Background: Among the general public there is a deep fear of developing dementia, which has led to an increasing number of people “at risk” seeking ways (such as advance directives) to avoid undergoing progressive mental decline. The views of people with dementia are vital in obtaining a real answer to the question of how the disease affects people's lives and whether it actually involves the suffering that so many fear.

Method: A review of the international literature is provided on what is known about living through dementia from the patient's perspective.

Results: A total of 50 papers met the inclusion criteria. The findings of these reviewed papers give insight into the impact of dementia and the ways that those who have it deal with its effects by using different coping strategies. The literature on the perspective of the patient gives no solid support to the widespread assumption that dementia is necessarily a state of dreadful suffering. Although the impact of dementia and the experiences of loss resulting in multiple “negative” emotions cannot be denied, our findings also indicate that people do not undergo the disease passively and use both emotion-oriented and problem-oriented coping strategies to deal with its challenges. The experiences of living through dementia as told by the sufferers appear to yield a more subtle picture than the assumptions made by the general public.

Conclusion: The overview provides a good starting point for improving the adjustment of care to the experience and wishes of people with dementia.

Background: Different interview schedules and diagnostic criteria for dementia have contributed to differing incidence and prevalence rates.

Aim: This study aimed to examine the effect of different diagnostic criteria on the prevalence of dementia in the community.

Methods: Some 1000 subjects (> 65 years) were recruited in Kaniyambadi Block, Vellore, India, using a one-stage assessment procedure.

Results: The prevalence of dementia by Diagnostic and Statistical Manual IV standard, the Community Screening instrument for Dementia DF Score, the education adjusted 10/66 Dementia Research Group criteria, and the Geriatric Mental State was 0.8%, 6.2%, 10.6%, 63.2% respectively.

Conclusion: Differences in information, interview schedules, diagnostic criteria and settings contribute to variation in identification of people with dementia. Minor variations in criteria have a significant impact on diagnosis. The assessment of the clinical state is influenced by education, level of baseline function, impairment in current functioning, life style and demands on the person, tolerance of impairment and expectation by relatives and by differences between patients attending hospitals and those living in the community. The variation in rates demands a debate on the criteria for dementia in the community in general and for less literate populations in particular.

The choice of outcomes in clinical research should be influenced by a linkage between the targeted symptom or disorder and the outcome being measured, the clinical meaningfulness of the outcome, and the ability to measure the outcome accurately. Dementia, defined as a syndrome consisting of disorders that impair two or more distinct cognitive capacities, occur in clear consciousness, and begin in adulthood, presents unique challenges in the choice of appropriate outcomes for treatment trials.

Background: The rapid increase in the elderly population in Japan has triggered a debate on whether or not patients with dementia should be informed of their diagnosis. The purpose of the present study was to investigate the attitudes of people in a large city in Japan toward the disclosure of a diagnosis of dementia.

Methods: In Study 1, 2000 residents aged 40–64 and 5000 residents aged 65 and over were sampled randomly, and a structured questionnaire was sent to them by mail. In Study 2, we administered a structured interview-based questionnaire to 3949 randomly enrolled residents of Nagoya City aged 45 and over whose family member had been certified as needing long-term care.

Results: In Study 1, 79.8% of the younger respondents (n = 710) stated that they would prefer the disclosure of a hypothetical diagnosis of dementia, as did 75.5% of the older respondents (n = 2162). Furthermore, 85.1% (n = 749) of the younger respondents and 82.5% (n = 2181) of the older respondents stated that they would prefer that the patient be told his or her hypothetical diagnosis of dementia. In Study 2, in the case of care recipients without dementia, 68.3% (n = 650) of their family members preferred disclosure of a hypothetical diagnosis of dementia. Among the families of care recipients who had dementia, 58.4% (n = 301) of family members preferred disclosure.

Conclusions: The present survey of caregivers and non-caregivers in an urban city of Japan demonstrated that the desire for disclosure of a diagnosis of dementia is relatively high.

Background: The aim of the present study was to evaluate the validity, reliability and responsiveness of a Swedish translation of the Quality of Life in Late-Stage Dementia (QUALID) Scale.

Method: A total of 169 elderly residents at 19 dementia special care units in eight long-term care facilities in the Gothenburg city region participated in the study. Assessments were made by 107 proxy informants.

Results: Results showed satisfactory levels of internal consistency reliability (Cronbach's α coefficients 0.74), acceptable inter-rater reliability between informants (0.69), and high test-retest reliability (0.86). As hypothesized, QUALID scores were also associated with those from other quality-of-life (QoL) indices (criterion validity), as well as with use of psychoactive drugs, and with tests of cognitive impairment (clinical validity). The responsiveness of the questionnaire was also acceptable.

Conclusions: As important clinical decisions may derive from perceived QoL effects, it is vital that the QoL data be reliable, valid and sensitive to change. Our evaluations of the psychometric properties of the Swedish QUALID indicate that it satisfactorily meets the need for an instrument to assess QoL in late-stage dementia in Sweden, in a wide range of settings and applications.

Background: Depression and anxiety is prevalent among patients with dementia but the extent to which these conditions are treated with antidepressants has not previously been investigated.

Methods: Nationwide register-based data in Denmark were used to identify all patients diagnosed with dementia or osteoarthritis at hospital admission or at first outpatient contact during the period 1995–2000. Rates of subsequent purchase of antidepressants from pharmacies were then calculated. Further, the rate of antidepressant use for patients with dementia was compared with the rate in a gender-, age-, and calendar-matched sample of the general population.

Results: In total, 24,137 patients with a main diagnosis of dementia and 100,378 patients with a main first diagnosis of osteoarthritis were incorporated in the study. A total of 43.2% of patients with dementia received antidepressants during follow-up compared to 16.0% of patients with osteoarthritis. Among patients with a diagnosis of dementia, the rate of subsequently purchasing antidepressants was 4.17 times higher (95% CI = 4.05–4.29) than that of patients with a first diagnosis of osteoarthritis, and 8.85 times higher (95% CI = 8.68–9.03) than that of a gender-, age- and calendar-matched sample of the general population. The rate was increased in all subgroups of patients regardless of gender, age, socio-economic group and time since diagnosis.

Conclusions: The findings challenge the widely held contention that depression and anxiety in patients with dementia is underdiagnosed and undertreated in clinical practice.

Background: Referrals to clinical services of people living in severe domestic squalor are not uncommon. It is timely to review literature concerning and discussing such cases.

Method: Using Medline, Psychinfo, Embase, CINAHL and reference lists from relevant publications, literature referring to over 1100 cases was identified and then reviewed.

Results: Half of those described as living in severe squalor are elderly. Outcomes of intervention are often poor. People living in severe squalor are most commonly diagnosed as having dementia, alcoholism or schizophrenia, though personality problems are evident in a high proportion. There is evidence to suggest that neglect of hygiene and of attention to cleanliness of accommodation may be largely attributable to frontal lobe changes. The review also revealed a second body of literature, not often cited in papers focussed on unclean living conditions and published in psychiatric or medical journals, that concludes that hoarding is most commonly due to obsessive-compulsive disorder (OCD). Accumulation of rubbish is described in over half of the case reports on severe domestic squalor, but it is suggested that this should only be called hoarding if it results from purposeful collection of items. Lack of impulse control may contribute to collecting behavior, resulting in reduction in living space if there is also a failure to discard.

Conclusions: There is a need for further studies, using standardized ratings of living conditions, investigating and trying to understand the complex interplay of triggers and vulnerabilities, exploring how best to intervene and examining outcomes of interventions.

Background: Old age psychiatry as a clinical specialty emerged in the 1970s and modern, open-access multidisciplinary services started in the mid-1980s in South London. There are few accounts of referrals to old age psychiatry services and no quantitative accounts of the referral patterns to such teams. We report on the first 10,000 patients newly referred to the first such service in the world.

Methods: Observational study on routinely gathered data on age, gender, referral source, discipline of team member involved, diagnosis and duration of contact. Data validation was by iterative feedback to clinicians.

Results: Ten thousand patients were referred between December 1983 and March 2000. Missing data rates were low. The overall referral rate was 21.0 per 1000 population over 65 per annum, with the highest rate in those 85+ years old, in whom there was a marked rise over time. The rise in referral rate compensated for a decline in the population over 65 so that the numbers of referrals rose. Although there was a rise in the rate of referral of people with an organic diagnosis over time, this was not statistically significant. Organic patients constituted 50–60% of referrals but had shorter contact times than functional ones. Cause for concern included a low rate of referral from care homes, and a high proportion of possibly inappropriate referrals from medical and general psychiatry services. We were pleased to see no excess of such referrals from open-access sources, confirming earlier work.

Conclusions: Descriptive data on referrals and workload of the first open-access multidisciplinary old age psychiatry service have generated cause for both celebration and concern.

Background: The Cognitive Abilities Screening Instrument (CASI) consists of items which are designed to measure the nine domains of cognitive ability. Its total score is used clinically to represent the overall underlying cognitive ability of the patient. This study aimed to evaluate the justification of the uses of the all-domain-total-score as an overall cognitive measure and the domain scores as measures of designated individual cognitive ability.

Methods: To justify the use of total score of all the items as an overall measure of cognitive ability, a second-order confirmatory factor analysis was performed to examine whether the items in CASI contributed significantly to a common underlying construct. The uses of domain scores were also examined by inspecting the loadings of the items on their designated domains. The CASI data from 608 patients, 68 normal and 540 with Alzheimer's disease, were analyzed.

Results The goodness-of-fit indices for the second-order factor model were as follows: CFI was 0.912 for WLSMV and 0.977 for WLSM; TLI and RMSEA values were 0.975 and 0.090 respectively. The loadings of the items on the common underlying construct are all salient (>0.3). The loadings of all but the long-term memory items on their respective subdomains were also salient.

Conclusions: The items of the CASI C-2.0 were useful not only in profiling the correlated cognitive domain scores, but also in forming an overall measure of the underlying cognitive ability of the patients.

Background: This is a community-based longitudinal epidemiological comparative study of elderly African Americans in Indianapolis and elderly Yoruba in Ibadan, Nigeria.

Method: A two-stage study was designed in which community-based individuals were first screened using the Community Screening Interview for Dementia. The second stage was a full clinical assessment, which included use of the Geriatric Depression Scale, of a smaller sub-sample of individuals selected on the basis of their performance in the screening interview. Prevalence of depression was estimated using sampling weights according to the sampling stratification scheme for clinical assessment.

Results: Some 2627 individuals were evaluated at the first stage in Indianapolis and 2806 in Ibadan. All were aged 69 years and over. Of these, 451 (17.2%) underwent clinical assessment in Indianapolis, while 605 (21.6%) were assessed in Ibadan. The prevalence estimates of both mild and severe depression were similar for the two sites (p = 0.1273 and p = 0.7093): 12.3% (mild depression) and 2.2% (severe depression) in Indianapolis and 19.8% and 1.6% respectively in Ibadan. Some differences were identified in association with demographic characteristics; for example, Ibadan men had a significantly higher prevalence of mild depression than Indianapolis men (p < 0.0001). Poor cognitive performance was associated with significantly higher rates of depression in Yoruba (p = 0.0039).

Conclusion: Prevalence of depression was similar for elderly African Americans and Yoruba despite considerable socioeconomic and cultural differences between these populations.

Background: Late-life depression has been associated with vascular diseases and with increases in circulating cytokines and cell adhesion molecules in the prefrontal cortex. We hypothesized that soluble intercellular adhesion molecule-1 (sICAM-1) and soluble vascular cell adhesion molecule-1 (sVCAM-1) would be increased in late-life major depression.

Methods: Serum levels of sICAM-1 and sVCAM-1 were measured in subjects over 60 with major depression (N = 23), subsyndromal depression (N = 20) and controls (N = 25). Depression severity was assessed using the Montgomery-Åsberg (MDRS) and Geriatric Depression (GDS) rating scales.

Results: There was no significant increase in sICAM-1 (p = 0.240) or sVCAM-1 (p = 0.600) in depression nor was there any correlation of either molecule with depression severity. Adjusting for differences in cognitive impairment did not alter these findings. There was also no difference between subjects with an early onset of depression (before 60) and those with late-onset depression.

Conclusions: These findings do not provide evidence that previously reported increases in serum cytokines in depression are due to peripheral vascular disease. Although we assessed subjects for vascular diseases it is possible that subtle but important differences between groups may still have been present and may have contributed to our negative findings.

Our results suggest central nervous system mechanisms, such as related to HPA axis activation, may be responsible for the enhanced inflammatory response in depression.

Neuropsychiatric symptoms (NPS) are central features of dementia and an important treatment target. They should be assessed in future studies of emerging dementia therapies, using appropriate measures matched to the purpose of each study. Several significant issues remain regarding (1) the classification of these symptoms into syndromes, and (2) the development of better clinical measures for their quantification. In particular, effort should be directed at assessing their evolution over shorter time periods, and at using more objective methods in their measurement, such as actigraphy. These issues can be solved with nosologic study and other advances that could be brought about quickly, if appropriate time and effort are allocated. Empirical characterization of clinically meaningful change in NPS – by examining their relationship with dementia care burden, disability, quality of life, caregiver distress, and resource utilization – would be an important advance.

Background: The development of effective medication for the treatment of Alzheimer's disease led to an expansion in the use of memory clinics ther clinic-based services for the delivery and monitoring of the drugs. In contrast, there is an increased emphasis on providing home and community based service delivery for a range of illnesses including dementia.

Methods: This paper reports the findings of an evaluation study comparing a clinic-based and a community service. A convenience sample of 10 service users and carer dyads took part in in-depth qualitative interviews. Service users were diagnosed with mild to moderate dementia of Alzheimer's type. Interviews were recorded, transcribed and subsequently analyzed using template analysis.

Results: Service users and carers were satisfied with both services, with determinants of satisfaction differing between the two services. Issues relating to the location and spatial design of services, comfort, familiarity, communication with staff, and ease of use are highlighted as important determinants of satisfaction amongst service users and their carers.

Conclusion: This study has implications for person-centred care practices in service delivery and for the future design of mental health services for people with dementia.

Background: The impact of spousal bereavement on mental health varies among the widowed. More information is needed on factors influencing bereavement outcome.

Method: We conducted a cross-sectional study on a sample of 216 widowed individuals. Initial non-response was high, with only 8% of all approached persons participating in the study. The influence of demographic and psychosocial predictors on four general outcome measures (depression, anxiety, somatization, and quality of life) and one loss-related outcome (complicated grief) was studied by means of backward linear regression analysis. Further analyses were performed to explore the possibility of a buffer effect.

Results: Depressive symptomatology was best predicted by: age, duration of widowhood, perceived non-supportiveness, physical disorders, and mastery. The other outcome measures were predicted by the same predictors supplemented by gender and education. Mastery interacted with the number of physical disorders while perceived social support interacted with duration of widowhood and age.

Conclusions: Enhancement of mastery should probably be one of the components of effective support for widowed individuals most vulnerable to psychiatric complications. The widowed could furthermore benefit from social support. Obviously, these suggestions need to be further examined in longitudinal research with more representative samples.

Background: The elderly are vulnerable to illness and particularly to psychiatric illness. Many mentally ill elderly patients end up on non-psychiatric wards owing to somatization of their illnesses. Even for these patients, a psychiatric diagnosis may not be made. The literature on the elderly in Uganda is very scanty. This study aims to establish the prevalence and factors associated with psychiatric disorders among elderly patients admitted to non-psychiatric wards.

Methods: We carried out a descriptive cross-sectional study of 127 consenting elderly patients. They were administered a standardized questionnaire comprising the Self Reporting Questionnaire 25, the Mini-mental State Examination and the Structured Clinical Interview for the Diagnostic and Statistical Manual IV. Study variables included socio-demographic characteristics, physical illnesses, psychiatric disorders and the treatment given.

Results: The rate of psychiatric morbidity was 48%. The sex ratio was 1:1; however, women had a higher rate of psychiatric illness than men, 54.6% and 41.3% respectively. Being widowed or separated and having cancer were associated with SRQ > 5, p = 0.02 and p = 0.04 respectively. Depressive disorders were the most common at 25.2% and were more common in women. Increasing age was associated with dementia (p < 0.00).

Conclusion: There is a high rate of psychiatric morbidity among the elderly in Uganda. Particular attention should be given to the psychological health of elderly people admitted to general hospitals.

Background: Very few studies have approached the issue of persistent vegetative state (PVS) within the elderly population. This study aims to assess the prevalence, determinants and prognosis of elderly patients with PVS admitted to a long-term geriatric facility.

Methods: We conducted a cohort study in the setting of a Skilled Geriatric Nursing Department. All patients admitted during a 17-month period (N = 88) were included and tested for a diagnosis of PVS according to the Disability Rating Scale (DRS).

Results: A clinical diagnosis of PVS was given to 15% of patients upon admission, whereas the DRS diagnosed 30.5% of patients as having PVS. During the study period, 12 out of 31 patients with PVS died, with a median survival of 127 days (range: 1–517 days).

Conclusion: Our study suggests that PVS is an advanced stage in the natural history of dementia in the elderly. The low proportion of patients with PVS recognized as having this disorder upon admission suggests a low awareness among hospital personnel. Further studies of the prevalence and determinants of PVS in the severely disabled elderly population are warranted.

Global measures used in treatment trials in dementia encompass two distinct categories: (1) clinician's interview-based global severity scales, and (2) clinician's interview-based global change scales.

The global severity scales that have been used include: the Clinical Dementia Rating (CDR) and the related CDR-sum of boxes (CDR-SB), the Global Deterioration Scale (GDS), and the Functional Assessment Staging (FAST) procedure. The global severity scales are clearly useful in subject categorization in treatment trials, in part because they are relatively free of many of the sociocultural biases inherent in mental status and psychometric descriptors. Global severity scales can also be used to demonstrate therapeutic efficacy in terms of the general progression of the dementia process. These measures have also proven to be useful in sensitively assessing pharmacotherapeutic effects in Alzheimer's disease (AD) treatment trials. For example, in pivotal trials: (1) in Mild to Moderate AD, the GDS has shown significant change in response to medication, whereas the results on the Mini-mental State Examination (MMSE) were not significant, and (2) in Moderate to Severe AD, the FAST has shown significant pharmacotherapeutic efficacy, whereas the results using the MMSE were not significant.

The global change scales employed in dementia trials differ widely in assessment methodology. Clinical Global Impressions of Change (CGIC) scales do not have defined methodologies, whereas Clinician's Interview-Based Impression of Change Plus Caregiver Input (CIBIC-Plus) scales are much more elaborate. The CIBIC-Plus procedures require an independent clinician assessment and can provide independent, comprehensive evidence of therapeutic efficacy. The CIBIC-Plus procedure may also be useful in sensitively assessing efficacy in future prevention trials, for example in subjects with Subjective Cognitive Impairment. For Mild Cognitive Impairment (MCI), global severity scales already appear to be one modality for the sensitive assessment of change. The CIBIC-Plus procedures might also productively be applied in future MCI therapeutic trials.

Background: Repeat cognitive testing is an essential diagnostic strategy to measure changes in cognition over time when following people with memory problems. Alternate forms may avert practice effects that can mimic improvements in cognition. We evaluated alternate forms of verbal fluency and logical memory (paragraph recall) tasks to evaluate their equivalence for clinical use.

Methods: Participants with mild cognitive impairment (MCI) and dementia were recruited from five outpatient memory clinics and one nursing home. Participants with normal cognition (NC) were recruited from family members or friends. Verbal fluency categories of animals, cities & towns, fruits & vegetables and first names were used. Scores were recorded for 0–30 seconds, 31–60 seconds and errors. For the logical memory task, participants were read one of three different paragraphs and then were asked to recall the story. Immediate recall and delayed recall scores were recorded. The Standardized Mini-mental State Examination, the AB Cognitive Screen and the 15-point Geriatric Depression Scale were administered as part of the assessment. Analyses were performed using means, frequency distributions, t-tests, receiver-operating characteristic curves and effect sizes.

Results: There were 46 NC participants, 45 with MCI and 55 with dementia. For verbal fluency, the mean number of animals, cities & towns, names or fruits & vegetables named in 60 seconds did not differ significantly within each cognitive group. First names was an easier category than the others: NC named 16.9–22.3 items, MCI named 11.6–14.4 items and dementia named 8.1–11.4 items. The mean number of items immediately recalled in logical memory was not significantly different for the three paragraphs. The verbal fluency task (in 60 seconds) and logical memory immediate recall were highly sensitive and specific to differences between NC and MCI (areas under the curves 0.87 and 0.76, respectively).

Conclusions: Alternate forms allow serial testing without learning bias. Verbal fluency and logical memory tasks are sensitive to early cognitive changes.

Background: This study examines predictors of loneliness among low-income older adults through a framework named MODEL (Model of Depression and Loneliness), which we developed to address the need for a comprehensive and intervention-oriented theory of loneliness in old age. The framework is rooted in a cognitive-behavioral theory that conceptualizes behaviors as resulting from an interaction of cognitive processes and environmental events.

Methods: 161 residents of five independent-living buildings for low-income older adults in Maryland were interviewed individually. The assessments were based on the theoretical framework, MODEL, which describes the influences that environmental resources, health, and psychological factors have on loneliness and depression.

Results: MODEL explained a large percentage of the variance of both loneliness and depressed affect. Of all the barriers examined in the present study, our findings suggest that psychosocial factors/barriers have the strongest influence in the etiology of loneliness.

Conclusion: In this population of low-income older persons, the importance of new contacts, mobility, and financial resources in predicting loneliness suggests that preventive social services should target these factors in developing opportunities for socialization.