Promoting meaningful activities by occupational therapy in elderly care in Belgium: the ProMOTE intervention.

BACKGROUND: Older people want to age in place. Despite advancing functional limitations and their desire of aging in place, they are not always faithful to therapy that maintains independence and promotes safety. Occupational therapists can facilitate aging in place. Occupational therapy is defined as the therapeutic use of everyday life occupations with persons, groups, or populations for the purpose of enhancing or enabling participation. AIM: To describe the content a high-adherence-to-therapy and evidence-based occupational therapy intervention to optimize functional performance and social participation of home-based physically frail older adults and wellbeing of their informal caregiver, and the research activities undertaken to design this intervention. METHODS: A roadmap was created to develop the occupational therapy intervention. This roadmap is based on the Medical Research Council (MRC) framework and is supplemented with elements of the Intervention Mapping approach. The TIDieR checklist is applied to describe the intervention in detail. A systematic review and two qualitative studies substantiated the content of the intervention scientifically. RESULTS: The application of the first two phases of the MRC framework resulted in the ProMOTE intervention (Promoting Meaningful activities by Occupational Therapy in Elderly). The ProMOTE intervention is a high-adherence-to-therapy occupational therapy intervention that consists of six steps and describes in detail the evidence-based components that are required to obtain an operational intervention for occupational therapy practice. CONCLUSION: This study transparently reflects on the process of a high-quality occupational therapy intervention to optimize the functional performance and social participation of the home-based physically frail older adult and describes the ProMOTE intervention in detail. The ProMOTE intervention contributes to safely aging in place and to maintaining social participation. The designed intervention goes beyond a description of the 'what'. The added value lies in the interweaving of the 'why' and 'how'. By describing the 'how', our study makes the concept of 'therapeutic use-of-self' operational throughout the six steps of the occupational therapy intervention. A further rigorous study of the effect of the ProMOTE intervention on adherence, functional performance and social participation is recommended based to facilitate the implementation of this intervention on a national level in Belgium.

Effectiveness of an outpatient rehabilitation programme in patients with neuralgic amyotrophy and scapular dyskinesia: a randomised controlled trial.

BACKGROUND: Neuralgic amyotrophy (NA) is an acute inflammation of nerves within the brachial plexus territory leading to severe pain and multifocal paresis resulting in >60% of patients having residual complaints and functional limitations correlated with scapular dyskinesia. Our primary aim was to compare the effects of multidisciplinary rehabilitation (MR), focused on motor relearning to improve scapular dyskinesia and self-management strategies for reducing pain and fatigue, with usual care (UC) on shoulder, arm and hand functional capability in patients with NA. METHODS: In a non-blinded randomised controlled trial (RCT), patients with NA (aged≥18 years, scapular dyskinesia, >8 weeks after onset) were randomised to either an MR or an UC group. MR consisted of a diagnostic multidisciplinary consultation and eight sessions of physical and occupational therapy. Primary outcome was functional capability of the shoulder, arm and hand assessed with the Shoulder Rating Questionnaire-Dutch Language Version (SRQ-DLV). RESULTS: We included 47 patients with NA; due to drop-out, there were 22 participants in MR and 15 in UC for primary analysis. The mean group difference adjusted for sex, age and SRQ-DLV baseline score was 8.60 (95%CI: 0.26 to 16.94, p=0.044). The proportion attaining a minimal clinically relevant SRQ-DLV improvement (≥12) was larger for the MR group (59%) than the UC group (33%) with a number needed to treat of 4. CONCLUSION: This RCT shows that an MR programme focused on motor relearning to improve scapular dyskinesia, combined with self-management strategies for reducing pain and fatigue, shows more beneficial effects on shoulder, arm and hand functional capability than UC in patients with NA. TRIAL REGISTRATION NUMBER: NCT03441347.

Supporting Resilience of Older Adults with Cognitive Decline Requires a Multi-Level System Approach.

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.

The willingness and barriers to collaborate in the care of frail older adults: perspectives of primary care professionals.

BACKGROUND: This study investigated the perspectives of primary care professionals, in particular general practitioners, registered nurses, physiotherapists and occupational therapists, on inter-professional collaboration, the barriers and the facilitators they perceive in the care of the frail older population. METHODS: We conducted a qualitative study. In-depth interviews with healthcare professionals were performed, using open-ended questions about their perceptions on the care of frail older adults and inter-professional collaboration. Data was analyzed following the Basic Logical Model of Abduction and Creswell's coding method. RESULTS: Healthcare professionals indicated that when they explored problems complementary to the reasons for older people to contact a healthcare professional, these additional problems often seemed to be the main problem. They also stated that there was too little inter-professional collaboration in the care of complex chronic issues and lack of a shared vision on collaboration. Collaboration is still limited too much to contacting established professions. Health information technology can support both, inter-professional collaboration and working on an evidence-based manner. It can also be a facilitator to inform patients. The availability and use of health information technology differs between the professions. Success factors and barriers for sustainable collaboration were identified on several levels, namely innovation, individual, professional, patient, social context, context of the organization, economic and political context. CONCLUSIONS: Our study shed light on the willingness and barriers in collaboration of healthcare professionals in primary care for older adults. There is little inter-professional collaboration, despite the willingness of the healthcare professionals to collaborate.

What matters in development and sustainment of community dementia friendly initiatives and why? A realist multiple case study.

BACKGROUND: Dementia friendly communities (DFCs) are seen as key to participation of people with dementia and carers. Dementia-friendly initiatives (DFI) are important building blocks for the growth of DFCs. Therefore, it is essential to understand how DFIs are developed and sustained to secure the growth of DFCs. This study identifies contextual factors and mechanisms that influence the development and sustainment of Dutch DFIs. It also explains how these contextual factors and mechanisms are interrelated and the outcomes to which they lead. METHODS: Mixed methods, namely interviews, observations, documentation and focus groups, were used for this realist multiple case study. Participants were professionals (n = 46), volunteers (n = 20), people with dementia (n = 1) and carers (n = 2) who were involved in development and sustainment of DFIs in four Dutch DFCs. RESULTS: This study revealed three middle-range program theories as final outcomes: development of a support base, collaboration, and participation in DFIs by people with dementia and carers. These theories address institutional, organisational, interpersonal and individual levels in the community that are essential in development and sustainment of DFIs. CONCLUSIONS: The development and sustainment of DFIs requires the development of a support base, collaboration, and participation in DFIs by people with dementia and their carers.

Implementation of the Community Occupational Therapy in Dementia program in Italy (COTiD-IT): qualitative survey to identify barriers and facilitators in implementation.

BACKGROUND: Community Occupational Therapy in Dementia in Italy (COTID-IT) is a feasible and effective treatment that aims improving the quality of life and well-being of people with dementia and caregivers. The implementation of the program in the national context has not been studied yet. AIM: The objective of this study is to identify barriers and facilitators in the Italian implementation of the program. METHODS: We designed a quantitative cross-sectional survey. A questionnaire was developed to collect descriptive data regarding the respondents, the perceived barriers and facilitators regarding the application of COTiD and possible actions to promote the implementation process. RESULTS: The questionnaire was sent to all 90 Italian OTs trained in the use of COTiD-IT from 2013 to 2020. 50 people responded (61%). Barriers to the implementation of the COTID-IT included lack of knowledge about Occupational Therapy and the COTID-IT program by other health professionals. In addition, the scarcity of economic funds invested in home rehabilitation is experienced as another significant barrier. Facilitators were found to be the presence of an interprofessional team interested in the COTID-IT program and occupational therapy and the fact that COTID-IT is supported by scientific evidence. The creation of national and regional inter professional education and support groups, the availability of online resources are seen as opportunities to better implement the COTID-IT program. CONCLUSIONS: Implementation of psychosocial interventions is complex. OTs in Italy should be increasingly included within health policies and care programs of people with dementia to promote the use of COTID-IT. Further studies are needed to detail the policy and methodological actions that OTs should take in the future to disseminate and consolidate this intervention.

Perceive, Recall, Plan and Perform (PRPP)-Assessment Based on Parent-Provided Videos of Children with Mitochondrial Disorder: Action Design Research on Implementation Challenges.

AIMS: Performing the Perceive, Recall, Plan and Perform (PRPP)-Assessment, using video material of everyday life, seems sensible to lower the patient burden, enhance ecological validity, and provide care at a distance. However, receipt of adequate video material is not self-evident and assessing videos can be challenging. Therefore, this study aims to optimize the process of gaining video material and to optimize the PRPP-Assessment based on parent-provided videos. METHODS: An action design research method was used, focusing on implementation of the PRPP-Assessment based on parent-provided videos within the care of children with a mitochondrial disorder or similar symptoms. RESULTS: Five cycles were conducted. To receive input, the cycles used videos of nine children performing activities, written feedback, and semi-structured interviews and focus groups comprising parents (n = 13), a teacher (n = 1), occupational therapists (n = 16), and other professionals (n = 2) . This led to successful implementation of the PRPP-Assessment. General lessons were learned on (1) instructing parents; (2) handling video material; (3) PRPP-Assessment based on parent-provided videos; and (4) PRPP-Assessment of children (with limited functional abilities). CONCLUSIONS: Lessons learned should be implemented in practice and are incorporated into a manual to guide the implementation of video-based observations with PRPP-Assessment in practice.

Tailored interviewing to uncover the perspectives of children with multiple disabilities on daily activities: A qualitative analyses of interview methods and interviewer skills.

INTRODUCTION: Uncovering the perspective of children with multiple disabilities is important in health care to enable person-centred health care. For occupational therapists, uncovering the child perspective on meaningful activities is necessary to set appropriate goals for treatment. It is not always evident that children with multiple disabilities can express themselves in an interview. The interviewer should adapt his communication to the child. In literature, alternative communication is widely studied, but a clear algorithm for deciding what to use to successfully gain insight into the child perspective is missing. This study aims to identify helpful interview techniques and interviewer skills and how they can be used to effectively uncover the perspective of children. METHODS: Videos of nine interviews with children with a mitochondrial disorder, conducted by an occupational therapist, were analysed by five researchers. The interviews were analysed to see how well the interviewee had obtained the child's perspectives followed by observation of communicative abilities of the child and the types of questions the interviewer asked. A qualitative directed content analysis of the semi-structured interviews followed. FINDINGS: An interview pattern was observed in the children's communication leading to six successful interviews. Children communicated verbally on four different levels and also used non-verbal communication. The interviewer used five types of questions, which varied between and within the children. The content analysis resulted in two themes: parental influences and interviewer skills. CONCLUSION: Results show the importance of matching the type of questions to the verbal communication level of the child and revealed several interviewer skills and techniques. An overview to guide tailor-made interviewing is presented. The interviewer has a major role in successful interviewing and thus in enabling the inclusion of the child perspective in research and care.

Using PRPP-Assessment for measuring change in everyday activities by home-based videos: An exploratory case series study in children with multiple disabilities.

BACKGROUND: Currently, paediatric health care aims to use a child-centred tailor-made approach. In order to design tailored occupational therapy, the implementation of personalised occupation-based measurements that guide and evaluate goal setting and are responsive to change is necessary. PURPOSE: Primarily, this study explored the potential of the Perceive, Recall, Plan, and Perform (PRPP) assessment to measure the change in the performance of children with multiple disabilities. As a secondary evaluation, the feasibility of the PRPP-Intervention in a home-based program to enable activities was described. The overall aim is to show the potential of the PRPP-Assessment as an outcome measure to use as a base for designing tailor-made person-centred care. METHODS: An exploratory longitudinal multiple case series mixed-methods design was used. The PRPP-Assessment, scored by multiple raters, was conducted based on parent-provided videos. The assessed activities were chosen by the child and/or parents. Responsiveness was evaluated by hypotheses formulated a priori and by comparing measured change with change on concurrent measures: Goal Attainment Scaling (GAS) and Canadian Occupational Performance Measure (COPM). Over a 6-week period, children and their parents (or caregivers) participated in an online home-based video coaching program where parents were coached in the implementation of the training, based on the PRPP-Intervention, by paediatric occupational therapists on a weekly basis. The feasibility of the intervention was explored using semi-structured interviews with children, parents, and the treating occupational therapists and was analysed by directed content analysis. RESULTS: Three out of 17 eligible children agreed to participate and completed post-intervention measurement, of which two completed the intervention. Quantitative results showed that eight out of nine activities improved on the PRPP-Assessment and the COPM, and nine improved on the GAS. In total, 13 out of 15 hypotheses for responsiveness were accepted. Participants experienced the intervention as successful and acceptable. Facilitators and concerns over demand, implementation, practicality, integration, and adaptation were shared. CONCLUSION: The PRPP-Assessment showed the potential to measure change in a heterogeneous group of children. The results indicated a positive tendency for the intervention and also provide directions for further development.

How do community based dementia friendly initiatives work for people with dementia and their caregivers, and why? A rapid realist review.

OBJECTIVES: To describe and explain the outcomes of community dementia friendly initiatives (DFIs) for people with dementia and their caregivers to inform the development and tailoring of DFIs. METHODS: Literature searches on DFIs were performed through two systematic online database searches of PubMed, Embase, ASSIA, CINAHL and Google scholar. Papers were only included if they evaluated outcomes using empirical data from people with dementia or caregivers. Data collection and analysis were guided by the categorization in the DEM-FACT taxonomy and RAMESES guidelines for realist reviews. RESULTS: Of 7154 records identified, 22 papers were included with qualitative, mixed method and quantitative study designs. The synthesis led to a description of programme theories addressing caring, stimulating and activating communities. Outcomes for people with dementia and caregivers included having contact with others, enjoyment and decrease of stress and, lastly, support. This synthesis also indicated how people with dementia participated in a specific role in DFIs, such as patient, team member or active citizen. CONCLUSIONS: DFIs generate different outcomes for people with dementia and caregivers, depending on the kind of initiative and the specific role for people with dementia. These findings could be a catalyst for initiation and further development of DFIs in a dementia friendly community (DFC). This draws attention to the multiple aspects of DFCs and supports reflection on their essential principles.

Family caregivers' perspectives on their interaction and relationship with people living with dementia in a nursing home: a qualitative study.

BACKGROUND: Social interactions are important for people living with dementia in a nursing home. However, not much is known about interactions and relationships between residents and family caregivers and related experiences of family caregivers. We aim to advance the knowledge on how family caregivers interact with people living with dementia in a nursing home and how they maintain or redesign a meaningful connection. METHODS: Qualitative research using interviews with family caregivers (n = 31) to explore perspectives on their interaction and relationship with the person living with dementia. Interviews were held during the reopening of nursing homes after the first COVID-19 lockdown in the Netherlands. In this situation, family caregivers became more aware of their interaction and relationship with the resident, which provided a unique opportunity to reflect on this. The interviews explored the interaction and relationship in a broad sense, not specifically for the COVID-19 situation. Thematic analysis was performed to analyze the data. RESULTS: We were able to identify three key themes reflecting the experiences of family caregivers: (1) changes in the interaction and relationship, (2) strategies to promote connection, and (3) appreciation of the interaction and relationship. From the viewpoint of family caregivers, the interaction and relationship are important for both the resident living with dementia and for themselves, and family caregivers have different strategies for establishing a meaningful connection. Nevertheless, some appear to experience difficulties with constructing such a connection with the resident. CONCLUSIONS: Our results provide a basis for supporting family caregivers in perceiving and establishing mutuality and reciprocity so that they can experience togetherness.

Empowering interventions for people living with dementia: A European survey.

AIMS: We aim to identify existing empowerment interventions for people living with dementia and to explore which used interventions and projects are considered empowering and why. DESIGN: This was an online survey. METHODS: We conducted an online survey between May 2018 and July 2018 amongst professionals interested in dementia care in Europe. Interventions were clustered within the ecological model for health promotion. Reasons from respondents as to why they considered interventions to be empowering were analysed and structured according to a recently developed conceptual framework of empowerment for people living with dementia. RESULTS: Seventy-three respondents from 23 countries together mentioned 98 interventions or projects, of which 90 were unique. Interventions focused on the (inter)personal (n = 54), organizational (n = 15), communal (n = 6) and societal (n = 15) levels. A broad range of interventions were considered empowering, but no interventions were specifically developed for, nor aimed at, empowerment. Reasons as to why respondents considered these interventions as empowering fitted the framework's domains. CONCLUSION: This European survey provides insights into interventions considered empowering for people living with dementia. An important step that needs to be taken is to develop and test interventions that specifically aim to promote empowerment for people living with dementia. IMPACT: Empowerment may encourage people with dementia to live the life they choose, and focus on what is possible, instead of what is no longer possible. Many interventions are considered as empowering for people living with dementia, however no interventions could be identified that were specifically developed for or aimed at empowerment. This study shows that for promoting empowerment, it is necessary to develop and test interventions that specifically aim for empowerment, do this in collaboration with relevant stakeholders, and in this way support people living with dementia to live according to their competencies, talents and wishes.

Community Occupational Therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID]) study: A single-blind, randomised controlled trial.

BACKGROUND: We aimed to estimate the clinical effectiveness of Community Occupational Therapy for people with dementia and family carers-UK version (Community Occupational Therapy in Dementia-UK version [COTiD-UK]) relative to treatment as usual (TAU). We hypothesised that COTiD-UK would improve the ability of people with dementia to perform activities of daily living (ADL), and family carers' sense of competence, compared with TAU. METHODS AND FINDINGS: The study design was a multicentre, 2-arm, parallel-group, assessor-masked, individually randomised controlled trial (RCT) with internal pilot. It was conducted in 15 sites across England from September 2014 to January 2018. People with a diagnosis of mild to moderate dementia living in their own home were recruited in pairs with a family carer who provided domestic or personal support for at least 4 hours per week. Pairs were randomised to either receive COTiD-UK, which comprised 10 hours of occupational therapy delivered over 10 weeks in the person with dementia's home or TAU, which comprised the usual local service provision that may or may not include standard occupational therapy. The primary outcome was the Bristol Activities of Daily Living Scale (BADLS) score at 26 weeks. Secondary outcomes for the person with dementia included the following: the BADLS scores at 52 and 78 weeks, cognition, quality of life, and mood; and for the family carer: sense of competence and mood; plus the number of social contacts and leisure activities for both partners. Participants were analysed by treatment allocated. A total of 468 pairs were recruited: people with dementia ranged from 55 to 97 years with a mean age of 78.6 and family carers ranged from 29 to 94 with a mean of 69.1 years. Of the people with dementia, 74.8% were married and 19.2% lived alone. Of the family carers, 72.6% were spouses, and 22.2% were adult children. On randomisation, 249 pairs were assigned to COTiD-UK (62% people with dementia and 23% carers were male) and 219 to TAU (52% people with dementia and 32% carers were male). At the 26 weeks follow-up, data were available for 364 pairs (77.8%). The BADLS score at 26 weeks did not differ significantly between groups (adjusted mean difference estimate 0.35, 95% CI -0.81 to 1.51; p = 0.55). Secondary outcomes did not differ between the groups. In total, 91% of the activity-based goals set by the pairs taking part in the COTiD-UK intervention were fully or partially achieved by the final COTiD-UK session. Study limitations include the following: Intervention fidelity was moderate but varied across and within sites, and the reliance on primarily proxy data focused on measuring the level of functional or cognitive impairment which may not truly reflect the actual performance and views of the person living with dementia. CONCLUSIONS: Providing community occupational therapy as delivered in this study did not improve ADL performance, cognition, quality of life, or mood in people with dementia nor sense of competence or mood in family carers. Future research should consider measuring person-centred outcomes that are more meaningful and closely aligned to participants' priorities, such as goal achievement or the quantity and quality of activity engagement and participation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10748953.

Perspectives of older adults with a chronic condition on functioning, social participation and health: a qualitative study.

BACKGROUND: Problems with mobility, functioning and social participation make living independently difficult for frail older adults. To continue living independently, therapy adherence is a prerequisite. The causes for non-adherence among older adults are multiple and complex, which is why insight into older adults' perspectives regarding their functioning is an essential factor to increase therapy adherence. This study investigates the perspectives of older adults on their functioning, social participation and health, and the factors influencing these elements. METHODS: We conducted a qualitative study on the older adult's perceived functioning, social participation and health. Fourteen home-dwelling older adults suffering from chronic health issues were purposively selected. Semi-structured interviews were conducted with open-ended questions. Data were analysed following the Basic Logical Model of Abduction and Creswell's coding method. RESULTS: Assistive devices, the older adult's dwelling and living environment, professional and informal support, and medication are perceived as important determinants for retaining functioning and social participation. Attitude, social influence and personal effectiveness were found to influence whether a person performs or participates in an activity. A person's attitude is related to the significance the activity has to that person, the activity's importance, personal wellbeing, the person's values, and their desire for autonomy. Peers and children have a social influence on the level of activity of the older person. Traditions, in particular religious activities, along with personal effectiveness are motivating factors determining whether a person performs or participates in an activity. Personal effectiveness is linked to the person's belief in their personal competencies and to the relationship between effort and result. Finally, it appears that the type of coping strategy the older adult adopts, has an influence on their behavior. The participating older adults often used remarkable problem-focused strategies, which had a positive effect on their level of autonomy. CONCLUSIONS: Older adults have identified barriers and facilitators that influence their level of functioning and social participation. These findings help to create a framework for maintaining and increasing therapy adherence, which may be helpful in facilitating occupational therapists and other healthcare professionals to detect determinants of therapy adherence.

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.

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.

A pilot study of community-based occupational therapy for persons with dementia (COTID-IT Program) and their caregivers: evidence for applicability in Italy.

OBJECTIVE: To assess the applicability in Italy of a community-based occupational therapy program (COTID) on occupational performance of persons with dementia and their caregivers. METHODS: Prospective cohort study: twenty-seven older persons with mild-to-moderate dementia living in the community and their primary caregivers were included. Ten sessions of occupational therapy over 5 weeks were delivered. Main outcome measures were the level of performance and satisfaction perceived by people with dementia during the participation in significant activities assessed with the Canadian Occupational Performance Measure (COPM); caregiver burden assessed with the sense of competence questionnaire (SCQ). RESULTS: The average age of the population was 80.59 ± 8.46 in persons with dementia and 57.78 ± 13.47 in the caregivers. There was a significant improvement in the caregivers' burden in the SCQ (pre treatment 77.19 ± 13.27 vs 82.56 ± 12.57 post treatment; p = .005). Persons with dementia showed a significant improvement in the COPM performance (4.56 ± 1.44 vs 6.68 ± 1.59; p = .000) as well as in the satisfaction (5.08 ± 1.84 vs 7.04 ± 1.71; p = .000). No significant variations were registered in the overall cognitive functions, behavioral and psychological symptoms of dementia, daily functioning, depressive symptoms, perceived quality of life and global health of people with dementia. There was also no difference in the quality of life, global health, depression or burden in the caregivers. CONCLUSIONS: The study shows that the COTID program is applicable in the Italian context. The findings suggest a positive effect on patients and caregivers providing a preliminary support for the program implementation at a national level.

Better self-management and meaningful activities thanks to tablets? Development of a person-centered program to support people with mild dementia and their carers through use of hand-held touch screen devices.

BACKGROUND: To offer good support to people with dementia and their carers in an aging and Internet society the deployment of hand-held touch screen devices, better known as tablets, and its applications (apps) can be viable and desirable. However, at the moment it is not clear which apps are usable for supporting people with dementia in daily life. Also, little is known about how people with dementia can be coached to learn to use a tablet and its apps. METHODS: A person-centered program, with tools and training, will be developed that aims to support people with mild dementia and their (in)formal carers in how to use the tablet for self-management and meaningful activities. The program will be developed in accordance with the Medical Research Council's (MRC) framework for developing and evaluating complex interventions and the study will cover the following phases: a preclinical or theoretical (0) phase; a modeling phase (I) and the exploratory trial phase (II). The users (people with dementia and their carers) will be involved intensively during all these phases, by means of individual interviews, workshops, focus groups, and case studies. DISCUSSION: The iterative process inherent to this framework makes it possible to develop a user-oriented intervention, in this case a person-centered program, for the use of tablets in dementia care. Preparatory work will be done to perform a methodologically sound randomized controlled trial (RCT) in the near future, which aims to investigate the contribution of this person-centered program for tablet use to the quality of life of people with dementia and their carers.

A process evaluation of a home-based occupational therapy intervention for Parkinson's patients and their caregivers performed alongside a randomized controlled trial.

OBJECTIVE: To evaluate fidelity, treatment enactment and the experiences of an occupational therapy intervention in Parkinson's disease, to identify factors that affect intervention delivery and benefits. DESIGN: Mixed methods alongside a randomized controlled trial. SUBJECTS: These include 124 home-dwelling Parkinson's disease patients and their primary caregivers (recipients), and 18 occupational therapists. INTERVENTION: Ten-week home-based intervention according to the Dutch guidelines for occupational therapy in Parkinson's disease. MAIN MEASURES: Data were collected on intervention dose, protocol process, content of treatment (fidelity), offered and performed strategies (treatment enactment), and recipients' experiences. Therapists' experiences were collected through case note analyses and focus group interviews. RESULTS: Mean intervention dose was 9.3 (SD 2.3) hours. Mean protocol process adherence was high (93%; SD 9%), however the intervention did not (fully) address the goal for 268 of 617 treatment goals. Frequencies of offered and performed strategies appeared similar, apart from 'using other tools and materials' which showed a drop from 279 advised to 149 used. The recipients were satisfied overall with the intervention (mean score 8 out of 10). The therapists noted positive or negative influencing factors on both process and benefits: the research context, the socio-political healthcare context, the recipients' personal and contextual factors, and the therapists' competence. CONCLUSION: We found some prerequisite factors in equipment provision and available dose important for treatment delivery. Other elicited factors related to, or affected, the required professional competencies and tools to tailor interventions to the complexity of interacting personal and contextual factors of patients and caregivers.