Time to diagnosis in young-onset dementia as compared with late-onset dementia.

BACKGROUND: The extent to which specific factors influence diagnostic delays in dementia is unclear. Therefore, the aim of the present study was to compare duration from symptom onset to diagnosis for young-onset dementia (YOD) and late-onset dementia (LOD) and to assess the effect of age at onset, type of dementia, gender, living situation, education and family history of dementia on this duration. METHOD: Data on 235 YOD and 167 LOD patients collected from caregivers from two prospective cohort studies were used. Multiple linear regression analysis was performed. RESULTS: The duration between symptom onset and the diagnosis of YOD exceeded that of LOD by an average of 1.6 years (2.8 v. 4.4 years). Young age and being diagnosed with frontotemporal dementia were related to increases in the time to diagnosis. Subjects with vascular dementia experienced shorter time to diagnosis. CONCLUSIONS: There is a need to raise special awareness of YOD to facilitate a timely diagnosis.

Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research.

BACKGROUND: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. OBJECTIVES: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. METHOD: A modified Delphi study in two rounds RESULTS: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as "confidentiality of genetic information" and "implications of research for relatives" which changes the impact and application of existing ethical topics such as "informed consent" and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. CONCLUSIONS: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics.

Can an EASYcare based dementia training programme improve diagnostic assessment and management of dementia by general practitioners and primary care nurses? The design of a randomised controlled trial.

BACKGROUND: Early diagnosis of dementia benefits both patient and caregiver. Nevertheless, dementia in primary care is currently under-diagnosed. Some educational interventions developed to improve dementia diagnosis and management were successful in increasing the number of dementia diagnoses and in changing attitudes and knowledge of health care staff. However, none of these interventions focussed on collaboration between GPs and nurses in dementia care. We developed an EASYcare-based Dementia Training Program (DTP) aimed at stimulating collaboration in dementia primary care. We expect this program to increase the number of cognitive assessments and dementia diagnoses and to improve attitudes and knowledge of GPs and nurses. METHODS: The DTP is a complex educational intervention that consists of two workshops, a coaching program, access to an internet forum, and a Computerized Clinical Decision Support System on dementia diagnostics. One hundred duos of GPs and nurses will be recruited, from which 2/3 will be allocated to the intervention group and 1/3 to the control group. The effects of implementation of the DTP will be studied in a cluster-randomised controlled trial. Primary outcomes will be the number of cognitive assessments and dementia diagnoses in a period of 9 months following workshop participation. Secondary outcomes are measured on GP and nurse level: adherence to national guidelines for dementia, attitude, confidence and knowledge regarding dementia diagnosis and management; on patient level: number of emergency calls, visits and consultations and patient satisfaction; and on caregiver level: informal caregiver burden and satisfaction. Data will be collected from GPs' electronic medical records, self-registration forms and questionnaires. Statistical analysis will be performed using the MANOVA-method. Also, exploratory analyses will be performed, in order to gain insight into barriers and facilitators for implementation and the possible causal relations between the rate of success of the intervention components and the outcomes. DISCUSSION: We developed multifaceted dementia training programme. Novelties in this programme are the training in fixed collaborative duos and the inclusion of an individual coaching program. The intervention is designed according to international guidelines and educational standards. Exploratory analysis will reveal its successful elements. Selection bias and contamination may be threats to the reliability of future results of this trial. Nevertheless, the results of this trial may provide useful information for policy makers and developers of continuing medical education. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT00459784.

The influence of stressors, appraisal and personal conditions on the burden of spousal caregivers of persons with dementia.

OBJECTIVES: The aim of this study was to explore the main and mediating influences of stressors, a caregiver's appraisal, coping, personal conditions and social resources on the burden of dementia caregivers. METHOD: The study sample consisted of 95 spousal caregivers of non-institutionalized persons with dementia. A path-analytic approach was used to test the conceptual model. RESULTS: The most important factors that were related to burden were the social and behavioural problems of the person with dementia; perceiving the caregiver role as a threat; perceived instrumental support; and the caregiver's functional health status and self-efficacy. The results showed no support for the mediating role of appraisal and coping on the relationship between the demands of the caregiving situation and burden. CONCLUSION: Although we found insufficient support for the empirical tenability of the hypothesised model, this study revealed some new findings of practical interest. The relationships found suggest that it might be possible to reduce the caregiving burden by improving the social functioning of the person with dementia, the caregiver's perceptions and the caregiver's capacity to function in daily life.

Symptoms in the palliative phase of children with cancer.

BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms. PROCEDURE: Forty parents of children who died 1-3 years prior to data collection (structured questionnaire) were invited to participate in the study. RESULTS: The response rate was 32 out of 40 parents (80%). Most frequently mentioned physical symptoms were pain, poor appetite, and fatigue. The children's most mentioned psychological symptoms were sadness, difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone. The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents' psychological symptoms. Health professionals addressed 82% of the children's physical symptoms, 43% of the children's psychological symptoms, and 56% of the parents' psychological symptoms. Parents indicated that after professional attention the proportion of children's physical symptoms that were completely or partially resolved was 18 and 26%, respectively. For children's psychological symptoms the figures were 9 and 25%, respectively, and for parents' psychological symptoms 2 and 23%, respectively. CONCLUSIONS: The burden of symptoms of the child with cancer during the palliative phase and their parents is high. Health professionals focus mainly on the physical symptoms of the child. Relief of symptoms could not be achieved for a large proportion of symptoms. Further prospective research is necessary to investigate the kind, frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent.

Development of a theoretical model for tracing facilitators and barriers in adaptive implementation of innovative practices in dementia care.

The implementation of innovations in the care sector that have been proven effective is not always easy. The implementation of innovative care programs frequently requires adaptive implementation, modified to suit local and regional circumstances. So far there has been very little research into the strategies and factors that facilitate or impede adaptive implementation processes. In the context of a study of the conditions for successful nationwide implementation of meeting centers for people with dementia and their carers, we developed a theoretical model to trace facilitators and barriers in adaptive implementation. We proceeded on the basis of a literature study, previous experiences with setting up meeting centers, and consulting with experts. The theoretical model we constructed distinguishes different phases of implementation, and describes activities and factors that can influence implementation on the micro-, meso- and macro-level for each phase. In addition,the model distinguishes characteristics of the innovation and other preconditions that may facilitate or impede implementation during the entire process. If the model is satisfactory for the study of the implementation of meeting centers, perhaps it can also be used to study other types of care innovations that would benefit from adaptive implementation.

Information for dementia patients and their caregivers: what information does a memory clinic pass on, and to whom?

This study assessed the information provided in a memory clinic and the patient and caregiver factors that influenced the provision of information. The study was part of a larger cross-sectional study of the diagnosis of dementia and satisfaction with information given. The participants were 51 elderly patients suspected of having dementia and living at home together with their caregivers. The main outcome measures were the checklist of information communicated to the patients and caregivers, patients' behavioural problems, patients' instrumental activities of daily living (IADL) problems, and caregivers' sense of competence. The results indicate that basic information about the diagnosis was given to 86% of patients and 88% of caregivers. Specific information about patients' behaviour and professional care was more often given when patients had more cognitive, behavioural, or IADL problems and caregivers had a lower sense of competence. Providing the majority of patients with information is feasible. These results contribute to an explanation of previous findings indicating that caregivers of patients with cognitive problems not related to dementia were less satisfied with the information they received. Adequate information should not only include issues considered relevant by clinicians but should also be tailored to the information needs of patients and caregivers.

Variations in meeting centers for people with dementia and their carers. Results of a multi-center implementation study.

In this study we investigated whether a support program based on the model of the Amsterdam meeting centers for people with dementia and their carers, is in line with the needs and possibilities in other areas in the Netherlands, or if variations in the program are indicated. This study is part of a larger study into the nationwide implementation of meeting centers in the Netherlands. The data gathered on the basis of questionnaires shows that, although the support offer is almost identical on the interregional level, there are differences in terms of initiator(s), type of location, frequency of discussion groups and monthly meeting for all participants, background of staff members, number of volunteers and structural funding. The people with dementia who use the meeting centers in the various regions do not differ significantly on sex, age, civil status, severity of dementia and physical invalidity. The family carers also exhibit more similarities than differences on the interregional level. In every region the majority of carers are female, married or cohabiting, and a minority are gainfully employed.They generally share a household with the person with dementia, or they live in the same municipality. In nearly all centers the majority of carers exhibit psychological and/or psychosomatic symptoms. In most regions participants make use of all elements of the support program (social club, discussion groups, informative meetings, consultation hour). The study shows that the support program based on the Amsterdam model meets general needs of people with dementia and their carers and is therefore generally applicable, but adaptive implementation is desirable.