined on Clinical Dementia Rating Dementia Staging Instrument plus NACC Frontotemporal Lobar Degeneration Behavior & Language Domains (FTLD-CDR), Functional Assessment Scale, and Neuropsychiatric Inventory using regression models. Matching was also performed to address the imbalance between racial groups. The final sample comprised 2478 individuals, of which 59 (2.4%) were Asian, 63 (2.5%) were Black, and 2356 (95.1%) were White. The mean (SD) age at initial visit was 65.3 (9.4) years and symptom duration at initial visit was 67.5 (35.6) months. Asian and Black individuals were considerably underrepresented, comprising a small percent of the sample. Black individuals had a higher degree of dementia severity on FTLD-CDR (β = 0.64; SE = 0.24; P = .006) and FTLD-CDR sum of boxes (β = 1.21; SE = 0.57; P = .03) and greater functional impairment (β = 3.83; SE = 1.49; P = .01). There were no differences on FTLD-CDR and Functional Assessment Scale between Asian and White individuals. Black individuals were found to exhibit a higher frequency of delusions, agitation, and depression (delusions: odds ratio [OR], 2.18; 95% CI, 1.15-3.93; P = .01; agitation: OR, 1.73; 95% CI, 1.03-2.93; P = .04; depression: OR, 1.75; 95% CI, 1.05-2.92; P = .03). Asian individuals were found to exhibit a higher frequency of apathy (OR, 1.89; 95% CI, 1.09-3.78; P = .03), nighttime behaviors (OR, 1.72; 95% CI, 1.01-2.91; P = .04), and appetite/eating (OR, 1.99; 95% CI, 1.17-3.47; P = .01) compared to White individuals. This exploratory study suggests there are racial disparities in dementia severity, functional impairment, and neuropsychiatric symptoms. Future work must address racial disparities and their underlying determinants as well as the lack of representation of racially minoritized individuals in nationally representative dementia registries.

Determinants of suicidal behavior in dementia: A Swedish national register-based study.

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.

A new one-stop interdisciplinary cognitive clinic model tackles rural health inequality and halves the time to diagnosis: Benchmarked against a national dementia registry.

Unequal access to cognitive assessments is a major barrier to timely diagnosis, especially for those living in rural or remote areas. 'One-stop' cognitive clinic models are a proposed solution, but few such clinics exist. We evaluate the implementation of a new one-stop State-wide clinic model in Tasmania, Australia, where 27% of people live in rural/remote areas. A novel single-visit protocol has been developed, comprising interdisciplinary medical and cognitive assessments, research participation, consensus diagnosis and management plan. A cross-sectional evaluation was undertaken using the RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework and results benchmarked against the national Australian Dementia Network Registry. Over the first 52 consecutive weekly clinics: Reach: 130 adults were assessed (mean age [SD] 70.12years [10.31]; 59.2% female) with 40 (36.8%) from rural/remote areas. 98.5% (128/130) received a same-day diagnosis: 30.1% (n=40) Subjective Cognitive Decline, 35.4% (46) Mild Cognitive Impairment, 33.1% (43) dementia and one case inconclusive. Adoption: 22.9% (156) of General Practitioners referred patients. Nearly all 'ideal' diagnostic clinical practices were met and >90% of surveyed patients reported 'good/very good' clinic experience. The wait from referral to diagnosis was 2months shorter than other national Registry clinics (78 vs. 133days). This 'one-stop' model provides an interdisciplinary consensus cognitive diagnosis quickly and is well accepted; this may reduce health inequities especially for people living in rural/remote areas. This cognitive clinic model may be of relevance to other centres worldwide and also provides a rich data source for research studies.

Comparison of caregiver burden between dementia with Lewy bodies and Alzheimer's disease.

Caring for patients with dementia with Lewy bodies (DLB) would be more stressful for their caregivers than those with Alzheimer's disease (AD). In this study, we compared levels of caregiver burden and the possible influential factors on the caregiver burden between DLB and AD. Ninety-three DLB patients and 500 AD patients were selected from the Kumamoto University Dementia Registry. Caregiver burden, neuropsychiatric symptoms, basic activities of daily living (BADL) and instrumental activities of daily living (IADL) were assessed by the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI), the Neuropsychiatric Inventory (NPI), the Physical Self-Maintenance Scale (PSMS), and the Lawton IADL scale, respectively. Despite the comparable Mini-Mental State Examination score, the J-ZBI score was significantly higher in the DLB group than the AD group (P = 0.012). A stepwise multiple regression analysis revealed that IADL score (β = -0.23, P = 0.049), PSMS score (β = -0.31, P = 0.010), disinhibition (β = 0.22, P = 0.008), and anxiety (β = 0.19, P = 0.027) were significantly associated with J-ZBI score in DLB. In AD, caregiver's relationship with patient (child) (β = 0.104, P = 0.005), caregiver's gender (female) (β = 0.106, P = 0.004), IADL score (β = -0.237, P < 0.001), irritability (β = 0.183, P < 0.001), apathy (β = 0.132, P = 0.001), agitation (β = 0.118, P = 0.007), and aberrant motor behaviour (β = 0.107, P = 0.010) were associated with caregiver burden. Caring for DLB patients caused a higher degree of caregiver burden than AD patients in the same level of cognitive decline. The factors responsible for the caregiver's burden were different between DLB and AD. The caregiver burden for DLB patients was associated with the disability of basic ADL, IADL impairment, anxiety and disinhibition.

Cognitive impairment and depressive symptoms in severe COVID‐19 elderly survivors: Preliminary results from 1‐year follow‐up assessment

AbstractBackgroundStudies have pointed towards the presence of neuropsychiatric sequelae after COVID‐19 infection, yet in the midst of the biggest health threat of this generation there are relatively few long‐term studies which have endeavored to identify such complications, known to have a negative impact on quality of life. In this context, this study aims to identify cognitive impairment (CI) and depressive symptoms in severe COVID‐19 elderly survivors, 1‐year after hospital discharge and also to analyse the association between CI and depressive symptoms.MethodThis study is part of the longitudinal MAPA project still ongoing at a University Hospital in Porto, Portugal. Patients with &gt;60 y.o., admitted into Intensive Care Medicine Department (ICMD), due to COVID‐19 (1st wave), were included. Exclusion criteria were: ICMD length of stay ≤24h, terminal illness, major auditory loss or inability to communicate at the follow‐up assessment. Participants were evaluated 1‐year after hospital discharge, with a research protocol, which includes Patient Health Questionnaire (PHQ‐9; depressive symptoms) and Six Item Cognitive Impairment Test (6CIT; CI).ResultThirty‐eight patients were included (median age = 71years). Mostly were male (66%), married (66%) and with low education (58% = 0‐4years). About 53% had previous psychiatric history (none had clinical registry of CI or dementia). Most patients (71%) needed deep sedation and invasive mechanical ventilation (71%). CI and depressive symptoms were observed in 18.4% of the sample, for both. Patients with depression had more CI (42.9%vs12.9%), however this difference was not statistically significant.ConclusionThese findings showed that an important proportion of severe COVID‐19 elderly survivors suffers from depressive symptoms and CI, 1‐year post‐discharge, which are in line with other studies. These results underline the need to better clarify the long‐term relationship between depression and CI in severe COVID‐19 survivors.

Five year dementia registry in Thailand: Regional distribution, etiologies, and outcome of dementia

AbstractBackgroundThere is a lack of epidemiological knowledge about whether individuals with dementia receive the same quality of diagnostics and treatment.MethodWe explored the ICD10 National Health Security Office (NHSO) in‐patient record of dementia in Thailand. We analyzed the prevalence, etiologies, regional distribution, and outcome of dementia in Thailand during 2015‐2019.We reviewed a cross‐sectional cohort study based on data from the NHSO.ResultStudied in‐patients diagnosed with dementia between 2015 and 2019 (n = 29,895; 40,981 visits) 17,058(57.1%) were female. 3,665(12.3%); 11,638(38.9%); 8,845(29.6%); 1,814(6.1%); 1,418(4.7%); and 2,515(8.4%) were in the northern, central, northeast, eastern, western, and southern part of Thailand respectively. Among 29,895 dementia cases, 15.4%, 18.7%, 20.2%, 24.1%, and 21.6% were prevalence cases in 2015, 2016, 2017, 2018, and 2019 (registered up to 30th September where was the end of fiscal year) respectively. 16.1% were single, 68.5% were married, 6.6% were divorced, and 8.9% had other marital status. 85% aged 65 and over. Mean age of these cohort was 75.42(sd = 11.97) years old. The etiologies registered as dementia were as followed: 9.3% had AD, 0.2% had bvFTD, 9.3% ha VaD, 2.1% had other degenerative dementia, 77.4% ha unspecified dementia, and 1.8% had cognitive impairment due to metabolic and physiological condition. During these 5 years, 59.3% were dead. Mean duration of admission were 9.84(sd = 19.84) days. Mean cost of expense during admission were 31,521.79(sd = 80,647.68) Baht.ConclusionThe dementia registry offers the surrogate clinical best practice and patient outcomes. The importance and significance in having dementia data cannot be undervalued.

Association between different dementia diagnosis and kidney function decline: A Swedish registry study

AbstractBackgroundPopulation studies have shown that chronic kidney disease(CKD) and CKD progression are associated with dementia, particularly Alzheimer’s dementia(AD) and vascular dementia(VD). However, the impact of different brain pathogenesis on these associations is not known.MethodObservational study of patients with recently diagnosed dementia disorders from the Swedish Dementia Registry(SveDem) 2007‐2018 linked with complete information of kidney function tests [estimated glomerular filtration rate(eGFR)] over time from the Stockholm CREAtinine Measurements(SCREAM) registry. The study exposure were different dementia diagnosis [AD, VD, mixed dementia, dementia with Lewy Bodies(DLB) and Parkinson’s disease dementia(PDD), frontotemporal dementia(FTD), unspecified dementia(UNS) and other dementia types]. The study outcome was CKD progression, defined as the composite of a sustained eGFR decline of&gt;30% from baseline, initiation of kidney replacement therapy or death attributed to kidney disease. We performed competing risk analyses where death from non‐renal causes was considered as competing events for CKD progression. Confounders included demographics, comorbidities, and baseline kidney function.ResultWe included 20,618 patients, of whom, 6,452(31%) had AD, 7,012(34%) had mixed dementia, 3,987(19%) had VD, 764(4%) had DLB or PDD, 312(2%) had FTD, and 2,091(10%) patients were diagnosed with unspecified or other dementia diagnoses. The mean age was 80 years (60%female). During median follow‐up time of 2.5 (IQR1.0‐4.5) years, 2,225(11%) events of CKD progression occurred, along with 8,684(42%) non‐renal deaths. After adjusting for confounders and accounting for competing risks, a higher risk of CKD progression compared to patients with AD was observed for patients with VD [sub‐HR, 95%CI 1.19;1.05‐1.34], mixed (1.13;1.02‐1.26), UNS or other dementia types (1.13;0.96‐1.32), while patients with DLB or PDD dementia had 46% lower risk of CKD progression (0.54;0.39‐0.76), and those with FTD showed no difference compared to AD (0.99;0.64‐1.51).ConclusionVD and mixed dementia (vs AD diagnosis) were associated with a higher risk of CKD progression, whereas DLB or PDD dementia were associated with lower risk of CKD progression. Since DLB and PDD dementia involve less and VD and mixed dementia more vascular pathology, this suggests that vascular mechanisms may play an important role in the brain‐kidney axis. Future studies are needed to explore this hypothesis.

Cognitive stimulation to improve cognitive functioning in people with dementia

Cognitive stimulation to improve cognitive functioning in people with dementia

Effect of mortality in cost-effectiveness modeling of disease-modifying treatment for Alzheimer's disease.

We examined (1) the magnitude of mortality attributed to Alzheimer's disease (AD), and (2) the effect of mortality in cost-effectiveness modeling of hypothetical disease-modifying treatment (DMT) in AD. Data were derived from Swedish Dementia Registry (N=39,308). Mortality was analyzed with survival analysis and multinomial logistic regression. A Markov microsimulation model was used to model the cost effectiveness of DMT using routine care as a comparator. Three scenarios were simulated: (1) indirect effect, (2) no effect on overall mortality, (3) indirect effect on AD-related mortality. Overall mortality increased with cognitive decline, age, male sex, number of medications used, and lower body mass index. Nearly all cause-specific mortality was associated with cognitive decline. DMT increased survival by 0.35 years in scenario 1 and 0.14 years in scenario 3. DMT with no mortality effect is the least cost effective. The results provide key mortality estimates and demonstrate influences on the cost effectiveness of DMT. We describe cause-specific mortality in relation to disease severity in Alzheimer's disease (AD).We model different assumptions of disease-modifying treatment (DMT) on AD survival.DMT was the least cost effective when assuming no effect on AD survival.Cost effectiveness is mainly influenced by the relative cost of staying in each disease state.