Estimating the burden of early onset dementia; systematic review of disease prevalence.

Dementia is more common in older age but a number of people develop symptoms at a younger age and are said to have early onset dementia (EOD). Those with EOD face different challenges to those with onset later in life. It has been difficult to quantify this disease burden. This is a systematic review of papers reporting on the prevalence of EOD. A search of Medline and Embase was performed. This was followed by a hand search of the references of these papers. Eleven suitable studies were included. All of the data was from more economically developed countries. The studies were heterogeneous in their design hindering direct comparison. The majority of the papers looked at all types of dementia although many gave a breakdown of the prevalence of different subgroups. A variety of diagnostic criteria was employed. Figures of 38 to 260 per 100,000 are quoted by papers looking at various different types of dementia together with an onset of between 30 and 64 or up to 420 per 100,000 for those aged 55-64. Prevalence rises as age approaches 65. Epidemiological data for prevalence rates for EOD are sparse. EOD remains a rare condition with low case numbers. Assimilation and comparison of results from existing studies is difficult due to methodological heterogeneity. Cross-national standardization of methodology should be a priority for future research in this area.

Progression of Alzheimer disease in Europe: data from the European ICTUS study.

The clinical progression of Alzheimer disease (AD) was studied in European subjects under treatment with AChE inhibitors (AChE-I) in relation to geographical location over a 2-years period. One thousand three hundred and six subjects from 11 European countries were clustered into 3 regions (North, South, West) and investigated with biannual follow-up over 2 years. Primary outcomes were cognitive, functional and behavioral measures. Caregiver burden, hospital admission and admission to nursing home were also recorded. Participant cognitive function declined non-linearly over time (MMSE: -1.5 pts/first year, -2.5 pts/second year; ADAScog: + 3.5 pts/first year, + 4.8 pts/second year), while the progression of behavioral disturbances (NPI scale) was linear. Neither scale showed regional differences, and progression of the disease was similar across Europe despite different health care systems. Functional decline (ADL, IADL) tended to progress more rapidly in Southern Europe (p=0.09), while progression of caregiver burden (Zarit Burden Interview) was most rapid in Northern Europe (5.6 pts/y, p=0.04). Incidences of hospital admission (10.44, 95%CI: 8.13-12.75, p < 0.001) and admission to nursing home (2.97, 95%CI: 1.83-4.11, p < 0.001) were lowest in Southern Europe. In general cognitive and functional decline was slower than in former cohorts. European geographical location reflecting differences in culture and in health care system does not impact on the progression of AD but does influence the management of AD subjects and caregiver burden.

Epidemiological studies of cognitive impairment and dementia across Eastern and Middle European countries (epidemiology of dementia in Eastern and Middle European Countries).

OBJECTIVE: To determine the availability and the consistency of prevalence findings of epidemiological studies on cognitive impairment and dementia conducted in Eastern and Middle Europe. METHODS: We adopted a stepwise multimethod study approach consisting of iterative literature searches for epidemiological articles published between 1990 and 2006 and subsequent data analyses of published material, reanalyses of existing accessible epidemiological data sets and expert inquiries in Eastern and Middle European countries. Systematic computer-assisted searches used the keywords: "dementia", "Alzheimer", "cognitive impairment", "incidence", "prevalence", "epidemiology" in combination with the name of the relevant countries or "Europe" in English and Polish language. We supplemented the literature search with a review of the references in the articles that were identified during the initial search. RESULTS: We were able to find few regional and country-specific epidemiological studies of various kinds (population-based, cohort, cross-sectional studies) and conducted on different restricted population groups of patients (from neurological units, out-patients units, residential homes). No studies were identified from most of the countries taken under consideration and the ones we found were characterized by an immense diversity with a considerable degree of clinical and methodological variations. The few studies that there are suggest prevalence rates of dementia in Eastern Europe similar to those in Western Europe. CONCLUSIONS: There is strong need for epidemiological studies in Eastern and Middle Europe, as well as for greater coordination and standardization of methods to improve the quality and comparability of epidemiological data to determine the prevalences' rates of dementia in all the EU countries.

Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study.

OBJECTIVES: This study aimed to estimate the costs of formal and informal care of patients with Alzheimer's disease, to compare care costs across European countries and identify potential differences in cost patterns between countries and regions. SETTING: The ICTUS study is a prospective, naturalistic observational study conducted in specialised memory clinics in 12 European countries. In total, 1385 patients diagnosed with Alzheimer's disease were enrolled at baseline. All subjects had a reliable informant (primary caregiver) and informed consent was obtained from patients or their primary caregiver. MAIN OUTCOME MEASURES: Resource utilization data was captured with the RUD Lite (Resource Utilization in Dementia) instrument and caregiver burden with the Zarit Burden Interview (ZBI). Patient disease severity was measured with the Mini-Mental State Examination (MMSE), Alzheimer's Disease Assessment Scale-Cognitive subscale (ADAS-cog), Katz´ index (PADL), Instrumental activities of daily living (IADL) scale and Neuropsychiatric inventory (NPI). RESULTS: The mean annual cost of care per patient was estimated to €7,820 (95% CI: €7,194-€8,446), whereof 54% were costs of informal care, 16% direct medical costs and 30% community care costs. There were substantial differences in total resource utilization and also in the balance between formal and informal care between Northern, Western and Southern Europe. PADL scores were strongly associated with formal care costs while IADL scores correlated strongly with informal care costs. CONCLUSIONS: Costs of Alzheimer's disease are high across European countries. Activities of daily living is an important determinant of care costs. Formal care service use is lower and informal care higher in Southern Europe compared to Western and Northern Europe. Differences in resource utilization patterns are important to consider in international studies of dementia care costs as well as in economic evaluations of new treatments for dementia.

The ICTUS Study: A Prospective longitudinal observational study of 1,380 AD patients in Europe. Study design and baseline characteristics of the cohort.

The long-term objective of the ICTUS study is to identify milestones in Alzheimer's disease (AD) progression and to develop a model to predict disease course in individual AD patients in Europe. The secondary objectives are to describe the patterns of prescribing, and the socioeconomic impact of AD in Europe. Between 2003 and 2005 1,380 patients with probable AD were recruited in specialised (secondary care) clinics in 12 European countries. Their mean age was 76 years and they had a mean of 8.0 +/- (SD) 4.6 years of education. Thirty-five percent were male. The mean MMSE score was 20.4 +/- (SD) 4.0. Forty-three percent had very mild dementia (CDR 0.5) and 44% had mild dementia (CDR 1). All patients completed baseline evaluation and biannual follow-up is ongoing. The goals of the current study are to describe the specific methods for recruitment in this crosscultural setting and the characteristics of the inception ICTUS cohort, including clinical features, co-morbidity, neuropsychological performance, neuropsychiatric symptoms, functional impairment and social burden.

[Clinical evaluation of dementia in a cohort of 358 patients with the French version of the Clinical Dementia Rating (CDR) scale]. / Evaluation clinique de la démence d'une cohorte de 358 patients par la version française de l'échelle CDR.

PURPOSE: A reliable global rating of dementia severity in Alzheimer's disease is critical both in clinical and research practice. In this paper, we present the results of the assessment of a cohort of 358 patients using the French version of the Clinical Dementia Rating Scale (CDR). METHODS: 358 patients from a multicentric cohort were assessed in a comprehensive way: cognitive (Mini Mental Status Examination), functional (Activities of Daily Living), behavioural (Neuro Psychiatric Inventory) and global (Global Dementia Scale). CDR staging was performed after both patient and caregiver interview. RESULTS: 27.6% of the patient had a CDR 0.5 (questionable dementia), 43% CDR 1 (mild dementia), 24.9% CDR 2 (moderate dementia) and 4.5% CDR 3 (severe dementia). All the rating scales were highly correlated with CDR stages (p < 0.0001). The CDR was also correlated with the Global Dementia Scale (p < 0.0001), but a perfect overlap of individual stages was not achieved. CONCLUSIONS: CDR staging takes into account the major domains of dementia assessment: cognition, function and behaviour. Staging Alzheimer's patients as CDR 0.5 arises the issue of the relationship between very mild dementia and Mild Cognitive Impairment. This study represents the first step of the CDR (French version) validation which is underway in this cohort.

A nutritional education program could prevent weight loss and slow cognitive decline in Alzheimer's disease.

BACKGROUND: Weight loss is a common problem in patients with Alzheimer's Disease (AD). It is a predictive factor of mortality and it decreases patients' and caregivers' quality of life. OBJECTIVE: To determine if a nutritional education program can prevent weight loss in AD patients. SUBJECTS: 151 AD patients and their caregivers were enrolled to follow the intervention and 74 AD patients and their caregivers constituted a control group. METHOD: Caregivers in the intervention group followed 9 nutritional sessions of one hour each, over one year. Caregivers in the control group didn't follow any sessions but were offered advice provided in a normal follow-up. Patients weight, nutritional state, cognitive function, autonomy, mood, behaviour disorders at baseline and at 6- and 12-month follow-up. Caregivers burden, nutritional and AD knowledge at the baseline and at the 12-month follow-up. RESULTS: During the year follow-up, the mean weight increased in the intervention group (0.7+/-3.6 kg) whereas it decreased in the control group (-0.7+/-5.4 kg) (p<0.05). The nutritional status (MNA) was maintained in the intervention group (0.3+/-2.6) whereas it decreased significantly in the control group (-1.0+/-3.4) (p<0.005). After adjustment for baseline differences between the two groups (caregiver age, nutritional state, eating behaviour disorders, depression), the weight change between the two groups was not significant (0.6+/-0.4 kg vs. -0.6+/-0. 6 kg respectively in intervention group and control group). However, the percentage of patients with significant weight loss is decreased. The MMSE change became significant between the two groups: -2.3+/-0.3 vs. -3.4+/-0.4 respectively in intervention group and control group (p<0.05). CONCLUSIONS: These results suggest that a nutritional educational program intended for caregivers of AD patients could have a positive effect on patients weight and cognitive function.