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 .

[Informal care in dementia and the power of social health]. / Mantelzorg bij dementie en de kracht van sociale gezondheid.

- In this article, we describe the current state of affairs with respect to informal care for people with dementia. We focus on the impact of informal care on the caregiver, caregiving strategies and effective ways to support informal caregivers, including e-health and technological support.- Informal care for people with dementia is intense and has consequences, both positive and negative: 78% of informal caregivers has good feelings about the care they give, but 15% feels heavily burdened.- A stimulating and supportive approach creates a positive and safe environment. Person-centred interventions providing several types of support are most effective for people with dementia and their informal caregivers.- E-health and technological interventions have favourable effects on trust, concern and depressive symptoms of informal caregivers.- New interventions should focus more on social health: interactions between people with dementia and their informal caregivers and encouragement of both to use their abilities.

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.

Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice.

BACKGROUND: Because the pattern of illnesses changes in an aging population and many people manage to live well with chronic diseases, a group of health care professionals recently proposed reformulating the static WHO definition of health towards a dynamic one based on the ability to physically, mentally and socially adapt and self-manage. This paper is the result of a collaborative action of the INTERDEM Social Health Taskforce to operationalize this new health concept for people with dementia, more specifically the social domain, and to formulate directions for research and practice to promote social health in dementia. METHOD: Based on the expertise of the Social Health Taskforce members (N = 54) three groups were formed that worked on operationalizing the three social health dimensions described by Huber et al.: (1) capacity to fulfil potential and obligations; (2) ability to manage life with some degree of independence; (3) participation in social activities. For each dimension also influencing factors, effective interventions and knowledge gaps were inventoried. After a consensus meeting, the operationalizations of the dimensions were reviewed by the European Working Group of People with Dementia (EWGPWD). RESULTS: The social health dimensions could be well operationalized for people with dementia and are assessed as very relevant according to the Social Health Taskforce and EWGPWD. Personal (e.g. sense of coherence, competencies), disease-related (e.g. severity of cognitive impairments, comorbidity), social (support from network, stigma) and environmental factors (e.g. enabling design, accessibility) that can influence the person with dementia's social health and many interventions promoting social health were identified. CONCLUSION: A consensus-based operationalization of social health in dementia is proposed, and factors that can influence, and interventions that improve, social health in dementia identified. Recommendations are made for research and practice.

Stigma and GPs' perceptions of dementia.

OBJECTIVES: General practitioners (GPs) are crucial to improving timely diagnosis, but little is reported about how they perceive dementia, and whether their perceptions display any elements of stigma. The aim of this study was to explore how GPs' perceptions of dementia map onto current conceptualizations of stigma and whether GPs feel that stigma affects timely diagnosis. METHODS: Twenty-three GPs from England were interviewed by telephone. Data were analyzed by means of content analysis. This involved open coding followed by the application of a coding framework derived from the literature to explore how and to what extent their perceptions relate to stigma as well as the unique nature of their perceptions. RESULTS: Three themes emerged from the analysis: (1) 'making sense of dementia', (2) 'relating perceptions of dementia to oneself' and (3) 'considering the consequences of dementia'. GPs' perceptions of dementia mapped onto current conceptualizations of stigma. Perceptions about dementia that were linked to their own existential anxiety and to a perceived similarity between people with dementia and themselves were particularly salient. GPs perceived dementia as a stigma which was gradually being overcome but that stigma still hindered timely diagnosis. They provided examples of structural discrimination within the health service, including lack of time for patients and shortcomings in training that were to the detriment of people with dementia. CONCLUSION: Measures to involve GPs in tackling stigma should include training and opportunities to explore how they perceive dementia, as well as support to address structural discrimination.

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.

Dementia quality of life instrument--construct and concurrent validity in patients with mild to moderate dementia.

BACKGROUND AND PURPOSE: To translate the Dementia quality of life instrument (DQoL) into German and assess its construct and concurrent validity in community-dwelling people with mild to moderate dementia. METHODS: Dementia quality of life instrument data of two pooled samples (n=287) were analysed regarding ceiling and floor effects, internal consistency, factor reliability and correlations with corresponding scales on quality of life (Quality of Life in Alzheimer's Disease and SF-12), cognition (Mini-Mental State Examination, Alzheimer's Disease Assessment Scale - cognitive), depression (Cornell Scale for Depression in Dementia) and activities of daily living (Interview of Deterioration in Daily Living Activities in Dementia). RESULTS: We found no floor effects (<2%), minor ceiling effects (1-11%), moderate to good internal consistency (Cronbach's α: 0.6-0.8) and factor reliability (0.6-0.8), moderate correlations with self-rated scales of quality of life (Spearman coefficient: 0.3-0.6) and no or minor correlations with scores for cognition, depression or activities of daily living (r<0.3). The original five-factor model could not be confirmed. CONCLUSION: The DQoL can be used in dementia research for assessing positive and negative affect, feelings of belonging and self-esteem. The findings suggest further research to improve the structure of the scales aesthetics, feelings of belonging and self-esteem.

Guidelines for psychosocial interventions in dementia care: a European survey and comparison.

OBJECTIVE: The effectiveness of psychosocial interventions in treating people with dementia and their carers is increasingly emphasised in the literature. Dementia guidelines should summarise the scientific evidence and best practice that is currently available, therefore, it should include recommendations for psychosocial interventions. The aims of our study were (1) to collate dementia guidelines from countries across Europe and to check whether they included sections about psychosocial interventions, and (2) to compare the methodological quality and the recommendations for specific psychosocial interventions in these guidelines. METHODS: The European dementia guidelines were inventoried. The methodological quality of the guideline sections for psychosocial interventions was assessed with the (AGREE) Appraisal of Guidelines Research and Evaluation instrument. The recommendations for specific psychosocial interventions were extracted from each of these guidelines and compared. RESULTS: Guidelines for psychosocial interventions were found in five of 12 countries. Guideline developers, methodological quality and appreciation of available evidence influenced the inclusion of psychosocial interventions in dementia guidelines from Germany, Italy, the Netherlands, Spain and the UK. The UK NICE SCIE guideline had the best methodological quality and included the most recommendations for psychosocial interventions. Physical activity and carer interventions were recommended the most across all guidelines. CONCLUSION: The inclusion of psychosocial interventions in dementia guidelines is limited across Europe. High-quality guidelines that include psychosocial interventions and are kept up to date with the emerging evidence are needed. Throughout Europe, special attention to the implementation of evidence-based psychosocial care is needed in the next few years.

Effects of educational interventions on primary dementia care: A systematic review.

OBJECTIVE: To determine the effects of educational interventions about dementia, directed at primary care providers (PCPs). DESIGN: We searched Medline, Embase, PsycInfo, Cinahl and the Cochrane library for relevant articles. Two researchers independently assessed the citations identified against the following inclusion criteria: educational intervention on dementia directed at PCPs and study designs being randomized controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) or interrupted time series (ITS) analyses. Outcomes of interest were PCPs' knowledge and attitude on dementia, and quality of dementia care at PCP and patient level. RESULTS: Of 3953 citations identified, six articles representing five studies (four cluster RCTs and one CBA) were eligible, describing educational interventions directed at 1904 PCPs. Compliance to the interventions varied from 18 to 100%. Systematic review of the studies showed moderate positive results. Five articles reported at least some effects of the interventions. A small group workshop and a decision support system (DSS) increased dementia detection rates. An interactive 2-h seminar raised GPs' suspicion of dementia. Adherence to dementia guidelines only improved when an educational intervention was combined with the appointment of dementia care managers. This combined intervention also improved patients' and caregivers' quality of life. Effects on knowledge and attitudes were minor. CONCLUSION: Educational interventions for PCPs that require active participation improve detection of dementia. Educational interventions alone do not seem to increase adherence to dementia guidelines. To effectively change professionals' performance in primary dementia care, education probably needs to be combined with adequate reimbursement or other organizational incentives.

Experts' opinions on ethical issues of genetic research into Alzheimer's disease: results of a Delphi study in the Netherlands.

Most publications on the ethical aspects of genetic research into Alzheimer's Disease (AD) concentrate on the differences between the opinions of professionals and non-professionals. Differences in rating of morally relevant issues between groups of professionals have not yet been described. A modified Delphi study in two rounds was held to identify differences between groups of experts (i.e. clinicians, representatives of patient organisations, ethicists and persons with a commercial background). The strongest correlation was found between the opinions of ethicists and representatives of patient organisations (0.67) and between clinicians and ethicists (0.62). Moderate correlation (0.55) was found between the opinions of clinicians and representatives of patient organisations. Persons with a commercial background showed a weak correlation with clinicians (0.41), ethicists (0.35) and representatives of patient organisations (0.30). These differences in rating of morally relevant issues between various professional groups are relevant for clinical practice and dementia care, particularly the different rating of prenatal diagnosis found between clinicians and representatives of patient organisations. Interdisciplinary consultations between various professional groups -including at least researchers, clinicians and ethicists -are recommended to guarantee that all considerations will be incorporated into the debate on ethical issues of genetic research into AD.

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.

An evaluation of a computer based education program for the diagnosis and management of dementia in primary care. An international study of the transcultural adaptations necessary for European dissemination.

OBJECTIVES: The aim of this study is to make an inventory of the changes that are needed to make an interactive computer based training program (ICBT) with a specific educational content, acceptable to professional communities with different linguistic,cultural and health care backgrounds in different European countries. METHODS: Existing educational software, written in two languages was reviewed by GPs and primary care professionals in three different countries. Reviewers worked through the program using a structured critical reading grid. RESULTS: A 'simple' translation of the program is not sufficient. Minor changes are needed to take account of linguistic differences and medical semantics. Major changes are needed in respect of the existing clinical guidelines in every country related to differences in the existing health care systems. CONCLUSIONS: ICTB programs cannot easily be used in different countries and cultures. The development of a structured educational program needs collaboration between educationalists, domain experts, information technology advisers and software engineers. Simple validation of the content by local expert groups will not guarantee the program's exportability. It is essential to involve different national expert groups at every phase of the development process in order to disseminate it in other countries.

The primary care diagnosis of dementia in Europe: an analysis using multidisciplinary, multinational expert groups.

OBJECTIVES: To explore the extent of variation in the detection of dementia in primary care across Europe, and the potential for the development of European guidelines. METHOD: A mixture of focus group and adapted nominal group methods involving 23 experts of different disciplines and from eight European countries. RESULTS: The diagnosis of dementia should be 'timely' rather than 'early'. Timeliness has an impact on the patient, on the caregiver, on healthcare professionals, and on society. Ethical and moral issues may interfere with the aim of timely diagnosis. Guidelines may be important for facilitating a timely diagnosis of dementia, but were infrequently used and not even available in three of the eight countries. Referral pathways often depended on health care system characteristics, differing throughout the eight European countries, whilst diagnostic strategies differed due to varied cultural influences. There was consensus that national variations can be reduced and timely diagnosis enhanced by combining simple tests using a systematic stepwise case-finding strategy, in conjunction with a strong infrastructure of multidisciplinary collaboration. CONCLUSIONS: This study identified three key themes that should be considered in harmonizing European approaches to the diagnosis of dementia in primary care: (1) a focus on timely diagnosis, (2) the need for the development and implementation of guidelines, and (3) the identification of appropriate referral pathways and diagnostic strategies including multi-professional collaboration. The content of guidelines may be determined by the perspectives of the guideline developers.

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.

A European consensus on outcome measures for psychosocial intervention research in dementia care.

Psychosocial intervention makes a vital contribution to dementia care. However, the lack of consensus about which outcome measures to use to evaluate effectiveness prevents meaningful comparisons between different studies and interventions. This study used an iterative collaborative, evidence-based approach to identify the best of currently available outcome measures for European psychosocial intervention research. This included consensus workshops, a web-based pan-European consultation and a systematic literature review and a rigorous evaluation against agreed criteria looking at utility across Europe, feasibility and psychometric properties. For people with dementia the measures covered the domains of quality of life, mood, global function, behaviour and daily living skills. Family carer domains included mood and burden, which incorporated coping with behaviour and quality of life. The only specific staff domain identified was morale, but this included satisfaction and coping with behaviour. In conclusion twenty-two measures across nine domains were recommended in order to improve the comparability of intervention studies in Europe. Areas were identified where improved outcome measures for psychosocial intervention research studies are required.

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.

[Development of memory clinics in The Netherlands]. / Geheugenpoli's in Nederland: Ontwikkelingen sinds 1998.

AIM: Memory Clinics (MC's) are multidisciplinary teams involved with early diagnosis and treatment of people with dementia. In order to attain more insight into the development of this kind of services in The Netherlands, we compared the data of two inventories, one of 1998 and the other of 2004. RESULTS: The number of MC's increased from 12 to 40. The number of referrals per service has also increased. Dementia was the most important syndromal diagnosis. The focus is less exclusively on academic centres. An growing number of MC's has structural collaborations with local service providers for mental health. Differences among MC's exist with regard to the number of referrals per week, the intensity and duration of the diagnostic procedures and the proportion of people without dementia. There is much interest among MC's to participate in a national network for harmonisation and quality control. CONCLUSION: MC's are an increasing part of standard care for people with early dementia and other cognitive disorders.

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.