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BACKGROUND: Timely detection of stress in people with dementia and people with an intellectual disability (ID) may reduce the occurrence of challenging behavior. However, detecting stress is often challenging as many long-term care (LTC) residents with dementia and residents with ID have communication impairments, limiting their ability to express themselves. Wearables can help detect stress but are not always accepted by users and are uncomfortable to wear for longer periods. Integrating sensors into clothing may be a more acceptable approach for users in LTC. To develop a sensor system for early stress detection that is accepted by LTC residents with dementia and residents with ID, understanding their perceptions and requirements is essential. OBJECTIVE: This study aimed to (1) identify user requirements for a garment-integrated sensor system (wearable) for early stress detection in people with dementia and people with ID, (2) explore the perceptions of the users toward the sensor system, and (3) investigate the implementation requirements in LTC settings. METHODS: A qualitative design with 18 focus groups and 29 interviews was used. Focus groups and interviews were conducted per setting (dementia, ID) and target group (people with dementia, people with ID, family caregivers, health care professionals). The focus groups were conducted at 3 time points within a 6-month period, where each new focus group built on the findings of previous rounds. The data from each round were used to (further) develop the sensor system. A thematic analysis with an inductive approach was used to analyze the data. RESULTS: The study included 44 participants who expressed a positive attitude toward the idea of a garment-integrated sensor system but also identified some potential concerns. In addition to early stress detection, participants recognized other potential purposes or benefits of the sensor system, such as identifying triggers for challenging behavior, evaluating intervention effects, and diagnostic purposes. Participants emphasized the importance of meeting specific system requirements, such as washability and safety, and user requirements, such as customizability and usability, to increase user acceptance. Moreover, some participants were concerned the sensor system could contribute to the replacement of human contact by technology. Important factors for implementation included the cost of the sensor system, added value to resident and health care professionals, and education for all users. CONCLUSIONS: The idea of a garment-integrated sensor system for early stress detection in LTC for people with dementia and people with ID is perceived as positive and promising by stakeholders. To increase acceptability and implementation success, it is important to develop an easy-to-use, customizable wearable that has a clear and demonstrable added value for health care professionals and LTC residents. The next step involves pilot-testing the developed wearable with LTC residents with dementia and residents with ID in clinical practice.
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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.
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OBJECTIVES: To identify facilitators, barriers, and formulate recommendations for the implementation of exergames for people with dementia (PWD) in day-care centers (DCCs). METHODS: Within a randomized controlled trial into the effectiveness of exergaming, 73 PWD with their informal caregivers (IC) from 11 DCCs in the Netherlands and two exergame providers participated in a process evaluation. This was a mixed-methods study using focus groups, semi-structured interviews, the Measurement Instrument for Determinants of Innovations, forms for DCC staff, and a short satisfaction questionnaire. We used descriptive statistics for the quantitative outcomes, and thematic analysis for qualitative data. The Medical Research Council guidance for process evaluation was used to identify facilitators and barriers to the implementation, mechanisms of impact, and context. RESULTS: Implementation-related facilitators and barriers were the availability of budget, staff, equipment, instructions, location, and supervision. Mechanisms of impact-related facilitators were experienced positive effects on physical functioning and mobility, cognitive, emotional, and social functioning, and quality of life. Barriers were mainly linked to the need to customize the intervention for each participant. Contextual facilitators were support and enthusiasm from others; barriers were costs and planning. Recommendations by DCC staff involved technical support, instructions, responsibility, location, supervision, planning, and exergaming as a group or individually. CONCLUSION: Users, IC, and staff positively valued exergaming. We found various facilitators and barriers leading to recommendations for successful implementation. We recommend further research into tailoring exergaming to specific users and contexts, and into usability and cost-effectiveness. This may contribute to further dissemination and implementation of exergaming for PWD.
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Demencia , Videojuego de Ejercicio , Humanos , Calidad de Vida/psicología , Cuidadores/psicología , Grupos Focales , Demencia/terapia , Demencia/psicologíaRESUMEN
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.
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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.
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BACKGROUND: In the lives of people with dementia, loneliness is an important issue with psychological and physical consequences. Active assisted living (AAL) technology has been gaining visibility in the care of persons living with dementia, including addressing loneliness. However, to the best of our knowledge, there is a lack of evidence concerning the factors influencing the implementation of AAL technology within the context of dementia, loneliness, and long-term care (LTC). OBJECTIVE: We aimed to identify the familiarity with AAL technology that is promising for addressing loneliness in persons living with dementia in LTC in Europe and the factors influencing AAL technology implementation. METHODS: A web-based survey was developed based on findings from our previous literature review. The Consolidated Framework for Implementation Research guided the development and analysis of the survey. Participants included 24 representatives of Alzheimer Europe member associations from 15 European countries. The data were analyzed using basic statistical methods (descriptive statistics). RESULTS: The baby seal robot Paro was reported to be the most familiar AAL technology by 19 of 24 participants addressing loneliness in people with dementia living in LTC. Participants from Norway (n=2) reported familiarity with 14 AAL technologies, and participants from Serbia (n=1) reported zero familiarity. It seems that countries that invest less in LTC facilities are familiar with fewer AAL technologies. At the same time, these countries report a more positive attitude toward AAL technology, express a higher need for it, and see more advantages than disadvantages than those countries that invest more in LTC. However, a country's investment in LTC facilities does not seem to be linked to other implementation aspects such as costs, planning, and the impact of infrastructure. CONCLUSIONS: Implementation of AAL technology to address loneliness in dementia seems to be linked to familiarity with the technology in a country as well as national investment in LTC facilities. This survey confirms the literature on higher investment countries' critical stance in regard to AAL technology implementation to address loneliness in persons living with dementia living in LTC. Further research is needed to clarify the potential reasons why familiarity with more AAL technology does not seem to be directly linked with acceptance, positive attitude, or satisfaction with AAL technology addressing loneliness in persons living with dementia.
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PURPOSE: We aimed to identify assistive technologies that are promising for addressing loneliness in people living with dementia in long-term care. MATERIALS AND METHODS: A scoping review was conducted. EBSCO, PubMed, Cochrane Library, and ProQuest were searched from 2000 to 2020. The included studies were selected by three independent researchers and summarised, compared, and categorized according to technology type. Publications were eligible for inclusion when they reported on psychosocial interventions aiming to reduce loneliness and/or social isolation in people with dementia in long-term care settings. RESULTS: Twenty-four papers were included (20 original research papers and four reviews). Most studies were conducted in Australia and Europe. The studies aimed to investigate two different types of assistive technology: social robots, and multimedia computer systems. Most studies focussed on behaviour, engagement, and mood as primary outcomes. Only one study directly aimed to alleviate loneliness. CONCLUSIONS: Even though only one study addressed loneliness directly, it became clear that assistive technologies used to apply psychosocial interventions have the potential to impact loneliness in people with dementia in long-term care. However, it remains unclear why loneliness was not included as an outcome and how loneliness could become a key outcome in evaluating assistive technologies.IMPLICATIONS FOR REHABILITATIONLoneliness among older adults is associated with health risks, such as the development of dementia, depression, and increased mortality.Ambient Assisted Living (AAL) technologies have been studied to address loneliness for older adults; however people with dementia are often excluded from such studies.This diverse group of technologies is shown to have a promising impact on outcomes, such as social engagement, quality of life, and mood, but loneliness was studied less often.More research is needed to discover the potential of assistive technologies for people with dementia living in long-term care.
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Demencia , Dispositivos de Autoayuda , Humanos , Anciano , Soledad , Cuidados a Largo Plazo , Calidad de Vida , Intervención PsicosocialRESUMEN
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.
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Ejercicio Físico , Aptitud Física , Anciano , Estado de Salud , Humanos , Revisiones Sistemáticas como AsuntoRESUMEN
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).
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Demencia , Calidad de Vida , Cuidadores , Análisis Costo-Beneficio , Demencia/terapia , Humanos , Países BajosRESUMEN
The increasing number of elderly people living at home demands a strengthening of primary care for (vulnerable) older adults. Therefore, in 2015 the VU University Medical Centre in Amsterdam founded the Universitaire Praktijk Ouderengeneeskunde (UPO) (University Practice for Elderly Care). This practice makes the expertise of the Elderly Care physician (SO) available in primary care through a close and easy accessible collaboration between the SO and the General Practitioner. The aim of this research is an evaluation of the UPO, in order to determine the added value of this care innovation and to identify areas for improvement. This research consists of a quantitative part in which the characteristics of the 190 treated UPO patients have been assessed. Also, costs have been estimated of UPO care compared to expected usual care. The qualitative part of this study consists of 22 interviews with the most important UPO stakeholders. The results of this study show that 1) the UPO seems to meet a demand from general practitioners to support them in the care of vulnerable elderly people with mostly cognitive disorders, 2) this care seems to save costs and 3) the UPO was appreciated by most of those involved. The current results call for applying this care innovation in other regions and to evaluate it on a larger scale.
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Médicos Generales , Universidades , Anciano , Anciano Frágil , Humanos , Atención Primaria de SaludRESUMEN
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.
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Enfermedad de Alzheimer , Calidad de Vida , Cuidadores , Humanos , Italia , Polonia , AutoimagenRESUMEN
We examined the costs and cost-effectiveness of the Meeting Centre Support Programme (MCSP) implemented and piloted in the UK, Poland and Italy, replicating the Dutch Meeting Centre model. Dutch Meeting Centres combine day services for people with dementia with carer support. Data were collected over 2015-2016 from MCSP and usual care (UC) participants (people with dementia-carer dyads) at baseline and 6 months. We examined participants' health and social care (HSC), and societal costs, including Meeting Centre (MC) attendances. Costs and outcomes in MCSP and UC groups were compared. Primary outcomes: Persons with dementia: quality-adjusted life years (EQ-5D-5L-derived); QOL-AD. DQoL was examined as a secondary outcome. Carers: Short Sense of Competence Questionnaire (SSCQ). Incremental cost-effectiveness ratios (ICER) and cost-effectiveness acceptability curves were obtained by bootstrapping outcome and cost regression estimates. Eighty-three MCSP and 69 UC dyads were analysed. The 6-month cost of providing MCSP was 4,703; participants with dementia attended MC a mean of 45 times and carers 15 times. Including intervention costs, adjusted 6-month HSC costs were 5,941higher in MCSP than in UC. From the HSC perspective: in terms of QALY, the probability of cost-effectiveness was zero over willingness-to-pay (WTP) ranging from 0 to 350,000. On QOL-AD, the probability of cost-effectiveness of MCSP was 50% at WTP of 5,000 for a one-point increase. A one-point gain in the DQoL positive affect subscale had a probability of cost-effectiveness of 99% at WTP over 8,000. On SSCQ, no significant difference was found between MCSP and UC. Evidence for cost-effectiveness of MCSP was mixed but suggests that it may be cost-effective in relation to gains in dementia-specific quality of life measures. MCs offer effective tailored post-diagnostic support services to both people with dementia and carers in a context where few evidence-based alternatives to formal home-based social services may be available.
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Cuidadores , Demencia , Análisis Costo-Beneficio , Demencia/terapia , Humanos , Italia , Polonia , Calidad de Vida , Reino UnidoRESUMEN
BACKGROUND: The Meeting Centres Support Programme (MCSP) offers a combined approach to providing practical, emotional and social support to people living with mild to moderately severe dementia and their family carers in the community. METHODS: A mixed methods explanatory design was used. The evaluation took place within the framework of the international Joint Programme - Neurodegenerative Disease Research (JPND) - MEETINGDEM study in nine Meeting Centres in Italy, Poland and the United Kingdom. Eighty-seven people with dementia and 81 family carers completed a user evaluation survey after three months and 83 people with dementia and 84 carers after 6 months of participation in MCSP. Thirty-two people with dementia and 30 carers took part in focus groups after nine months. RESULTS: The percentage of people with dementia who were very satisfied with the programme increased significantly over time (p = 0.05). The majority of carers reported that they felt less burdened after three months of participation in MCSP (48.1% much less; 35.4% a little less). After six months, this percentage increased significantly to 91% (p = 0.04, 57.7% much less; 33.3% little less). Focus group analysis showed that people with dementia and carers in all countries/centres improved their ability to maintain emotional balance. CONCLUSIONS: The MCSP is highly appreciated by people with dementia and carers in all countries and it confirms the results of previous research into MCSP in the Netherlands. Our findings indicate that MCSP is a model that can help its users to increase their capacity to deal with the challenges caused by dementia and can promote emotional balance.
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Demencia , Enfermedades Neurodegenerativas , Cuidadores , Europa (Continente) , Humanos , Italia , Países Bajos , Polonia , Calidad de Vida , Apoyo Social , Reino UnidoRESUMEN
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.
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Disfunción Cognitiva , Demencia , Cuidadores , Cognición , Europa (Continente) , Humanos , Italia , Polonia , Calidad de VidaRESUMEN
OBJECTIVE: To provide a new perspective on integrated biomedical and psychosocial dementia research. BACKGROUND: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying the interaction between biomedical and psychosocial paradigms. One rationale for integrating biomedical and psychosocial research is the discordance between neuropathology and cognitive functioning. The concept of social health might bridge the two paradigms. It relates to how social resources influence the dynamic balance between capacities and limitations. HYPOTHESES: Social health can act as the driver for accessing cognitive reserve, in people with dementia through active facilitation and utilization of social and environmental resources. Thereby we link lifestyle social and opportunities to the brain reserve hypothesis. MANIFESTO: We provide a Manifesto on how to significantly move forward the dementia research agenda.
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Reserva Cognitiva , Demencia , HumanosRESUMEN
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.
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Envejecimiento/fisiología , Demencia , Terapia Cognitivo-Conductual , Demencia/rehabilitación , Demencia/terapia , Ejercicio Físico , Humanos , Meditación , MusicoterapiaRESUMEN
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.
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Demencia , Calidad de Vida , Cuidadores , Cognición , Humanos , Países Bajos , Interacción SocialRESUMEN
OBJECTIVES: Within an implementation study, we investigated the effectiveness of a combined community-based day care programme for persons with dementia and their carers versus traditional psychogeriatric nursing home-based day care. The effects on needs, sense of competence, burden and quality of life of the family carers were studied. METHODS: A pretest-posttest control group design among family carers of people with dementia who joined community-based day care centres (n = 67) or nursing home-based day care centres (n = 64). RESULTS: After six months, family carers using community-based day care more often expressed an unmet need for support regarding psychological distress than carers utilising nursing home-based day care. No effect of community-based day care on sense of competence was found. However, carers with a low sense of competence at baseline using community-based compared to nursing home-based day care became less emotionally burdened by behaviour and mood problems of their relative.Conclusion and discussion: Overall, no added value of community-based day care on needs, sense of competence, burden and quality of life was found. Increased unmet needs on psychological distress may have been caused by the increased awareness of carers participating in the carer programme of community-based day care regarding their own unmet support needs. For carers with a low sense of competence, community-based day care proves to decrease the impact of behaviour and mood problems of their relative. A larger controlled follow-up study is recommended to understand the long-term effects of community-based day care over nursing home-based day care.
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Cuidadores , Casas de Salud , Calidad de Vida , Cuidadores/psicología , Cuidadores/normas , Costo de Enfermedad , Centros de Día , Demencia/enfermería , Estudios de Seguimiento , HumanosRESUMEN
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.
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Disfunción Cognitiva , Demencia , Comparación Transcultural , Estudios Transversales , Humanos , Italia , Polonia , Calidad de Vida , Reino UnidoRESUMEN
OBJECTIVES: Determine the effects of the implementation of Assistive Home Technology (AHT) in group homes on the quality of life (QoL) of people with dementia and on job satisfaction of caregivers. METHOD: Pilot randomized controlled trial in nine in-patient care group homes (group homes with vs. without AHT). Participants were 54 people with dementia and 25 professionals. Outcome measurements were QoL, fall incidents, needs, use of restraints, job satisfaction, workload, and general health. RESULTS: Living in a group home with AHT had a positive effect on four QoL domains: 'social isolation', 'having things to do', 'esthetics', and 'quality of life appreciation'. No effects were found on 12 other QoL domains. Fall incidents during bathroom visits were significantly reduced by the application of AHT. During this implementation phase, in the AHT group home, a moderate negative effect was found on caregiver's appreciation of work circumstances. No effects on other outcome measures were found. CONCLUSION: Positive effects were found on aspects of QoL and fall incidents in the bathroom. The lower caregiver appreciation of work circumstances in the AHT group confirms the importance of intensive support and guidance of personnel during the implementation of AHT.