An embedded qualitative study of the experiences of people with dementia, their caregivers and volunteer older adults who participated in the CREST resilience-building psychosocial intervention.

BACKGROUND: A novel Complex REsilience-building psychoSocial intervenTion (CREST) targeted at people with dementia, their informal carers, general practitioners and the wider community with the aim of increasing resilience and strengthening the personal attributes or external assets of people with dementia living at home, in the community, was developed. It included three components: cognitive stimulation therapy (CST), physical exercise and dementia education. A non-randomised feasibility study was conducted of the CREST intervention, the aim of which was to inform the design of a future randomised controlled trial. This article presents the findings from the qualitative component of the CREST intervention feasibility study, describing the experience of the people with dementia and their caregivers who participated and the volunteer older adults who supported the intervention. METHODS: A descriptive qualitative research approach using semi-structured interviews was undertaken. Key stakeholders (people with dementia (n = 9), their caregivers (n = 9) and the volunteer older adults from the physical exercise component (n = 9)) were interviewed about the intervention and the perceived impact of their participation. RESULTS: The social aspect of the CREST intervention proved to be important for all three groups. Attendance remained high throughout the intervention. The people with dementia spoke positively about their participation in the CST and exercise components of the CREST intervention. The caregivers liked receiving coping strategies focused on how to communicate better with the person they cared for and how to better manage their own self-care and they liked the group element of the programme. The volunteer older adults supported the people with dementia in taking part in the exercise component, motivating them to do the exercises and helping with social interaction within the group. The volunteers gained exposure to the illness and as a result understood more about dementia and felt better equipped to communicate and deal with people with dementia. CONCLUSION: Participation in the CREST intervention produced a positive impact on all three groups. The social element of the intervention was noted by everybody and was regarded as being beneficial. Qualitative insights emphasised the value of embedding qualitative research within feasibility studies to inform future intervention design. Further research should focus on conducting a full-scale randomised controlled trial to evaluate CREST's effectiveness and explore its application to individuals with more advanced dementia. TRIAL REGISTRATION: ISRCTN25294519.

Implementation of exergaming for people with dementia: facilitators, barriers, and recommendations.

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.

Cost-effectiveness of the FindMyApps eHealth intervention vs. digital care as usual: results from a randomised controlled trial.

OBJECTIVES: Despite growing interest, the cost-effectiveness of eHealth interventions for supporting quality of life of people with dementia and their caregivers remains unclear. This study evaluated the cost-effectiveness of the FindMyApps intervention, compared to digital care-as-usual. FindMyApps aims to help people with dementia and their caregivers find and learn to use tablet apps that may support social participation and self-management of people with dementia and sense of competence of caregivers. METHOD: A randomised controlled trial (Netherlands Trial Register NL8157) was conducted, including people with mild cognitive impairment (MCI) or mild dementia and their informal caregivers (FindMyApps n = 76, digital care-as-usual n = 74). Outcomes for people with MCI/dementia were Quality-Adjusted Life-Years (QALYs), calculated from EQ-5D-5L data and the Dutch tariff for utility scores, social participation (Maastricht Social Participation Profile) and quality of life (Adult Social Care Outcomes Toolkit), and for caregivers, QALYs and sense of competence (Short Sense of Competence Questionnaire). Societal costs were calculated using data collected with the RUD-lite instrument and the Dutch costing guideline. Multiple imputation was employed to fill in missing cost and effect data. Bootstrapped multilevel models were used to estimate incremental total societal costs and incremental effects between groups which were then used to calculate Incremental Cost-Effectiveness Ratios (ICERs). Cost-effectiveness acceptability curves were estimated. RESULTS: In the FindMyApps group, caregiver SSCQ scores were significantly higher compared to care-as-usual, n = 150, mean difference = 0.75, 95% CI [0.14, 1.38]. Other outcomes did not significantly differ between groups. Total societal costs for people with dementia were not significantly different, n = 150, mean difference = €-774, 95%CI [-2.643, .,079]. Total societal costs for caregivers were significantly lower in the FindMyApps group compared to care-as-usual, n = 150, mean difference = € -392, 95% CI [-1.254, -26], largely due to lower supportive care costs, mean difference = €-252, 95% CI [-1.009, 42]. For all outcomes, the probability that FindMyApps was cost-effective at a willingness-to-pay threshold of €0 per point of improvement was 0.72 for people with dementia and 0.93 for caregivers. CONCLUSION: FindMyApps is a cost-effective intervention for supporting caregivers' sense of competence. Further implementation of FindMyApps is warranted.

Challenges of using a Fitbit smart wearable among people with dementia.

OBJECTIVES: Limited research on using smart wearables such as Fitbit devices among people with dementia has shown favourable outcomes. The aim of this study was to explore the acceptability and feasibility of using a Fitbit Charge 3 among people with dementia, living in the community, who took part in the physical exercise component of the Comprehensive REsilience-building psychoSocial intervenTion pilot study. METHODS: A mixed methods study was conducted; Quantitative data relating to wear rates for the Fitbit were recorded and qualitative data were collected by group and individual interviews with the people with dementia and their caregiver about their experience of wearing/using the Fitbit in the study. RESULTS: Nine people with dementia and their caregiver completed the intervention. Only one participant wore the Fitbit consistently. Supporting set-up and use of the devices was time consuming and caregiver involvement was essential for day-to-day support: none of the people with dementia owned a smartphone. Few of them engaged with the Fitbit features, primarily only using it to check the time and only a minority wanted to keep the device beyond the intervention. DISCUSSION: When designing a study using smart wearables such as a Fitbit among people with dementia, consideration should be given to the following: the possible burden on caregivers supporting the use of the device; a lack of familiarity with this technology in the target population; dealing with missing data, and the involvement of the researcher in setting up and supporting use of the device.

The effects of psychosocial interventions using generic photos on social interaction, mood and quality of life of persons with dementia: a systematic review.

BACKGROUND: Although family photos are often used in the psychosocial care for people with dementia, little is known about the use and effectiveness of generic photos. This systematic literature review explored psychosocial interventions using generic photos for people with dementia, and the effects they have on their social interaction and/or mood and/or quality of life. In addition, it was investigated whether these interventions made use of technology in its implementation. METHODS: A systematic search on the following databases was performed: PubMed, Embase, APA PsychInfo, Cinahl, Web of Science, Scopus and Cochrane Central. Inclusion and exclusion criteria were based on the PICO model (Population, Intervention, Comparison, Outcome), and quality assessment was undertaken using the Weight of Evidence Framework. Narrative synthesis was undertaken to summarize study characteristics- settings and designs, type of psychosocial interventions identified, type of photos and technology used, outcome measures, and results. RESULTS: A total of 2,035 results were found, however after title, abstract and full-text screening, a total of 8 studies were included. The most common psychosocial intervention using generic photos was found to be reminiscence therapy, followed by art-viewing activities. In studies that used technology, it was reported that viewing digitalized photos were either similar or better to conventional printed photos. Despite photos being generic, it was found that generic photos could still hold personal significance to the person with dementia. Some positive and significant effects were found for the outcomes social interaction, mood and quality of life, though no study evaluated all three outcomes. Two studies were rated as having high overall quality, 4 were rated as fair, and 2 studies had a low quality assessment rating. CONCLUSION: Studies found using generic photos were limited, showing varying outcomes and methodological quality. Firm conclusions on the effectiveness of interventions using generic photos are not possible. However, the use of generic photos in psychosocial interventions is a promising area for future research. Researchers should consider studies with better methodological quality and larger samples; and qualitative studies where the intention is to get better insight into successful implementation and impact mechanisms of such psychosocial interventions. TRIAL REGISTRATION: n/a.

Potential Facilitators of and Barriers to Implementing the MINI Robot in Community-Based Meeting Centers for People With Dementia and Their Carers in the Netherlands and Spain: Explorative Qualitative Study.

BACKGROUND: Social robots, as a form of digital health technologies, are used to support emotional, cognitive, and physical care and have shown promising outcomes in enhancing social well-being in people with dementia (PwD) by boosting emotions, social interactions, and activity participation. OBJECTIVE: The goal is to investigate the attitude of stakeholders and potential facilitators and the barriers to implementing the social robot MINI in community-based meeting centers (MCs) for PwD and carers in the Netherlands and Spain. METHODS: Based on the British Medical Research Council guidance for process evaluation of the implementation of complex interventions and the model for tracing the facilitators of and barriers to the adaptive implementation of innovations in dementia care, an explorative qualitative study was conducted. Following the introduction of the MINI robot, 11 stakeholders were interviewed in 3 MCs in the Netherlands and 1 in Spain, as well as stakeholders in health and welfare organizations in both countries. In addition, 12 adults with dementia participated in focus groups. The data were thematically analyzed and narratively described. RESULTS: Overall, the stakeholder opinion and interest in the MINI robot were positive. The most important (expected) facilitating factors mentioned by stakeholders appeared to be human resources, funding, the impact of the MINI robot on the users and programs of the MCs, characteristics of the innovation, and collaboration with other care and welfare organizations. However, the (expected) barriers mentioned concerned the physical context and functionalities of the MINI robot, the user context, and MC activity policies. CONCLUSIONS: The findings will inform professional stakeholders, such as MC directors and managers, as well as care and welfare organizations, on the practicality of using the MINI robot in MCs. Furthermore, our research will aid MINI robot developers in tailoring its features to PwD's preferences and demands and MC policies, which will contribute to the MINI robot's effective adoption and deployment.

Information on advance care planning on websites of dementia associations in Europe: A content analysis.

OBJECTIVE: To gain insight into the advance care planning (ACP) content provided on dementia associations' websites in Europe. METHODS: We conducted a content analysis of dementia associations' websites in Europe regarding ACP information, using deductive and inductive approaches and a reference framework derived from two ACP definitions. RESULTS: We included 26 dementia associations' websites from 20 countries and one European association, covering 12 languages. Ten websites did not mention ACP. The information on the remaining 16 varied in terms of themes addressed and amount of information. Four explicitly define ACP. Several websites made multiple references to legal frameworks (n = 10, 705 excerpts), choosing legal representatives (n = 12, 274 excerpts), and care and treatment preferences (n = 14, 89 excerpts); while themes such as communication with family (n = 9, 67 excerpts) and professionals (n = 9, 49 excerpts) or identifying personal values (n = 9, 73 excerpts) were mentioned on fewer websites or addressed in fewer excerpts. CONCLUSION: ACP content is non-existent in 10 out of 26 dementia associations' websites. On those that have ACP content, legal and medical themes were prominent. It would be beneficial to include more comprehensive ACP information stressing the importance of communication with families and professionals, in line with current ACP conceptualisations framing ACP as an iterative communication process, rather than a documentation-focused exercise.

Validity and reliability of the Danish version of QUALIDEM.

INTRODUCTION: QUALIDEM is a dementia-specific QoL instrument that allows a proxy-based Quality of Life rating in all stages of dementia. It was originally developed in The Netherlands and has later been translated into English and German. This study endeavoured to translate, cross-culturally adapt and test important psychometric properties of a Danish version in a cross-sectional validation study with a nested test-retest design. METHOD: All items underwent forward and backward translation by bilingual academics. Persons with dementia were recruited from 28 healthcare units in a Danish municipality. The severity of dementia was determined using a pragmatic approach allowing the site team to trichotomise the disease (mild, moderate-severe and very severe) before scoring the QUALIDEM. Psychometric properties for QUALIDEM were determined for item characteristics, construct validity, internal consistency, test-retest reliability, measurement error and floor and ceiling effects. The study was approved by The Danish Data Protection Agency. RESULTS: A total of 169 persons with dementia, aged 51-103, were included. The construct validity testing showed that the overall proportion of correctly hypothesised correlations was 83%. Testing for internal consistency, Cronbach's α ranged from 0.65 to 0.85 in mild-severe dementia with three out of nine subscales having values below 0.7. For very severe dementia, Cronbach's α ranged from 0.44 to 0.81, with three out of six subscales having insufficient values. For test-retest reliability, the intra-class correlation coefficients ranged from 0.56 to 0.86. The 'scale width' method revealed a marked ceiling effect in all subscales ranging from 30.6% to 87.7%. DISCUSSION: The QUALIDEM was successfully translated and cross-culturally adapted into Danish. Most subscales show acceptable internal consistency and test-retest reliability. However, a substantial measurement error and ceiling effect was present in most subscales. CONCLUSION: With few exceptions, the subscales of the Danish version of QUALIDEM have acceptable validity and reliability. Future research should address the limitations of the ceiling effects.

Known in the nursing home: development and evaluation of a digital person-centered artistic photo-activity intervention to promote social interaction between residents with dementia, and their formal and informal carers.

BACKGROUND: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. METHODS: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo-Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. DISCUSSION: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. TRIAL REGISTRATION: Netherlands Trial Register: NL9219 ; registered (21 January 2021); NTR (trialregister.nl).

Evaluation of FindMyApps: protocol for a randomized controlled trial of the effectiveness and cost-effectiveness of a tablet-based intervention to improve self-management and social participation of community-dwelling people with mild dementia, compared to usual tablet use.

BACKGROUND: For the rising number of people living with dementia, cost-effective community-based interventions to support psychosocial care are needed. The FindMyApps intervention has been developed with and for people with dementia and their caregivers, to help them use tablets to facilitate self-management and engagement in meaningful social activities. A feasibility study and exploratory pilot trial evaluating FindMyApps have been carried out. This definitive trial further evaluates the effectiveness of the intervention and, for the first time, the cost-effectiveness. METHODS: A randomized controlled non-blinded single-center two-arm superiority trial will be conducted. Community-dwelling people with Mild Cognitive Impairment (MCI), or dementia with a Mini Mental-State Examination (MMSE) of > 17 and < 26, or Global Deterioration Scale 3 or 4, with an informal caregiver and access to a wireless internet connection will be included. In total, 150 patient-caregiver dyads will be randomly allocated to receive either usual care (control arm - tablet computer; n = 75 dyads) or usual care and the FindMyApps intervention (experimental arm - tablet computer and FindMyApps; n = 75 dyads). The primary outcomes are: for people with dementia, self-management and social participation; for caregivers, sense of competence. In addition to a main effect analysis, a cost-effectiveness analysis will be performed. In line with MRC guidance for evaluation of complex interventions a process evaluation will also be undertaken. DISCUSSION: Results of the trial are expected to be available in 2023 and will be submitted for publication in international peer-reviewed scientific journals, in addition to conference presentations and reporting via the EU Marie Sklodowska-Curie DISTINCT ITN network. By providing evidence for or against the effectiveness and cost-effectiveness of the FindMyApps intervention, the results of the trial will influence national implementation of FindMyApps. We hope that the results of the trial will further stimulate research and development at the intersection of technology and psycho-social care in dementia. We hope to further demonstrate that the randomized controlled trial is a valuable and feasible means of evaluating new digital technologies, to stimulate further high-quality research in this growing field. TRIAL REGISTRATION NUMBER: Netherlands Trial Register: NL8157 ; registered 15th November 2019.

Meeting centres support programme highly appreciated by people with dementia and carers: a European cross-country evaluation.

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.

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.

Linking two new E-health caregiver interventions to meeting centres for people with dementia and their carers; a process evaluation.

Objectives: Research shows that carers of people with dementia experience worse physical and psychological functioning than non-caregivers or than caregivers of people with a different chronic illness. This study investigated the implementation of two new e-health interventions for carers of people with dementia, Dementelcoach (telephone coaching) and STAR e-learning (online platform to learn about dementia). The interventions were linked to existing Meeting Centres for people with dementia and their carers.Method: We conducted a qualitative multiple case study. Semi-structured interviews regarding experienced influencing factors were conducted with 15 key figures/stakeholders (14 interviews) in eight Meeting Centres during the preparation, starting and continuation phases of the implementation of Dementelcoach and STAR e-learning.Results: Several influencing factors were found on micro level (e.g. PR, training, qualified personnel), meso level (e.g. finances, division of tasks) and macro level (e.g. laws and regulations, national and regional policy) during the different phases of the implementation process. Factors mentioned by most stakeholders were human and financial resources. Another important factor found was the fit between the interventions and region.Conclusion: Insight into facilitators and barriers in the implementation of Dementelcoach and STAR e-learning provided by this study will inform and enable other Meeting Centres to adopt a fitting strategy to implement these interventions in their own centre. This is expected to help disseminate the intervention further, and will result in better-informed and supported carers. This will contribute to the prevention of overburdening in carers and will potentially enable carers to provide better care for their relatives with dementia.

The impact of the implementation of the Dutch combined Meeting Centres Support Programme for family caregivers of people with dementia in Italy, Poland and UK.

Objectives: The MEETINGDEM research project aimed to implement the combined Dutch Meeting Centre Support Programme (MCSP) for community-dwelling people with dementia and caregivers within Italy, Poland and UK and to assess whether comparable benefits were found in these countries as in the Netherlands.Method: Nine pilot Meeting Centres (MCs) participated (Italy-5, Poland-2, UK-2). Effectiveness of MCSP was compared to usual care (UC) on caregiver outcomes measuring competence (SSCQ), mental health (GHQ-12), emotional distress (NPI-Q) and loneliness (UCLA) analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial. Interviews using standardised measures were completed with caregivers.Results: Pre/post data were collected for 93 caregivers receiving MCSP and 74 receiving UC. No statistically significant differences on the outcome measures were found overall. At a country level MC caregivers in Italy showed significant better general mental health (p = 0.04, d = 0.55) and less caregiver distress (p = 0.02, d = 0.62) at post-test than the UC group. Caregiver satisfaction was rated on a sample at 3 months (n = 81) and 6 months (n = 84). The majority of caregivers reported feeling less burdened and more supported by participating in MCSP.Conclusion: The moderate positive effect on sense of competence and the greater mental health benefit for lonely caregivers using the MCSP compared to UC as found in the original Dutch studies were not replicated. However, subject to study limitations, caregivers in Italy using MCSP benefitted more regarding their mental health and emotional distress than caregivers using UC. Further evaluation of the benefits of MCSP within these countries in larger study samples is recommended.

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.

Linking DemenTalent to Meeting Centers for people with dementia and their caregivers: a process analysis into facilitators and barriers in 12 Dutch Meeting Centers.

OBJECTIVES: There have been relatively few interventions on an individual level to support community-dwelling people with dementia to continue to fulfill their potential in society. This study investigated the implementation of DemenTalent, an intervention in which people with dementia become active as volunteers in society based on their talents. The intervention was linked to existing Meeting Centers for people with dementia and their informal caregivers. METHOD: We conducted a qualitative multiple case study. Semi-structured interviews regarding experienced facilitators and barriers were conducted with 22 key figures/stakeholders in 12 Meeting Centers during the preparation, starting and continuation phases of the implementation of DemenTalent. RESULTS: Several influencing factors were found on a micro level (e.g. Public Relations, training, management involvement), meso level (e.g. finances, collaborating with others) and macro level (e.g. laws and regulations, national and regional policy) during the different phases of the implementation process. Factors mentioned by most stakeholders were human and financial resources. Another important factor appeared to be the culture of the region. CONCLUSION: The insight into facilitating and impeding factors in the implementation of DemenTalent provided by this study will inform and enable other Meeting Centers to adopt a fitting strategy to implement DemenTalent in their own center. This is expected to help disseminate the intervention further, giving more people with dementia the chance to fulfill their potential, find a meaningful and pleasant way of spending their time, and actively participate in society. This will contribute to a more inclusive society and less stigmatization of people with dementia.

Self-management and social participation in community-dwelling people with mild dementia: a review of measuring instruments.

BACKGROUND: In order to evaluate interventions promoting social health in people with dementia it is essential to have reliable and valid measures. The present review aims to provide an overview of available instruments for the assessment of two domains of social health in community-dwelling people with mild dementia, i.e., the ability to manage life with some degree of independence (self-management) and participation in social activities. METHODS: An electronic search was conducted in the following databases: PubMed, CINAHL, and PsycINFO. Characteristics of the instruments, feasibility and psychometric properties of the instruments included are reported on. RESULTS: We identified eight instruments measuring aspects of self-management and three instruments measuring social participation. Validity and reliability of self-management instruments varied between moderate and good. Little information was found on the psychometric properties of the instruments for social participation. In general, feasibility and responsiveness data regarding application in community-dwelling people with dementia were scarce for both types of instruments. CONCLUSIONS: Future research into assessment tools for social health should focus on the development of instruments for self-management that also cover the areas of coping with and adapting to the emotional consequences of the disease; instruments for social participation covering the involvement in social interactions that are experienced as meaningful by the person; and on the psychometric properties and responsiveness of instruments. More attention should also be given to the feasibility (ease of use) of these instruments for people with mild dementia, professionals, and researchers.

Recovery from burden: informal caregiver profiles that predict treatment success.

ABSTRACTBackground:Neuropsychiatric symptoms (NPI) of dementia are important determinants of caregiver burden, while caregiver coping styles and competences can relieve burden. Caregivers differ in coping with the demands made on them and in experienced burden. What changes in caregivers explain recovery from burden, and which caregiver characteristics predict recovery from burden over time, and does treatment make a difference? METHODS: This study into recovery from burden was a secondary analysis of data collected in a formerly conducted randomized controlled trial (RCT) on the integrated reactivation and rehabilitation (IRR) programme in a psychiatric-skilled nursing home, compared to usual care (UC; i.e. day care, assisted living arrangements, and nursing home wards). For this secondary analysis, longitudinal data on persons with dementia and caregivers were used from baseline (T1), end of treatment (T2), and at nine months (T3). RESULTS: Caregivers with an improved sense of competence (SCS) who care for persons with dementia with a decreased severity of NPI have the highest chance of recovering from burden (CSI). Caregivers with a tendency to feel involved with others and sympathize with others (affiliation, ICL-R) have a slightly lower probability of improvement with respect to their sense of competence in the short term. The number of improved caregivers was higher in IRR than UC. CONCLUSION: Recovery depends on both an improved sense of competence and a decreased severity of NPI. Combined interventions that address both NPI and focus on enhancing caregiver's sense of competence have added value when it comes to decreasing caregiver burden.

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.