A comparison between older persons with down syndrome and a control group: clinical characteristics, functional status and sensorimotor function

The increase in life expectancy within the general population has resulted in an increasing number of elderly adults with intellectual disability, and this is reflected in the increased life expectancy in persons with Down syndrome, currently about 56 years. The aim of this study was to study the clinical characteristics, the functional status and sensori-motor function of 10 older persons with Down syndrome (mean age 59 years), 13 younger persons with Down syndrome (mean age 44 years) and compare them with 38 adults with intellectual disability without Down syndrome and a control group of people without intellectual disability. All the persons with Down syndrome and intellectual disability resided in two residential living centres in Israel, while the 31 older persons without intellectual disability (mean age 75 years), who served as the control group, lived in an independent living facility. The study considered demographic data, medical backgrounds, physical and functional tests. The results showed that the older persons with Down syndrome in the study were more obese, shorter and had more medical problems than both the older persons with intellectual disability and the control group. The functional performance of the older adults with Down syndrome was more impaired in comparison with both other groups. It is postulated that their slower responses may be explained by a less physically active lifestyle, that may accelerate the onset of disease, resulting in symptoms associated with aging that are detrimental to health.     

The impact of health status on work, symptoms, and functional outcomes in severe mental illness

This study evaluated the relationships between self-ratings of physical role functioning and general health, two components of the MOS SF-36, and a variety of demographic, quality of life, clinical, functional, and attitudinal variables in a cohort of adults living with severe and persistent mental illness (SPMI). We hypothesized that poorer self-perceptions of physical functioning and general health would be significantly related to more severe symptoms and poorer functioning and quality of life. Study subjects were 218 adults with SPMI enrolled in a randomized controlled trial comparing two vocational interventions for persons who were unemployed. Hierarchical regression analysis was used to determine whether psychiatric symptoms, poorer self-perceptions of role limitations due to physical health problems and overall general health independently contributed to more severe symptoms and poorer functioning and quality of life. Psychiatric symptoms were inversely related to size of social network and satisfaction with safety. Increased role limitations were associated with reduced medication compliance, general life satisfaction, and satisfaction with health, daily activities, and safety. Reduced general health was significantly associated with reduced work motivation, self-esteem, current inability to work, self-report of functioning, and almost all subjective life satisfaction domains. Within this group of people with severe mental illness, psychiatric symptoms were minimally associated with outcomes. Physical role limitations contributed more, and an integrated global measure of overall health perception was most important. If we are to help persons with severe mental illness maximize their quality of life and functioning, our clinical interventions should employ an approach that appreciates and recognizes the importance of the patients' experience of a holistic and integrated experience of health.     

The effects of Snoezelen (multi-sensory behavior therapy) and psychiatric care on agitation, apathy, and activities of daily living in dementia patients on a short term geriatric psychiatric inpatient unit

A randomized, controlled, single-blinded, between group study of 24 participants with moderate to severe dementia was conducted on a geriatric psychiatric unit. All participants received pharmacological therapy, occupational therapy, structured hospital environment, and were randomized to receive multi sensory behavior therapy (MSBT) or a structured activity session. Greater independence in activities of daily living (ADLs) was observed for the group treated with MSBT and standard psychiatric inpatient care on the Katz Index of Activities of Daily Living (KI-ADL; P = 0.05) than standard psychiatric inpatient care alone. The combination treatment of MSBT and standard psychiatric care also reduced agitation and apathy greater than standard psychiatric inpatient care alone as measured with the Pittsburgh Agitation Scale and the Scale for the Assessment of Negative Symptoms in Alzheimer's Disease (P = 0.05). Multiple regression analysis predicted that within the multi-sensory group, activities of daily living (KI-ADL) increased as apathy and agitation reduced (R2 = 0.42; p = 0.03). These data suggest that utilizing MSBT with standard psychiatric inpatient care may reduce apathy and agitation and additionally improve activities of daily living in hospitalized people with moderate to severe dementia more than standard care alone.     

Validity and reliability of the Portuguese version of the Epilepsy Medication Treatment Complexity Index for Brazil

We evaluated the reliability and validity of a Brazilian-Portuguese version of the Epilepsy Medication Treatment Complexity Index (EMTCI). Interrater reliability was evaluated with the intraclass correlation coefficient (ICC), and validity was evaluated by correlation of mean EMTCI scores with the following variables: number of antiepileptic drugs (AEDs), seizure control, patients' perception of seizure control, and adherence to the therapeutic regimen as measured with the Morisky scale. We studied patients with epilepsy followed in a tertiary university-based hospital outpatient clinic setting, aged 18 years or older, independent in daily living activities, and without cognitive impairment or active psychiatric disease. ICCs ranged from 0.721 to 0.999. Mean EMTCI scores were significantly correlated with the variables assessed. Higher EMTCI scores were associated with an increasing number of AEDs, uncontrolled seizures, patients' perception of lack of seizure control, and poorer adherence to the therapeutic regimen. The results indicate that the Brazilian-Portuguese EMTCI is reliable and valid to be applied clinically in the country. The Brazilian-Portuguese EMTCI version may be a useful tool in developing strategies to minimize treatment complexity, possibly improving seizure control and quality of life in people with epilepsy in our milieu.     

Clients with long-term mental disabilities in a Swedish county--conditions of life, needs of support and unmet needs of service provided by the public health and social service sectors.

OBJECTIVE: The purpose of the study was to identify and describe conditions of life and needs of support and public service for clients with a mental disability in a Swedish county population. METHODS: Public health care and social service providers identified clients and completed a questionnaire concerning the clients' conditions of life and their special needs. A consecutively recruited sample of clients completed a similar questionnaire. RESULTS: Totally, 1261 clients were identified. The prevalence of clients with mental disabilities was in the urban and rural areas, 6.4/1000 inhabitants and 4.5/1000 inhabitants, respectively. The most prevalent unmet need (42.9%) was to participate in social and scheduled activities. Almost half of the group was reported to need support in activities of daily living. Clients living in urban settings more often needed support with activities of daily living (P < 0.001), whereas clients living in rural settings more often needed support with job training (P < 0.001) or finding work (P < 0.01). Clients and psychiatric care providers reported the needs of the clients in the same areas; however, clients reported a fewer number of needs than did the care providers. CONCLUSIONS: By using both psychiatric care and social service providers, effective case findings of clients with a mental disability were possible to achieve. In general, there was high agreement between psychiatric care providers and clients regarding the clients' number of needs of support and their unmet needs of service. However, at the individual level, the agreement between client and psychiatric care providers was lower.     

The relationship between characteristics of supported housing and the quality of life of older adults with severe mental illness

This study examined whether group living (as opposed to single living), staff availability and degree of personal freedom are associated with the quality of life of older adults with severe mental illness. A cross-sectional study was carried out in 18 supported living programmes in residential homes for the elderly that differed in terms of these three characteristics. The study included 35 patients with a psychotic disorder and 38 with an anxiety or mood disorder. Quality of life was assessed with the Philadelphia Geriatric Centre Morale Scale (PGCMS) and the Manchester Short Assessment of Quality of Life (MANSA). No association was found between group living and quality of life. Availability of psychiatrically trained staff was associated with life quality only for patients with a psychotic disorder, and perceived amount of personal freedom was associated with life quality only for patients with a non-psychotic disorder. Both differences were seen only on the PGCMS Agitation subscale. Older people with psychotic disorders appear to have relatively high needs for professional psychiatric support, and those with non-psychotic disorders for control over their daily lives. Further research is needed in other settings for older people with severe mental illness, preferably using longitudinal designs.     

Death wishes in the very elderly: data from a 3-year follow-up study

OBJECTIVE: The aim of this study was to study the 3-year outcome of death wishes in an elderly population. METHOD: 1099 very elderly people were examined extensively by physicians, including a structured psychiatric interview. Three years later those who had survived were re-examined (n = 683) using a similar procedure. RESULTS: Of the sample, 11.6% (n = 128) had death wishes at the first examination and 8.9% (n = 54) at the follow-up. Of the 54, 17 have had death wishes persistently during the 3-year period; all of them had psychiatric diagnoses. Of those having death wishes at one of the examinations 70% had psychiatric diagnoses. Attrition was more common in the group with death wishes than in the group without when age, gender, somatic disorders including dementia and disability in daily living were taken into account. CONCLUSION: This study shows that there is a need for a psychiatric examination when elderly people express death wishes.     

Life space and mental health: a study of older community-dwelling persons in Australia

Objectives: The ability of older people to mobilise within and outside their community is dependent on a number of factors. This study explored the relationship between spatial mobility and psychological health among older adults living in Australia.Methods: The survey sample consisted of 260 community-dwelling men and women aged 75–80 years, who returned a postal survey measuring spatial mobility (using the Life Space Questionnaire) and psychological health (using the SF36 Health Related Quality of Life Profile). From the Life Space Questionnaire, participants were given a life-space score and multinomial regression was used to explore the potential effect of mental health on life-space score.Results: The study found a significant association between mental health and life space. However, gender, physical functioning, and ability to drive were most strongly associated with the extent of life space and spatial mobility. Compared to men, older women are more likely to experience less spatial mobility and restricted life space, and hence are more vulnerable to social isolation.Conclusion: Mental health and life space were associated for the older people in this study. These findings have important implications for health policy and highlight the need to support older persons to maintain independence and social networks, and to successfully age in place within their community. This study also highlights the utility of the Life Space Questionnaire in terms of identifying older persons at risk of poorer mental health.     

Community living for elderly people with an intellectual disability: A pilot study

The results are presented of a study in the U.K. which investigated the life-style of 19 elderly people with a developmental disability, residing in two community-based homes after living for many years in large institutions. The study found indications of a good quality of life among the residents studied. Differences in functional abilities as assessed by the Social Training Achievement Record (Williams, 1982) were also found between the residents of the two group homes. The concept of ‘quality of life’ and its measurement are discussed.     

Life expectancy of people with intellectual disability: a 35-year follow-up study

A 35‐year follow‐up study based on a nation‐wide population study of the life expectancy of people with intellectual disability (ID) was undertaken. The study population consisted of a total of 60969 person‐years. A prospective cohort study with mortality follow‐up for 35 years was used and the life expectancy of people with ID was calculated for different levels of intelligence. Proportional hazard models were used to assess the influence of level of intelligence and associated disorders on survival. People with mild ID did not have poorer life expectancy than the general population and subjects with mild ID did not have lower life expectancy in the first 3 decades of life. In cases with profound ID, the proportion of expected life lost was > 20% for almost all age groups. The female preponderance was manifested from the age of 60 years onwards, 25 years later than in the general population. Respectively, survival between sexes differed less. Epilepsy and/or hearing impairment increased the relative risk of death for all levels of ID. The prevalence of people with ID over 40 years was 0.4%. People with ID now live longer than previously expected, and the ageing of people with mild ID appears to be equal to that of the general population, posing new challenges to health care professionals.     

To be or not to be married – that is the question of quality of life in men with schizophrenia

Background The association of gender and marital status with quality of life (QoL) was studied in a representative national sample of long-term schizophrenia patients. Methods The study sample consisted of 1,750 male and 1,506 female 15- to 64-year-old schizophrenia patients discharged from mental hospitals in 1986, 1990 and 1994 in Finland. Comprehensive data were collected from hospital and out-patient case records and the psychiatric teams carried out a structured interview regarding the patients' socio-demographic background, living places, living situation, psycho-social state and functioning and life satisfaction three years after the index discharge. Results Female patients were older, more often married, had been ill for a longer time and had moved after discharge from hospital to live alone or with their spouse more often than men. Women and married patients had migrated more often than men and single patients, but single men had more often remained living in a remote rural area than others. The QoL of single men was poorer than others in almost all the areas in which it was measured: housing conditions, working, daily functioning, number of confidants and psycho-social state. Differences between single women and married men or women were much smaller. Women, independently of their marital status, were more satisfied with their life, had more close interpersonal relationships and had done useful work more often than men. Conclusions Single male patients with schizophrenia seem to have dropped out of the development of society. They remain living in their birthplace and are more dependent than other patients. Single women migrate more consistently into urban areas, which may be favourable for their QoL. Married patients with schizophrenia, possibly partly helped by their spouse, can best follow changes in the society. Female gender also seems to have an independent association with life satisfaction and interpersonal aspects of the QoL. The results of this study strongly emphasise that the associations between gender, marital status and QoL to a great extent depend on the study sample and may also vary by study area. Accepted: 16 July 2001     

Victimization and alcohol problems in the families of disabled persons

Few research data are available on the addiction problems that occur in the families of persons living with disability. There is even less information on the extent of violence disabled people experience in their families as violence directed at them, and little is known how this is connected to alcohol and drug use that may occur in the families of the different groups of disabled persons as compared to healthy control samples. We sought an answer to this question through a case-control study involving 245 young people with disability and 60 healthy controls, using structured interview methods (EuropASI, EuroADAD) and self-assessment questionnaires (Temperament and Character Inventory, Juvenile Victimisation Questionnaire, Child Abuse and Trauma Scale). The presence of a drinking problem in the family was clearly identified as a predictor of an increased risk of victimization, of the occurrence of various types of victimization events, and of their greater frequency. The strong effect of a drinking problem in the family on substance use, psychiatric state and difficulties in aggression management was also confirmed. The predictive effect of a drinking problem was manifested in various ways in different disability groups. Our data draw attention to the link between victimization and drinking problems that can be observed in the families of disabled people, and to the importance of prevention which could help in improving the quality of life of the persons living with disability.     

Disability pension for psychiatric disorders: regional differences in Norway 1988-2000

The aim of this study was to describe regional differences in the incidence of disability pensions (DPs) with psychiatric diagnoses, and to determine whether these differences were related to age and/or gender. We compared the incidence rates of new DPs including all diagnoses, with DP with psychiatric diagnoses in Norwegian regions from 1988 to 2000. The population at risk was all individuals aged 16-67 in each year. Individuals already on DP were excluded. Cases were collected from the Norwegian National Insurance Administration. The results showed that the incidence rate ratio (IRR; Norway reference) for DP with psychiatric diagnoses was most elevated for men 1.41 (95% CI 1.27-1.58) and women 1.48 (95% CI 1.34-1.64) living in the most rural region. Men in the urban area had a higher IRR, 1.33 (95% CI 1.26-1.40), than urban women, 1.02 (95% CI 0.96-1.07). The incidence more than doubled in the youngest age group (16-29 years) and decreased in the oldest age group (60-67 years) between 1988 and 2000. The findings conclude that individuals living in semi-rural regions of Norway are more likely to receive a DP with a psychiatric diagnosis than those living in urban areas. Large gender differences were found in the urban area. Further research is needed to investigate the impact of the psychiatric healthcare system and access to rehabilitation on psychiatric disability.     

Gender differences in depressive symptoms among older adults: a cross-national comparison

OBJECTIVES: To assess country-specific gender differences in depressive symptoms and to explore if exposures and vulnerabilities vary by gender among older men and women from four European countries and Israel. METHODS: Data on 4,449 subjects between 75 and 84 years old were derived from CLESA ("Cross-national determinants of quality of life and health services for the elderly". A ratio score of depressive symptoms derived form the CESD and GDS scales was regressed on education, marital status, living arrangements, comorbidity and disability and all interactions of these factors with gender and country. RESULTS: The prevalence of depressive symptoms is higher in women than in men in every country, except Sweden. Women are more likely to be exposed to socio-structural risks, and have poorer health and more disability than men in most of the countries. However, women are not more vulnerable to these risk factors. CONCLUSIONS: Findings indicate that the female excess in depressive symptoms remains after taking into account the higher prevalence of socio-structural and health-related risk factors and that older women are not more vulnerable than older men to these known risk factors, suggesting the existence of additional pathways linked to gender and/or biological sex.     

Clinical problems in non-fluctuating patients with Parkinson's disease: a community-based study.

OBJECTIVE: To investigate the frequency of nonfluctuators in a community-based prevalence study of Parkinson's disease (PD) and to describe disability, non-motor problems, and health-related quality of life in patients with PD with and without motor fluctuations, and compare the findings to those of two control groups. METHODS: The study involved 245 patients with PD who were participating in a prevalence study and two control groups (100 healthy elderly individuals and 100 patients with diabetes mellitus [DM]). Data were obtained through neurologic examination and a semistructured interview, and by the use of several questionnaires. RESULTS: In this group of unselected patients with PD, 78% did not experience motor fluctuations. Mean duration of treatment with levodopa was 6.3 years. Patients with motor fluctuations had a lower age at onset of disease, longer duration of disease, and a higher daily levodopa dose than patients without fluctuations. Among the non-fluctuating patients, we found more dementia and a higher age at prevalence day. Disability (assessed by the Unified Parkinson's Disease Rating Scale subscales for activities of daily living and motor function and the Hoehn and Yahr stage) was similar in fluctuators and nonfluctuators. Depression, sleep disturbances, and fatigue were equally frequent in both patient groups. The occurrence of these difficulties was clearly more frequent among non-fluctuating patients with PD than among the control subjects. CONCLUSION: Most patients in the general population who have PD do not experience dose-dependent motor fluctuations. Severity of motor disability and neuropsychiatric manifestations are as important in non-fluctuators as in fluctuators. Patients without motor fluctuations have more depression, sleep disturbances, fatigue, and a poorer health-related quality of life than patients with DM and healthy elderly individuals. This also underlines the importance of developing better management and treatment strategies for this group of patients with PD.     

精神分裂症患者残疾水平、生活质量及社会支持状况分析

目的探讨精神分裂症患者的精神残疾现状以及生活质量与社会支持状况。方法采用世界卫生组织残疾评定量表第二版(WHO-DASⅡ)、生活质量综合评定问卷(GQOLI-74)对河北省衡水市精神病院门诊就诊的符合《国际疾病分类(第10版)》(ICD-10)精神分裂症诊断标准的119例患者进行精神残疾、生活质量测评,采用社会支持评定量表(SSRS)对患者的客观支持、主观支持及对支持的利用度进行测评。结果 119例精神分裂症患者重度残疾32人(26.9%)、中度残疾24人(20.2%),轻度残疾63人(52.9%)。不同残疾程度患者GQOLI-74总分及物质生活维度评分差异有统计学意义(F=5.570,P=0.005;F=3.734,P=0.027),多重比较发现生活质量总分轻度残疾组较中、重度残疾组高(P0.05),中、重度组比较差异无统计学意义(P0.05)。物质生活因子分轻度残疾组较重度残疾组高,差异有统计学意义(P0.05)。结论精神分裂症患者的精神残疾较普遍,生活质量尤其是物质生活水平低,精神残疾程度就高。     

Life events and survival in dementia: a 5-year follow-up study

OBJECTIVES: To examine the relationship between life events and survival for people with dementia. To investigate whether this relationship differs from that for people without dementia. To identify which psychiatric and social factors are associated with survival in people with dementia. METHOD: A prospective cohort study with external controls. One hundred and sixteen people with dementia and 50 fit, elderly controls were assessed for life events over a 6-month period. They were followed-up at 5 years and data collected on length of survival. RESULTS: There was an association between two or more severe life events and reduced survival. This association appeared stronger for controls than people with dementia although the interaction was not significant (p = 0.052). The only psychiatric or social factor associated with poor survival in dementia was depression. Other factors associated with reduced survival in the dementia group were male sex, older age, poor physical health, later age of onset and a poorer level of functioning. CONCLUSIONS: This study provides some evidence that having two or more stressful and negative life events may reduce survival in older people with and without dementia. If replicated, this finding will have implications for our understanding of the clinical course of dementia.     

Quality of life of patients with multiple sclerosis

The main aim of the paper was to evaluate quality of life in SM patients and to establish its determinants. Participants in the study were 50 patients hospitalized at the Neurology Ward in Gostynin-Kruk and 100 patients undergoing 24-day rehabilitation in a sanatorium in Kowal. They were examined using the Functional Assessment of Multiple Sclerosis Quality of Life Questionnaire (FAMS) and a questionnaire concerning demographic data and the course of the disease, including the evaluation of motor disability level (EDSS, according to the Kurtzki scale). The group of patients at the Neurology Ward in Kruk consisted of 20 men and 30 women (mean age 35.8 years, mean duration of the disease 9.1 years). Their main source of income was paid employment (60%). In the Kowal sanatorium group there were 46 men and 54 women (mean age 44.6 years, mean duration of the disease 10.1 years). Their main source of income was disability pension (81%). In terms of the EDSS scale 56% of the Kruk patients represented the first level of motor disability (scores from 0.0 to 4.5), while 30% were classified as the second level (scores from 4.5 to 6.5). The proportions were reversed in the Kowal group: the second level (scores from 4.5 to 6.5) was represented by 57%, and the first level by 29% of the patients. Their quality of life (QoL) assessed by means of the FAMS scale was poor in 52% of cases and satisfactory in 48% of cases in the Kruk group, while in the Kowal group 35% of patients assessed their QoL as poor, and 59%--as satisfactory. The SM patients' quality of life was determined mainly by the degree of their motor self-dependence.     

Community services and quality of life: a study of the impact in a remote region]

This longitudinal study with a matched comparison group was conducted in Abitibi, an area in North-West Quebec. Its goal was to observe the impact of community support services on the quality of life of long term psychiatric patients living in a remote area. A cohort of 47 subjects, living in a small town with a comprehensive network of community support services, was compared with a similar group living in a neighbouring city with only outpatient services. The satisfaction with life domains scale developed by Andrews and Withey and adapted by Baker and Intagliata was used at four times during the study. According to the results, the subjective perception of the quality of life in the two groups is comparable, even though the objective conditions are less favorable for the group participating in the community support program. The highest ratings were given to the place of residence, the neighborhood and its commodities; the lowest ratings were given to their love life and financial situation. One can observe a stability of the measures of quality of life over time and for the two groups. The perceptions of the sample living in a remote area are much more favorable than the ones of a comparable group living in the Montreal area. These results are discussed in a double perspective: the role of community support services in the daily life of people who are having severe and persistent problems of mental health, and the interest of measures of quality of life.     

Prevalence and predictors of health service use among Iraqi asylum seekers in the Netherlands

Background A long asylum procedure is associated with higher prevalence rates of psychiatric disorders, lower quality of life, higher disability and more physical health problems. Additional knowledge about health seeking behavior is necessary to guide governments and health professionals in their policies. Objective To measure service use among one of the biggest asylum seekers population in the Netherlands and to assess its relationships with predisposing and need variables (including post-migration living problems). Method Two groups were randomly selected: Group 1 (n = 143), less than 6 months and Group 2 (n = 151), more than 2 years in the Netherlands. Respondents were interviewed with fully structured, culturally validated, translated questionnaires, which contained instruments to measure psychiatric disorders, quality of life, disability, physical health and post-migration living problems. Use of preventive and curative (physical and mental) health services was measured and the relationship with predisposing and need risk factors was estimated with univariate and multivariate logistic regression analyses. Results A long asylum procedure is not associated with higher service use, except for mental health service use and drug use. Use of mental health services is, however, low compared to the prevalence of psychiatric disorders. Low quality of perceived general health and functional disability are the most important predictors of services use. Psychopathology predicts use of a medical specialist (non-psychiatrist), but does not predict mental health service use. Conclusion A high percentage of asylum seekers with a psychiatric disorder is not getting adequate treatment. There is a mismatch between the type of health problem and the type of health service use. The various health services should work together in education, detection, referral and care in order to provide help to this group of patients.