Evaluating the social fitness Programme for older people with cognitive problems and their caregivers: lessons learned from a failed trial.

BACKGROUND: This process evaluation article describes the lessons learned from a failed trial which aimed to assess effectiveness of the tailor-made, multidisciplinary Social Fitness Programme to improve social participation of community-dwelling older people with cognitive problems (clients) and their caregivers (couples). METHODS: A process evaluation was performed to get insight in 1) the implementation of the intervention, 2) the context of intervention delivery from professionals' point of view, and 3) the potential impact of intervention delivery from participants' perspectives. Data was gathered using mixed-methods: questionnaires, focus group discussions, interviews, medical records. RESULTS: 1) Implementation. High study decline (65,3%) was mainly caused by a lack of internal motivation to increase social participation expressed by clients. 17 couples participated, however, intervention delivery was insufficient. 2) Context. Barriers during intervention delivery were most often related to client (changing needs), caregiver (increased burden) and health professional factors (delivery of integrated care lacked routine). 3) Impact Qualitative analyses revealed participants to be satisfied with intervention delivery, we were unable to capture these results through our primary outcome measure. CONCLUSIONS: This process evaluation revealed the Social Fitness study did not fit in three ways. First, framing the intervention on social participation promotion was as threatening to clients. The feeling of being unable to adequately contribute to social interactions seemed to be causing embarrassment. Second, the intervention seemed to be too complex to implement in the way it was designed. Third, there is a tension between the offering of a personalised tailor-made intervention and evaluation through a fixed study design. TRIAL REGISTRATION: The trial which is evaluated in this article (the Social Fitness study) is registered with the Dutch Trial Register (NTR), clinical trial number NTR4347 .

Social participation of people with cognitive problems and their caregivers: a feasibility evaluation of the Social Fitness Programme.

OBJECTIVE: We developed a tailor-made intervention aimed at improving social participation of people with cognitive problems and their caregivers. This programme consists of an integration of healthcare and welfare interventions: occupational therapy, physiotherapy and guidance by a welfare professional. This article describes the feasibility evaluation of this Social Fitness Programme. METHODS: Feasibility in terms of acceptability, demand, implementation, practicability and limited efficacy was evaluated based on experiences from professionals (programme deliverers), people with cognitive problems and their caregivers (programme recipients). We used qualitative research methods (focus group discussions, interviews, collection of treatment records) and applied thematic analyses. RESULTS: The intervention was feasible according to stakeholders, and limited efficacy showed promising results. However, we found feasibility barriers. First, an acceptability barrier: discussing declined social participation was difficult, hindering recruitment. Second, a demand barrier: some people with cognitive problems lacked motivation to improve declined social participation, sometimes in contrast to their caregivers' wishes. Third, implementation and practicability barriers: shared decision-making, focusing the intervention and interdisciplinary collaboration between healthcare and welfare professionals were suboptimal during implementation. DISCUSSION: Although this intervention builds upon scientific evidence, expert opinions and stakeholder needs, implementation was challenging. Healthcare and welfare professionals need to overcome obstacles in their collaboration and focus on integrated intervention delivery. Also, they need to find ways to (empower caregivers to) motivate people with cognitive problems to participate socially. After modifying the intervention and additional training of professionals, a consecutive pilot study to assess feasibility of the research design and outcome measures is justified. Copyright © 2017 John Wiley & Sons, Ltd.

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.

Do general practitioners disclose correct information to their patients suspected of dementia and their caregivers? A prospective observational study.

This study describes what general practitioners (GPs) tell persons who appear to have dementia and their caregivers after assessment and to estimate the number of (in)correct disclosures and their determinants. In a prospective observational study 64 GPs were instructed to use the Dutch national dementia guideline on all consecutive elderly (55+) patients, newly suspected of dementia. Patients were referred to a multi-disciplinary memory clinic team that served as a diagnostic reference standard. Both GPs and the memory clinic team registered their findings and actions on a predefined form. A total of 107 possible cases of dementia were recorded, and 83 were accompanied by their caregiver. After assessment, dementia was considered present in 69 persons, absent in 29, and uncertain in nine. The GPs told the diagnosis to 42% of people with probable dementia and to 74% of their caregivers. The caregivers' experiences were noted in most cases but specific advice was provided in less than half. Only increased severity of dementia was related to more disclosure to patients and caregivers. Disclosures by GPs were correct in most cases. The GPs were much more reluctant to tell the probable dementia diagnosis to patients than to (family) caregivers. The GPs disclosed incorrect diagnoses to two people without dementia, and two with dementia according to the memory clinic diagnosis.

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.

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.

Dementia: predictors of diagnostic accuracy and the contribution of diagnostic recommendations.

OBJECTIVES: To explore and quantify the relative contribution of guideline recommendations and other determinants in the family physicianamprsquos diagnostic work-up of patients suspected of dementia. STUDY DESIGN: We prospectively studied 64 family physicians in an Eastern district in the Netherlands who diagnosed dementia according to the national Dutch guidelines in primary care. Their diagnoses were compared with the reference standard embodied by the memory clinic team of the University Medical Center Nijmegen. POPULATION: The physicians evaluated 107 patients older than 55 years suspected of having dementia. OUTCOMES MEASURED: Predictive values of various clinical and demographic parameters were measured in both univariate and multivariate logistic regression analyses. RESULTS: Activities of daily living (ADL) dependency (odds ratio [OR] = 5.3, P =.03), years since symptoms first started (OR = 1.84, P =.03), and the presence of somatic comorbidity (OR = 0.48, P =.02) independently contributed to the prediction of the presence or absence of dementia. The area under the receiver-operating characteristic (ROC) curve for these 3 variables together was 0.79. The ROC area of the family physiciansamprsquo diagnosis to determine the final diagnosis was 0.74. The number of recommendations applied did not additionally contribute to the assessment of the final diagnosis. CONCLUSIONS: The diagnostic accuracy of the family physician was reasonable. For family physicians, ADL dependency is a better predictor of dementia than cognitive impairment. Family physicians should be aware of diagnostic difficulties in patients with somatic comorbidity. We were unable to confirm the diagnostic value of many of the recommendations of dementia guidelines.

Measuring the opinions of memory clinic users: patients, relatives and general practitioners.

BACKGROUND: The opinions of memory clinic users are important to assess the value of memory clinics. OBJECTIVE: To measure the quality of care of an outpatient memory clinic for the elderly as perceived by patients, their relatives and general practitioners (GPs). METHODS: An observational study was conducted to measure the opinions of the users of a typical outpatient memory clinic. Opinions on five aspects were measured: (1) communication of the results, (2) provision of diagnostic information, (3) attitude of the clinicians, (4) usefulness of the medical assessment, and (5) information and advice to relatives. Patients and relatives were both interviewed with a dementia care satisfaction questionnaire. The GPs' opinions were derived with a self-constructed questionnaire. RESULTS: On 105 consecutive assessments, 101 opinions of GPs, 81 of caregivers and 31 of patients were recorded. Positive opinions were recorded on the way the results were communicated, the usefulness of the assessment and attitude of the clinicians. In contrast to GPs and relatives, patients were less positive about the clarity of the diagnostic information received. Both relatives and GPs were negative on information and advice to relatives. CONCLUSIONS: Patients, caregivers and GPs had positive opinions about the diagnostic value of the memory clinic. Quality improvement could focus on the clarity of the diagnostic information for patients and on better advice to relatives.

Quality assessment in general practice trainers.

INTRODUCTION: General practice trainers hold a key position in general practice training, especially through their provision of a role model. Their own competence in general practice care is important in this regard. The purpose of the study was to evaluate whether a quality assessment programme could identify the strengths and weaknesses of GP trainers in four main domains of general practice care. METHODS: The quality assessment programme comprised validated tests on four domains of general practice: general medical knowledge, knowledge of medical-technical skills, consultation skills and practice management. The criterion for the identification of relative strengths and weaknesses of GP trainers was a variation in the scores of trainers indicating higher and lower scores (strengths and weaknesses) within each domain. RESULTS: GP trainers (n=105) were invited to participate in the study and 90% (n=94) did so. The variation in scores allowed the indication of strengths and weaknesses. Main strengths were: general medical knowledge of the digestive system; knowledge of medical skills relating to the skin; consultation skills concerning empathy; practice management with regard to accessibility. Main weaknesses were: general medical knowledge of the neurological system; knowledge of the medical/technical skills relating to the endocrine metabolic and nutritional system; consultation skills regarding shared decision making; practice management involving cooperation with staff and other care providers. DISCUSSION: This first systematic evaluation of GP trainers identified their strengths and weaknesses. The weaknesses identified will be used in the improvement process as topics for collective improvement in the GP trainers' general curriculum and in individual learning plans.

Assessment of the need for palliative care as perceived by individual cancer patients and their families: a review of instruments for improving patient participation in palliative care.

BACKGROUND: Palliative care should fit the needs of individual cancer patients and their families. Instruments can help to improve needs assessment. This review evaluates questionnaires for the systematic assessment of needs experienced by individual cancer patients for help, care, or support, as well as the needs of their family members. METHODS: The MEDLINE and PsycLIT data bases were searched systematically. Questionnaires were evaluated by reviewing their contents and estimating their validity, reliability, and feasibility for use in caregiving practice. RESULTS: Analysis of the 471 articles identified from the searches yielded 9 questionnaires for the assessment of patients' needs and 6 questionnaires for the assessment of family members' needs. Most of these instruments were carefully constructed; their validity and reliability were satisfactory and well documented. However, in most questionnaires the needs for care were confounded by satisfaction with care, and the problems experienced by patients. Only one questionnaire for patients specifically addressed the need for help; none for family members was so specific. Data on the feasibility of questionnaires for use in regular care were scarce. Issues frequently omitted were spiritual issues, the personal needs of family members, and the continuity of care. CONCLUSIONS: None of the instruments the authors found was complete for all dimensions of palliative care. Most instruments were constructed for research purposes and had not been tested for use in practical care. Further development of practical instruments based on a theoretical concept of needs assessment seems necessary. The feasibility of instruments for use in practical caregiving and their effects on the quality of care needs further research.

Predictors of sense of competence in caregivers of demented persons.

In this study a path analytic approach was used to investigate predictors of the sense of competence in primary caregivers of demented persons. Data were gathered from 141 pairs of demented persons living in the community and their informal primary caregivers. Analysis of the information reported by the primary caregivers indicated that sense of competence and its component domains were affected above all by behavioural problems of the demented person and degree of neuroticism of the primary caregiver. No significant influence was found on the sense of competence of formal support of home helps and district nurses. The results suggested that the amount of support the demented person received from other social network members only had a limited influence on the domains of sense of competence.