Barriers and facilitators for physical fitness training in orthopedic geriatric rehabilitation. A qualitative study.

PURPOSE: The aim of this explorative, qualitative study is to identify factors that potentially influence the execution of physical fitness training in inpatient orthopedic geriatric rehabilitation (GR), from the perspectives of patients, their relatives and professionals. MATERIALS AND METHODS: In GR wards of skilled nursing facilities in the Netherlands, semi-structured interviews were held with triads of patients, their relatives and responsible nurses, and focus groups with members of the multidisciplinary teams. Verbatim reports were analyzed according to the framework method. RESULTS: We found twelve categories of barriers and facilitators related to characteristics of the patients, their family, staff, training program and organization. CONCLUSIONS: The barriers and facilitators found largely correspond with those found for participation in exercise in related settings, but also show important differences. This overview of barriers and facilitators enables multidisciplinary teams to design improvements at the level of the organization and interventions, as well as at the level of the individual training program, tailoring it to the patient's circumstances and needs. Further research should focus on weighing these barriers and facilitators to develop a feasible guidance for daily practice, as well as testing their effect on the adherence to existing physical fitness training guidelines.

Physical fitness training is important in reaching functional goals in orthopedic geriatric rehabilitation.Practicing outside of therapy can be stimulated by clarity about expectations, proper training equipment and tailored stimulation/assistance.Training volume and intensity should meet the guidelines, but be tailored to the patient.Characteristics of the program, staff and organization need to be considered as they impact the physical fitness training.

Effect of stress-based interventions on the quality of life of people with an intellectual disability and their caregivers.

PURPOSE: People with intellectual disabilities often show challenging behaviour, which can manifest itself in self-harm or aggression towards others. Real-time monitoring of stress in clients with challenging behaviour can help caregivers to promptly deploy interventions to prevent escalations, ultimately to improve the quality of life of client and caregiver. This study aimed to assess the impact of real-time stress monitoring with HUME, and the subsequent interventions deployed by the care team, on stress levels and quality of life. MATERIALS AND METHODS: Real-time stress monitoring was used in 41 clients with intellectual disabilities in a long-term care setting over a period of six months. Stress levels were determined at the start and during the deployment of the stress monitoring system. The quality of life of the client and caregiver was measured with the Outcome Rating Scale at the start and at three months of use. RESULTS: The results showed that the HUME-based interventions resulted in a stress reduction. The perceived quality of life was higher after three months for both the clients and caregivers. Furthermore, interventions to provide proximity were found to be most effective in reducing stress and increasing the client's quality of life. CONCLUSIONS: The study demonstrates that real-time stress monitoring with the HUME and the following interventions were effective. There was less stress in clients with an intellectual disability and an increase in the perceived quality of life. Future larger and randomized controlled studies are needed to confirm these findings.

Assistive technology such as real-time stress monitoring enables caregivers to timely intervene and contributes to the reduction of challenging behaviour.Real-time stress monitoring contributes to the quality of life of clients and caregivers in healthcare.There is a reduction in the levels of stress of people with an intellectual disability by using stress-monitoring technology.

Exercise testing and training in frail older adults with an orthopedic impairment participating in a geriatric rehabilitation program: an international Delphi study.

BACKGROUND: Little is known about exercise testing and training in orthopedic geriatric rehabilitation. This study aims to obtain expert-consensus-based recommendations on this matter. METHODS: Using an online Delphi study we aimed to reach international expert consensus on statements related to testing and training of endurance capacity and muscle strength. Participants needed to have relevant research or clinical expertise. Statements were evaluated and explanatory comments could be provided. After each round anonymous results were presented to participants. Statements could be adjusted or new ones could be formulated if necessary. Consensus was defined as > 75% of participants agreeing. RESULTS: Thirty experts completed the first round. Twenty-eight (93%) the second and 25 (83%) completed the third round. The majority of experts were physical therapists. Consensus was reached on a total of 34 statements. The statements and comments reflected the need for a pragmatic and tailored approach in this population both for testing and training. For example, for testing endurance capacity, a 6 Minute walk test was promoted and for testing muscle strength, performance in a functional activity was suggested. Ratings of perceived exertion were promoted for monitoring intensity of endurance and muscle strength training in patients without cognitive impairment. CONCLUSION: In orthopedic GR, endurance and muscle strength testing should be pragmatic and is preferably performed in functional activities. For endurance training existing guidelines of the American College of Sports Medicine can be strived for but adapted as needed and for muscle strength training only lower intensities are agreed upon.

Effectiveness and characteristics of physical fitness training on aerobic fitness in vulnerable older adults: an umbrella review of systematic reviews.

OBJECTIVES: To present an overview of effectiveness and training characteristics of physical training on aerobic fitness, compared with alternative or no training, in adults aged over 65 years with various health statuses, providing a basis for guidelines for aerobic training of vulnerable older adults that can be used in geriatric rehabilitation. DESIGN: An umbrella review of systematic reviews that included both randomised controlled trials and other types of trials. DATA SOURCES: MEDLINE, Embase, CINAHL and the Cochrane Library were searched on 9 September 2019. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: We included systematic reviews reporting on physical training interventions that are expected to improve aerobic fitness, presenting results for adults aged 65 years and older, describing at least one of the FITT-characteristics: Frequency, Intensity, Time or Type of exercise, and measuring aerobic fitness at least before and after the intervention. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted the data and assessed the risk of bias. A narrative synthesis was performed. RESULTS: We included 51 papers on 49 reviews. Positive effect of training on aerobic fitness was reported by 33 reviews, 11 reviews remained inconclusive and 5 reviews reported no effect. Training characteristics varied largely. Frequency: 1-35 sessions/week, Intensity: light-vigorous, Time: <10-120 min/session and Types of exercise: many. The methodological quality was most often low. Subgroup analyses revealed positive effects for all health conditions except for trauma patients. Exercise characteristics from current existing guidelines are widely applicable. For vulnerable older adults, lower intensities and lower frequencies were beneficial. Some health conditions require specific adjustments. Information on adverse events was often lacking, but their occurrence seemed rare. CONCLUSION: Physical fitness training can be effective for vulnerable older adults. Exercise characteristics from current existing guidelines are widely applicable, although lower frequencies and intensities are also beneficial. For some conditions, adjustments are advised. PROSPERO REGISTRATION NUMBER: CRD42020140575.

Cost-effectiveness of exergaming compared to regular day-care activities in dementia: Results of a randomised controlled trial in The Netherlands.

The growing number of people living with dementia will result in increased costs of dementia worldwide. The e-Health intervention 'Exergaming' may improve health and quality of life of people with dementia, but the cost-effectiveness is unknown. We assessed the cost-effectiveness of exergaming compared to regular activities from a societal perspective in day-care centres (DCC) for people with dementia and their informal caregivers (IC) alongside a cluster randomised controlled trial. We included 112 dyads (person with dementia and IC) from 20 psychogeriatric DCCs (11 exergaming, 9 control) across the Netherlands. Exergaming consisted of interactive cycling at least twice a week for 6 months. Measurements were conducted at baseline (T0), after 3 (T1) and 6 (T2) months. Primary outcomes were minutes of physical activity, mobility of the participants with dementia (Short Physical Performances Battery, SPPB), and Quality-Adjusted Life-Years (QALYs) of participants with dementia and ICs. ICs filled out cost diaries to measure healthcare and informal care utilisation during the study. There were no statistically significant differences in outcomes or costs between the groups at the level of participants with dementia, the ICs or the dyad. With regard to QALYs and SPPB, the probability that exergaming is cost-effective compared to control was low for all possible willingness-to-pay (WTP) thresholds. However, for physical activity at WTP thresholds of 0, 50 and 250 Euros per additional minute of physical activity, the probability of cost-effectiveness is 0.46, 0.84 and 0.87, respectively. Exergaming in DCC was not cost-effective compared to usual activities. However, considering the small sample size and the large number of missing observations, findings should be interpreted with caution. Future studies with larger samples are recommended to obtain definitive answers on the cost-effectiveness of exergaming. This trial was registered in the Netherlands Trial Register (NTR5537/NL5420).

Value of Personalized Dementia-Specific Quality of Life Scales: An Explorative Study in 3 European Countries.

Measuring Quality of Life (QOL) can be difficult due to its individual character. To explore the value of personalized QOL measurement for people with dementia, personalized versions of two dementia-specific QOL scales (Dementia quality of Life (DQoL) and Quaility of Life in Alzheimer's Disease (QoL-AD)) were constructed. This study investigated whether the personalized measures are more valid to detect variations in QOL than their standard versions for people with mild to moderate dementia, with sufficient internal consistency. Moreover, the relationship between the personalized QOL measures and severity of dementia was investigated. Finally, the study explored the differences between countries regarding the personalized overall QOL and differences in the importance of QOL domains. This explorative one-group design study used baseline data from the MEETINGDEM study into the implementation of the Meeting Centres Support Programme in Italy, Poland and the UK. The personalized versions of the DQoL and QoL-AD were reliable, but not more valid than their standard versions. No relationship between severity of dementia and personalized QOL was found. While no differences were found between countries for the overall QOL score, some QOL domains were valued differently: people with dementia from the UK rated self-esteem, mood, physical health, energy level and the ability to do chores around the house significantly less important than people from Italy and Poland. The personalized versions of the DQoL and QoL-AD may offer dementia care practice important insights into what domains contribute most to an individual's QOL.

Does the Meeting Centre Support Programme decrease the experience of stigmatisation among people with cognitive deficits?

OBJECTIVES: This is the first study to focus on the role and impact of a psychosocial intervention, the Meeting Centre Support Programme (MCSP), for people living with dementia and mild cognitive impairment (MCI) on the experience of stigmatisation across three different European countries. METHOD: A pre/post-test control group study design compared outcomes for 114 people with dementia (n=74) and MCI (n=40) in Italy, Poland and the UK who received either the MCSP or usual care (UC). The 'Stigma Impact Scale, neurological disease' (SIS) was administered at two points in time, 6 months apart. The Global Deterioration Scale (GDS) was used to assess the level of cognitive impairment. RESULTS: Although statistical analysis did not show any significant differences between MCSP and UC at pre/post-test for the 3 countries combined, there were significant results for individual countries. In Italy, the level of SIS was significantly lower (p=0.02) in the MCSP group following the intervention. The level of Social Isolation increased significantly (p=0.05) in the UC group at follow-up in Poland. The level of Social Rejection was significantly higher (p=0.03) over time for UK participants receiving MCSP compared to UC. CONCLUSION: The experience of stigma by people living with dementia and MCI is complex and there may be different country specific contexts and mechanisms. The results do not enable us to confirm or disconfirm the impact of a social support programme, such as MCSP, on this experience. Difficulties in directly measuring the level of stigma in this group also requires further research.

Toward a theory-based specification of non-pharmacological treatments in aging and dementia: Focused reviews and methodological recommendations.

INTRODUCTION: Non-pharmacological treatments (NPTs) have the potential to improve meaningful outcomes for older people at risk of, or living with dementia, but research often lacks methodological rigor and continues to produce mixed results. METHODS: In the current position paper, experts in NPT research have specified treatment targets, aims, and ingredients using an umbrella framework, the Rehabilitation Treatment Specification System. RESULTS: Experts provided a snapshot and an authoritative summary of the evidence for different NPTs based on the best synthesis efforts, identified main gaps in knowledge and relevant barriers, and provided directions for future research. Experts in trial methodology provide best practice principles and recommendations for those working in this area, underscoring the importance of prespecified protocols. DISCUSSION: We conclude that the evidence strongly supports various NPTs in relation to their primary targets, and discuss opportunities and challenges associated with a unifying theoretical framework to guide future efforts in this area.

Effects of Exergaming on Cognitive and Social Functioning of People with Dementia: A Randomized Controlled Trial.

OBJECTIVES: Physical activity in people with dementia (PwD) may enhance physical and mental functioning. Exergaming, which combines physical exercise with cognitive stimulation in a gaming environment, was developed to overcome barriers in performing physical activities. We evaluated the effects of exergaming in day care centers (DCCs) for PwD and informal caregivers (ICs). DESIGN: A randomized controlled trial among 23 DCCs across the Netherlands randomized to exergaming (interactive cycling during 6 months) or a care-as-usual control group. SETTING AND PARTICIPANTS: A total of 112 (73 exergaming, 39 control) community-dwelling dyads (PwD, IC), with the PwD visiting a DCC at least twice per week. METHODS: All outcomes were assessed using structured questionnaires during interviews with PwD and ICs at baseline (T0), 3 months (T1), and 6 months (T2). Primary outcomes: physical activity and mobility of the PwD. SECONDARY OUTCOMES: physical, cognitive, emotional and social functioning, and quality of life for PwD. For ICs: experienced burden, quality of life, and positive care experiences. RESULTS: Mixed-model analyses showed no statistically significant effects on primary outcomes. There were statistically significant positive effects on PwD's secondary outcomes at T2 on cognition [Mini-Mental State Examination (MMSE): r = 2.30, 95% confidence interval (CI): 0.65, 3.96, P = .007; and Trail Making Test part A (TMT-A): r = -28.98, 95% CI: -54.89, -3.08, P = .029], social functioning (Behavior Observation Scale for Intramural Psychogeriatrics subscale 1 (GIP): r = -1.86, 95% CI: -3.56, -0.17, P = .031), and positive post-test effects in ICs on distress caused by the PwD's neuropsychiatric symptoms (NPI-Q total distress: r = -3.30, 95% CI: -6.57, -0.03, P = .048) and on sense of competence (SSCQ: r = 2.78, 95% CI: 0.85, 4.71, P = .005). CONCLUSIONS AND IMPLICATIONS: Exergaming appeared not effective on the primary outcomes. Despite the study being underpowered, we found positive effects on secondary outcomes for PwD and ICs, and no negative effects. We therefore recommend further study, dissemination, and implementation.

Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK.

Objectives: Until now little research has been done to answer the question of whether people with dementia experience stigma. No previous studies investigated possible differences between countries and cultures. Therefore, the aims of this study were to compare the experience of stigma (with social isolation, social rejection and internalised shame as components) among people with dementia and mild cognitive impairment (MCI) (n = 180) in Italy (n = 79), Poland (n = 47) and the United Kingdom (UK) (n = 54); and to investigate possible relationships with demographical and clinical outcomes.Methods: A one group multinational cross-sectional design was used. Stigma was measured with the Stigma Impact Scale (SIS), quality of life aspects with Dementia Quality of Life scale (DQOL) and Quality of Life Alzheimer's Disease scale (QOL-AD), social support with Duke Social Support Index (DSSI), cognitive functioning with Global Deterioration Scale (GDS).Results: The level of stigmatisation (SIS) among study participants varied from 2 to 65 (median = 33.5; Q1 = 27; Q3 = 41). People with dementia in the UK experienced a higher level of stigmatisation than people in Italy and Poland. The experienced stigmatisation negatively correlated with social support (DSSI; rho = -0.42, p = 0.000) and quality of life (QOL-AD; rho = -0.39, p = 0.000). People who experienced a higher level of stigmatisation scored higher in negative mood DQOL subscale (rho = 0.28, p = 0.0002).Conclusion: There is a strong need for research into the individual experience of people with dementia across the world. This could help in providing support and care services that match their experience, needs, preferences; and in designing well informed awareness campaigns based on their voice.

Evaluation of a Companion Robot for Individuals With Dementia: Quantitative Findings of the MARIO Project in an Irish Residential Care Setting.

The current study focuses on the short-term effect of MARIO, a social robot, on quality of life, depression, and perceived social support in persons with dementia (PWD) and evaluates their acceptability of MARIO. Ten PWD in one nursing home took part in a 4-week pilot study, where each participant had up to 12 sessions with MARIO. Sessions comprised engagement in music, news, reminiscence, games, and calendar applications. Standardized questionnaires were administered before and after the 4-week period. Participants had a sustained interest in MARIO during their interactions and an acceptance of MARIO's appearance, sound, and applications. Consequently, participants spent more time socially engaged. No statistically significant differences were found in quality of life, depression, and perceived social support. PWD can engage with a social robot in a real-world nursing home. Future research should incorporate a larger sample and longer intervention period. [Journal of Gerontological Nursing, 45(7), 36-45.].

Implementation and impact of unforgettable: an interactive art program for people with dementia and their caregivers.

ABSTRACTBackground:Previous research shows that museum programs can be beneficial for the quality of life of people with dementia. This study evaluated the implementation of "Unforgettable," an interactive museum program for people with dementia and their caregivers in the Netherlands, and investigated the impact of the program's implementation on the museums as an organization and on the attitudes toward dementia of the museum staff. METHOD: Semi-structured interviews were held with 23 stakeholders to identify facilitators and barriers to the implementation of the Unforgettable program in 12 Dutch museums. Based on the model of Meiland et al. (2004), an overview is made of factors influencing the different levels and phases of the implementation process. The impact of Unforgettable on the attitudes of the museum staff was assessed using the Approaches to Dementia Questionnaire (n = 176). RESULTS: The training in the Unforgettable method, regular evaluation with the program guides and hosts, and cooperation with other organizations appeared essential for successful implementation of Unforgettable. A lack of promotional activities was an impeding factor. Compared to before the implementation, the museum employees' attitudes toward people with dementia became more positive. CONCLUSION: Both successful dissemination of the Unforgettable program and the more positive attitudes toward dementia of employees in museums implementing this program can contribute to the social participation of people with dementia and thereby to their quality of life.

Is socially integrated community day care for people with dementia associated with higher user satisfaction and a higher job satisfaction of staff compared to nursing home-based day care?

OBJECTIVES: To investigate whether community-based (CO) day care with carer support according to the proven effective Meeting Centres Support Programme model is associated with higher satisfaction of people with dementia (PwD) and their informal caregivers (CG) and with a higher job satisfaction among care staff compared to traditional nursing home-based (NH) day care. METHOD: Data were collected in 11 NH day care centres and 11 CO day care centres. User satisfaction of PwD and CG was evaluated in the 11 NH day care centres (nPwD = 41, nCG = 39) and 11 CO day care centres (nPwD = 28, nCG = 36) with a survey after six months of participation. Job satisfaction was measured only in the six NH day care centres that recently transformed to CO day care, with two standard questionnaires before (nSTAFF = 35), and six months after the transition (nSTAFF = 35). RESULTS: PwD were more positive about the communication and listening skills of staff and the atmosphere and activities at the CO day care centre. Also, CG valued the communication with, and expertise of, staff in CO day care higher, and were more satisfied with the received emotional, social and practical support. After the transition, satisfaction of staff with the work pace increased, but satisfaction with learning opportunities decreased. CONCLUSION: PwD and CG were more satisfied about the communication with the staff and the received support in CO day care than in NH day care. Overall job satisfaction was not higher, except satisfaction about work pace.

[Implementation and (cost-)effectiveness of case management for people with dementia and their informal caregivers: results of the COMPAS study]. / Implementatie en (kosten-)effectiviteit van casemanagement voor mensen met dementie en hun mantelzorgers: resultaten van de COMPAS-studie.

BACKGROUND: Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form. AIM OF STUDY: Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation. METHODS: A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs). RESULTS: Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups. The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group. CONCLUSION: The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.

The Cost-Effectiveness of Two Forms of Case Management Compared to a Control Group for Persons with Dementia and Their Informal Caregivers from a Societal Perspective.

OBJECTIVES: The objective of this article was to compare the costs and cost-effectiveness of the two most prominent types of case management in the Netherlands (intensive case management and linkage models) against no access to case management (control group) for people with already diagnosed dementia and their informal caregivers. METHODS: The economic evaluation was conducted from a societal perspective embedded within a two year prospective, observational, controlled, cohort study with 521 informal caregivers and community-dwelling persons with dementia. Case management provided within one care organization (intensive case management model, ICMM), case management where care was provided by different care organizations within one region (Linkage model, LM), and a group with no access to case management (control) were compared. The economic evaluation related incremental costs to incremental effects regarding neuropsychiatric symptoms (NPI), psychological health of the informal caregiver (GHQ-12), and quality adjusted life years (QALY) of the person with dementia and informal caregiver. RESULTS: Inverse-propensity-score-weighted models showed no significant differences in clinical or total cost outcomes between the three groups. Informal care costs were significantly lower in the ICMM group compared to both other groups. Day center costs were significantly lower in the ICMM group compared to the control group. For all outcomes, the probability that the ICMM was cost-effective in comparison with LM and the control group was larger than 0.97 at a threshold ratio of 0 €/incremental unit of effect. CONCLUSION: This study provides preliminary evidence that the ICMM is cost-effective compared to the control group and the LM. However, the findings should be interpreted with caution since this study was not a randomized controlled trial.

Community day care with carer support versus usual nursing home-based day care: effects on needs, behavior, mood, and quality of life of people with dementia.

BACKGROUND: Several studies have shown that the combined community-based Meeting Centres Support Programme (MCSP) for people with mild to moderate dementia and their carers were more effective in reducing behavior and mood problems of people with dementia than traditional nursing home-based (NH) day care. We therefore investigated in this study whether community-based (CO) psychogeriatric day care for people with mild to severe dementia combined with carer support (in accordance with the MCSP), is more effective than regular NH day care. METHODS: A pre-test-post-test control group design was used to compare the effect of CO and NH day care on care needs, behavior and mood problems, and quality of life of people with dementia. 138 dyads of people with mild to severe dementia and family carers participated in the study: 70 from (new and longer existing) CO day cares (experimental group), and 68 from NH day cares (control group). ANCOVAs were performed at post-tests, including baseline data as covariates. RESULTS: After six months, no overall differences on outcome measures were found between CO and NH day cares. However, participants of recently started CO day cares showed fewer neuropsychiatric symptoms, whereas carers in the longer existing CO day cares reported fewer care needs compared to the control group (large effects). Persons with dementia cohabiting with their carer benefitted most from CO day care. CONCLUSIONS: This study shows that combined CO day care has promising added value compared to NH day care, especially for participants with dementia cohabiting with their carer.

Community-dwelling patients with dementia and their informal caregivers with and without case management: 2-year outcomes of a pragmatic trial.

OBJECTIVE: To evaluate outcomes for persons with dementia and primary informal caregivers of 2 types of implemented case management (intensive case management [ICMM] and linkage [LM] models) with no case management (control group). DESIGN: A pragmatic trial using a prospective, observational, controlled, cohort study. SETTING: Community care in the Netherlands. PARTICIPANTS: A total of 521 dyads. INTERVENTION: Case management provided within one care organization (ICMM), case management where multiple case management organizations are present within one region (LM), and a group with no access to case management (control). MEASUREMENTS: Neuropsychiatric problems in persons with dementia assessed by the Neuropsychiatric Inventory (NPI) and psychological health in informal caregivers as measured with the General Health Questionnaire (GHQ-12). Secondary outcomes included care and support needs, quality of life, and institutionalization. Comparability of groups at baseline was secured by inverse-propensity-score-weighted mixed models. RESULTS: No significant differences in changes in total NPI or GHQ-12 scores between the groups over 2 years were found. Secondary outcomes showed better quality-of-life scores for informal caregivers in the ICMM than the LM. Total needs, met and unmet care needs were significantly less in the ICMM compared with the control group. CONCLUSION: Neither case management type affected clinical outcomes of dyads meaningfully. The ICMM has positive impact on caregivers' quality of life and patient's number of needs compared with persons in LM and persons without access to case management respectively.

[Experiencing dementia: evaluation of Into D'mentia]. / Zelf dementie ervaren: Ontwikkeling en evaluatie van de Into D'mentia simulator.

BACKGROUND: Most persons with dementia in the Netherlands live at home, where they are cared for by informal carers such as family members or friends, who offer this care unpaid. Their care-task poses a high burden on these informal carers, increasing the risk of health problems and social isolation. Many informal carers indicate they want more information on the behaviour of those they care for. AIM: To develop and evaluate Into D'mentia, a simulation set in a living kitchen in which visitors experience a day in the life of someone with dementia. During this 'day', modern techniques such as sensors and projections, simulate the limitations of having dementia. This intervention is evaluated on usefulness and user friendliness, and on its effect on empathy, attitudes towards dementia, coping, carer burden, person-centered care capabilities and care satisfaction. RESEARCH: Nine informal carers and 23 care professionals took part in the research into the Into D'mentia simulation. Before and after their visit, they filled in several questionnaires, with, among others, their opinion on the usefulness and user friendliness of this experience. RESULTS: Participants found Into D'mentia a highly useful and user friendly development. They indicated that the simulation offered good insight in the life of someone with dementia, and that they could offer better care thanks to this experience. Participants also indicated that they often thought back on their experiences in the simulation, in order to better understand the behaviour of people with dementia. CONCLUSION: Into D'mentia offers a unique, accessible way to experience the limitations dementia has on daily life. Users indicate that it is a useful and user friendly innovation. Into D'mentia appears to be a suitable method to support informal and professional caregivers.

Evaluation of DEM-DISC, customized e-advice on health and social support services for informal carers and case managers of people with dementia; a cluster randomized trial.

BACKGROUND: Few personalized e-interventions are available for informal and professional caregivers of people with dementia. The DEMentia Digital Interactive Social Chart (DEM-DISC) is an ICT tool to support customized disease management in dementia. The aim of this study was to improve and evaluate DEM-DISC, its user-friendliness and usefulness and to investigate the future implementation. METHODS: A cluster randomized controlled trial (RCT) design was used with measurements at baseline, 6 and 12 months. A total of 73 informal caregivers of people with dementia, supported by 19 randomized case managers participated in the study. In the intervention group, both carers (n = 41) and case managers (n = 13) could access DEM-DISC during twelve months. The control group, 32 carers and 14 case managers, had no access to DEM-DISC. Semi-structured interviews were conducted with ten stakeholders. RESULTS: Informal caregivers who used DEM-DISC for twelve months reported an increased sense of competence than controls. A subgroup of users who frequently accessed DEM-DISC reported more met needs after six months than controls. Overall informal caregivers and case managers judged DEM-DISC as easy to learn and user-friendly. CONCLUSIONS: This study demonstrates that using DEM-DISC had a positive effect on the sense of competence and experienced (met) needs of informal carers. This shows the importance of user-friendly ICT solutions to assist carers in finding appropriate care services tailored to their specific situation and needs. For further implementation of DEM-DISC methods to keep the information updated is of great importance.

Towards personalized integrated dementia care: a qualitative study into the implementation of different models of case management.

BACKGROUND: The aim of this process evaluation was to provide insight into facilitators and barriers to the delivery of community-based personalized dementia care of two different case management models, i.e. the linkage model and the combined intensive case management/joint agency model. These two emerging dementia care models differ considerably in the way they are organized and implemented. Insight into facilitators and barriers in the implementation of different models is needed to create future guidelines for successful implementation of case management in other regions. METHODS: A qualitative case study design was used; semi-structured interviews were conducted with 22 stakeholders on the execution and continuation phases of the implementation process. The stakeholders represented a broad range of perspectives (i.e. project leaders, case managers, health insurers, municipalities). RESULTS: The independence of the case management organization in the intensive model facilitated the implementation, whereas the presence of multiple competing case management providers in the linkage model impeded the implementation. Most impeding factors were found in the linkage model and were related to the organizational structure of the dementia care network and how partners collaborate with each other in this network. CONCLUSIONS: The results of this process evaluation show that the intensive case management model is easier to implement as case managers in this model tend to be more able to provide quality of care, are less impeded by competitiveness of other care organizations and are more closely connected to the expert team than case managers in the linkage model.