Relatives Of Dementia Patients Research Articles

Senile dementia and psychiatric stigma among community health service providers and relatives of diagnosed and suspected dementia patients: a cross-sectional study.

The number of people suffering from dementia is increasing rapidly in China. Early identification, referral, and intervention for dementia patients within communities are important to public health. However, these measures could be impacted by misconceptions about dementia and associated psychiatric stigma from community health professionals and relatives of dementia patients. A cross-sectional survey was conducted on 249 participants, which included community doctors, community nurses, and relatives of diagnosed and suspected dementia patients in Guiyang, China. Participants were recruited through convenient sampling. The Chinese version of Dementia Knowledge Assessment Scale (DKAS) and the Perceived Psychiatric Stigma Scale (PPSS) were used to evaluate the participants' knowledge of dementia and dementia-related psychiatric stigma. A total of 249 participants completed the questionnaire. The participants had moderate overall knowledge of dementia and the associated psychiatric stigma. Participants who were ≥45 years old, had a low level of education, had a low monthly income, or gained knowledge of dementia through non-media channels had lower awareness of dementia and stronger psychiatric stigma. In the "Communication & behavior" subscale of DKAS, all participants had a low level of awareness. Relatives of diagnosed and suspected dementia patients had higher total PPSS and "Marital preclusion" subscale scores than community doctors and nurses but lower psychiatric stigma based on the PPSS "Self-deprecation" subscale score. Despite their profession, community doctors and nurses did not show an absolute advantage over relatives of diagnosed and suspected dementia patients in the dementia knowledge, and they even showed higher psychiatric stigma in some subscales. The self-deprecation subscale is related to the identification with negative labels such as "people with a mental illness are the weak". This study shows that reducing stigma on the "Self-deprecation" subscale should be a core component of training and educational programs targeted at improving dementia knowledge among community health service providers.

Cerebrolysin Treatment Reduces the Risk of Mild Cognitive Decline to Dementia in 1st-Degree Relatives of Alzheimer's Patients: A Prospective Comparative Study

To evaluate the long-term effects of annual course therapy with Cerebrolysin on cognitive functioning and the risk of transition to dementia in relatives of patients with Alzheimer's disease (AD) with amnestic-type mild cognitive decline syndrome (aMCI) in comparison with the same group untreated relatives. The cohort included 88 first-degree relatives of BA patients with aMCI syndrome aged 50 to 82 years (mean age 65.0±9.9 years) of which 46 people received course therapy with Cerebrolysin and 42 people were not treated. Clinical, neuropsychological, statistical methods were used. Conducted annual course therapy with Cerebrolysin (a total of 3 courses of infusion therapy: for a course of 20 intravenous infusions of 20 ml of Cerebrolysin in 100 ml of isotonic saline) followed by a follow-up study after 3 months after the end of the therapeutic period. The dynamics of cognitive functioning in the therapeutic group was compared with the corresponding dynamics in the comparison group over the same period. The assessment was carried out on day 0, by the end of 1, 14, 27 and 30 months research. In the therapeutic group, according to the CGI-I scale, by the end of the 3rd course of therapy, in 95.7% of cases, a pronounced or moderate improvement was achieved after each of the courses on all scales and tests. In this group, by the end of the therapeutic period, a significant improvement in the initial mean group scores was established. According to the all scales and tests, a significant improvement of the initial average group scores was found after each course of therapy (p<0.05). In the comparison group there was a significant deterioration (p<0.05) of the average group scores of most of the cognitive scales and test by the end of the observation. The annual conversion from aMCI to dementia due to probable AD was 9.5% only in the comparison group. The average group indicators of all scales and tests significantly worsened starting from the 14th month of observation in the comparison group. The absence of cases of aMCI conversion to dementia in the treated patients for 2.5 years of observation can serve as confirmation of a disease-modifying effect in Cerebrolysin. These results indicate the need for more extensive clinical studies of the preventive effects of Cerebrolysin and to explore the possibility of including such therapy in drug prevention programs for AD in people at high risk for this disease.

Participation in self-help groups: impact on self-management and knowledge

Self-help groups (SHGs) are an inherent part of patient involvement and play an important role in the healthcare system. Until now, however, there has been alack of systematic investigations and quantitative data about the individual impact of self-help for patients and relatives. This study presents the results of acomparison between members of SHGs and non-members. Thereby, the effects of self-help shall be described in terms of empowerment and self-management. The study is part of the project "Health-related Collective Self-Help in Germany" (Gesundheitsbezogene Selbsthilfe in Deutschland-SHILD) funded by the Federal Ministry of Health. The study was conducted with patients from five therapeutic areas (diabetes mellitus type2, prostate cancer, multiple sclerosis, tinnitus, relatives of dementia patients). Participants administered amultidimensional questionnaire (paper-and-pencil or online). Of the 2870 participants in this analysis, 49% were active members of SHGs. Statistical analysis showed some significant, but small differences between the two groups in five out of sevenscales of the Health Education Impact Questionnaire (heiQ) in favour of the SHG members. Furthermore, SHG members performed better in specific knowledge tests. Members see the importance of their group especially in social inclusion, psychosocial relief, coping with the disease and new insights in dealing with the disease. With respect to the study design we cannot rule out that differences might be based on personal characteristics influencing the decision to participate in aSHG or not. But as the results are controlled for confounders, the hypothesis that SHG participation has apositive impact on the outcomes rather than vice versa seems supported.

Rehabilitation mit einem demenzkranken Angehörigen: Ergebnisse einer längsschnittlichen Beobachtungstudie

Caregiving relatives of dementia patients are exposed to considerable burdens. A multimodal rehabilitation concept which enables the inpatient treatment of caregiving relatives together with the dementia patients was evaluated. Questionnaire survey including 121 caring relatives at 3 times of measurement. Indicators of subjective health and the use of nursing and psychosocial support services were measured during the course of the study. Relevant improvements in health can be seen after rehabilitation. Six months after rehabilitation, the effects decrease, but do not reach the baseline value before rehabilitation for any of the variables measured. The multimodal rehabilitation concept shows sustainable effects, at least in some variables. In connection with the high level of satisfaction of the participants, the results indicate that the rehabilitation concept is successful and is associated with a large health benefit.

Analysis on health self-testing conditions of relatives of dementia patients in early stage

Objective To evaluate the health self-testing conditions of relatives of early dementia patients.Methods Relatives of 67 early stage dementia patients in our hospital were selected as the study group,paired with community similar in 67 cases as control group,usingself testing health rating scale (SRHMS),homemade general table of self evaluation results were analyzed.Results The study group health self testing score was (278.18 ± 57.83),mental health score was (67.67 ± 36.74),social health factor score was (47.65 ± 42.76),which was significantly lower than those of the control group,the comparison showed there was significant difference (P ＜ 0.05); as for physiology health factor,two groups showed no significant difference (P ＞ 0.05).Conclusion Early stage dementia patients' relatives have obvious health problems in mental health and social health,which should be paid highly attention for health education,nursing staff should start from their understanding of disease and nursing caring for the sick.Through the health education,their psychological and social health conditions could be improved. Key words: Relatives of dementia patients; Self-testing health

Preferences regarding disclosure of a diagnosis of dementia: a systematic review.

Studies in memory clinics suggest that the majority of patients would like to know of a diagnosis of dementia. It is less clear what preferences are in the community. Our objective was to review the literature on preferences regarding disclosure of a diagnosis of dementia and to assess key arguments in favor of and against disclosure. Systematic search of empirical studies was performed in Pubmed, Embase, and Psycinfo. We extracted preferences of individuals without cognitive impairment (general population; relatives of dementia patients; and physicians) and preferences of individuals referred to a memory clinic or already diagnosed with dementia. A meta-analysis was done using a random effects model. Our main conclusions are based on studies with a response rate ≥75%. We included 23 articles (9.065 respondents). In studies with individuals without cognitive impairment, the pooled percentage in favor of disclosure was 90.7% (95%CI: 83.8%-97.5%). In studies with patients who were referred to a memory clinic or already diagnosed with dementia, the pooled percentage that considered disclosure favorable was 84.8% (95%CI: 75.6%-94.0%). The central arguments in favor of disclosure pertained to autonomy and the possibility to plan one's future. Arguments against disclosure were fear of getting upset and that knowing has no use. The vast majority of individuals without and with cognitive impairment prefers to be informed about a diagnosis of dementia for reasons pertaining to autonomy.

Anticipatory Grief among Close Relatives of Patients with Parkinson’s Disease

Several illnesses cause suffering and pre-death grief among close relatives, as in cancer and dementia. This might be the case also at Parkinson’s Disease (PD). We aimed at getting grief self-reports of relatives of PD patients using the same instrument (AGS) as in former grief studies to see similarities and differences. Anticipatory Grief Scale (AGS) and questions about background variables were sent to PD caregiver support groups in Sweden to be handed out to the members at their meetings. Close relatives of persons with Parkinson’s disease (PD) reported feelings and reactions on the AGS, and the results were compared with those from relatives of dementia patients in a former study also using the AGS. Self-estimations about the duration of illness, the condition at the time for questioning, and the perceived quality of care of the relative with PD were also made. The study showed an overall stressful situation including feelings of missing and longing, inability to accept the terminal fact, preoccupation with the ill, tearfulness, sleeping problems, anger, loneliness, and a need to talk. The PD and dementia groups appeared to show much more anticipatory grief similarities than dissimilarities. The duration of the disease did not influence the grief reactions, which, however, was shown for perceived quality of care as regards irritability and preoccupation thinking of the ill relative. Also the respondents’ perception of a bad condition of their relatives showed increased reports on loneliness, a need to talk about the illness, personal dysfunction, and not planning ahead.

Predictors of burnout in the family caregivers of Alzheimer's disease: Evidence from Turkey

The aim of this study was to investigate the factors related to burnout in the family caregivers of Alzheimer's disease. Subjects included in the study were 44 Alzheimer's disease patients and their primary caregivers. Patients were evaluated with Mini Mental State Examination, Brief Psychiatric Rating Scale, Physical Self-Maintenance Scale and Geriatric Depression Scale, and carers were administered Maslach Burnout Inventory, Ways of Coping Scale, Hamilton Anxiety Rating Scale and Hamilton Depression Rating Scale. The emotional exhaustion of caregivers revealed a significant relationship with the caregivers' anxiety, submissive approach for coping and the patient's self-maintenance. Depersonalisation was found to be related to the depression score of the patient. This study may serve to increase clinicians' awareness of burnout in relatives of dementia patients. It points to the fact that research for determining the causes and consequences of burnout in the family caregivers is warranted.

Risk of Cognitive Impairment or Dementia in Relatives of Patients With Parkinson Disease

The evidence for increased risk of dementia in relatives of patients with Parkinson disease (PD) remains conflicting. To study the risk of cognitive impairment or dementia in first-degree relatives of patients with PD. We conducted a historical cohort study of 1019 first-degree relatives of 162 patients with PD and of 858 relatives of 147 matched controls representative of the population of Olmsted County, Minnesota. In addition, we studied 2716 first-degree relatives of 411 patients with PD referred to Mayo Clinic. We administered via telephone a cognitive test directly to relatives or a dementia questionnaire to proxies. For relatives reported by proxies to have dementia, we obtained copies of their medical records to confirm the diagnosis. We also obtained dementia information from a medical records-linkage system. In the overall population-based sample, the risk of cognitive impairment or dementia was increased in relatives of patients with PD compared with relatives of controls (hazard ratio, 1.37; 95% confidence interval, 1.03-1.81; P = .03) and was particularly increased in relatives of patients with onset of PD at age 66 years or younger (youngest tertile; hazard ratio, 1.73; 95% confidence interval, 1.21-2.46; P = .003). The findings were consistent in several sensitivity analyses. In the referral-based sample, the risk of cognitive impairment or dementia in relatives increased with younger age at onset of PD but did not vary by other clinical characteristics. Cognitive impairment or dementia may share familial susceptibility factors with PD (genetic or nongenetic).

Dementia in First-Degree Relatives of Patients with Frontotemporal Dementia

Several studies have found a clustering of dementia in relatives of patients with frontotemporal dementia (FTD). This study analysed the familial aggregation of FTD specifically as well as the occurrence of dementia in general in first-degree relatives of patients with FTD. A family history study was carried out on 478 first-degree relatives of 74 index patients suffering from FTD. Cases of organic dementia and of FTD were diagnosed according to internationally accepted diagnostic criteria. Age- and sex-specific incidences of organic dementia and of FTD were calculated as was the proportion of FTD in relation to organic dementia in general; comparisons with clinical and population studies were made. There was a tenfold increase in the incidence of FTD in the first-degree relatives of FTD patients compared with the incidence of FTD in a population study. The proportion of FTD in relation to all types of organic dementia was much higher in relatives of FTD patients compared to the corresponding proportions in clinical and population-based studies. There was a small, non-significant difference between the present family history study and the population studies as regards the incidence of organic dementia. The findings suggest that hereditary and/or shared environmental factors are strongly involved in the aetiology of FTD. There were no indications of familial clustering of organic dementia in general in relatives of FTD patients.

75-1 - Age-dependent risks for primary progressive dementia in relatives of patients with Alzheimer's disease

75-1 - Age-dependent risks for primary progressive dementia in relatives of patients with Alzheimer's disease

Risk of Dementia in First-Degree Relatives of Patients With Alzheimer's Disease and Related Disorders

First-degree relatives of patients with Alzheimer's disease (AD) are at greater risk for dementia when compared with the relatives of their healthy peers, but not when compared with the relatives of patients with Parkinson's disease. This may indicate that the risk of dementia in these relatives is not specific to AD or that these studies are biased. We obtained a family history and vital status information on each first-degree relative of patients attending a clinic and in a group of recruited healthy elderly subjects. Patients formed two groups: probable AD and other forms of dementia or cognitive disorders without dementia. The odds of dementia in first-degree relatives did not differ between patient groups. The odds of dementia in relatives of patients with probable AD or other forms of dementia was six times that in the relatives of the healthy elderly subjects. The cumulative incidence of dementia increased with age in the first-degree relatives of all subjects. Approximately 50% of the first-degree relatives of patients with AD were demented by age 91 years, but almost the same number of the other patient group's relatives were demented as well. That figure was never reached in the healthy elderly subject's relatives. Because the risk of dementia in first-degree relatives of patients with AD was similar to that for patients with other disorders, we cannot exclude the possibility that this is the result of selection and information biases. Our investigation implies that the increased risk of dementia may not be specific to relatives of patients with AD; the risk may also be increased in first-degree relatives of patients with other neurologic disorders.

Risk of dementia in relatives of patients with early onset Alzheimer's disease : ∗C.M. van Duijn, L.A. Farrer, A. Hofman. Department of Epidemiology and Biostatistics, Erasmus University Medical School, Rotterdam, The Netherlands, and Department of Neurology and School of Public Health, Boston University School of Medicine, Boston, USA

Risk of dementia in relatives of patients with early onset Alzheimer's disease : ∗C.M. van Duijn, L.A. Farrer, A. Hofman. Department of Epidemiology and Biostatistics, Erasmus University Medical School, Rotterdam, The Netherlands, and Department of Neurology and School of Public Health, Boston University School of Medicine, Boston, USA

Risk of dementia in relatives of patients with Alzheimer's disease.

Using a family history questionnaire, we investigated the occurrence of dementia among relatives of patients with a clinical diagnosis of Alzheimer's disease (AD) and among the relatives of age-matched control subjects. Cumulative lifetime risk of developing AD-type dementia was greater among relatives of AD probands and was consistent with an autosomal dominant genetic mode of transmission. Although the lifetime risk of AD-type dementia was similar among relatives of early-onset and late-onset AD probands, relatives of early-onset probands tended to have an earlier onset of dementia than did relatives of late-onset AD probands. This result raises the possibility that age at onset of dementia in AD may be genetically determined.