Costs of care trajectories of people with dementia compared with matched controls. Longitudinal analysis of linked health and administrative data.

OBJECTIVES: To provide insight into the health and social care costs during the disease trajectory in persons with dementia and the impact of institutionalization and death on healthcare costs compared with matched persons without dementia. METHODS: Electronic health record data from family physicians were linked with national administrative databases to estimate costs of primary care, medication, secondary care, mental care, home care and institutional care for people with dementia and matched persons from the year before the recorded dementia diagnosis until death or a maximum of 4 years after the diagnosis. RESULTS: Total mean health and social care costs among persons with dementia increased substantially during the disease trajectory, mainly due to institutional care costs. For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia, while for those who are admitted to a long-term care facility, mean health and social care costs are higher for people without dementia than for those with dementia. CONCLUSIONS: The steep rise in health and social care costs across the dementia care trajectory is mainly due to increasing costs for institutional care. For those remaining in the community, home care costs and hospital care costs were the main cost drivers. Future research should adopt a societal perspective to investigate the influence of including social costs.

Similarities and differences in the prevalence and risk factors of suicidal behavior between caregivers and people with dementia: a systematic review.

BACKGROUND: People with dementia and their caregivers are prone to suicidal behaviors due to difficulty adjusting to their initial caregiving role and due to emotional disturbances resulting from deterioration of functioning. The present systematic review (1) explored the prevalence of and risk factors for suicidal behavior and (2) assessed the similarities and differences in the prevalence and risk factors for suicidal behavior between people with dementia and their caregivers. METHODS: A comprehensive literature search for research articles published between 1950 and 2023 was carried out using major databases, such as Google Scholar, Web of Science, PubMed, Scopus, PsycINFO, EMBASE, the Cochrane Library, and Medline. RESULTS: A total of 40 research articles were selected for review. A total of 12 research articles revealed that the prevalence of suicidal behavior among caregivers ranged from 4.7% to 26%. However, the risk of suicidal behavior among people with dementia was inconsistent, as only 17 out of 28 selected studies reported the risk of suicidal behavior among people with dementia. The risk factors associated with suicidal behavior among caregivers of people with dementia could be both self-related and care receiver-related factors, whereas risk factors in people with dementia were self-related factors. Notably, greater cognitive decline, which impairs individuals' ability to carry out complex acts and planning, may lower their suicidal risk. Finally, assessment of the risk of bias indicated that 95% of the selected studies had unclear risk. CONCLUSION: Self-related and care receiver-related factors should be assessed among caregivers of people with dementia to evaluate the risk of suicidal behavior. In addition, we recommend evaluating suicidal risk in people with dementia in the early phase of dementia when cognitive decline is less severe. However, as the majority of the selected studies had unclear risk of bias, future studies with improved methodologies are warranted to confirm our study findings.

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.

'There is always good fortune in misfortune to encourage us in coping with difficulties'-The lived experiences of family caregivers of people with dementia during the COVID-19 outbreak in China: A phenomenological study.

AIM: To describe the lived experiences of family caregivers of individuals with dementia during the coronavirus disease (COVID-19) outbreak in China. DESIGN: This study used a descriptive phenomenological research method. METHODS: Between May and September 2021, semi-structured interviews were conducted with 22 family caregivers of people with dementia. Colaizzi's method was used for manual analysis. RESULTS: Qualitative data revealed an overarching experience of finding 'There is always good fortune in misfortune to encourage us in coping with difficulties'. Three themes emerged: family reactions to the COVID-19 outbreak, feeling supported by multiple resources performing respective functions and resilient adaptation to new situations. CONCLUSION: During the COVID-19 outbreak, family caregivers of people living with dementia in China looked for positive aspects among difficulties and experienced corresponding reactions, social support resources and resilient adapted coping styles. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nurses in China and other countries facing similar pandemic characteristics, cultures or economic development levels, can guide family caregivers to look at family hardships from a positive perspective, develop interventions to rapidly respond to families' reactions after a disaster and help them identify social support resources and form adapted coping styles. IMPACT: We identified the resilience and the positive experiences of Chinese family caregivers of individuals with dementia during the COVID-19 outbreak. The results can inform countries with similar cultures and economic levels, offering measures to support their adaptation to pandemics. REPORTING METHOD: This study followed the COREQ guidelines. PATIENT OR PUBLIC CONTRIBUTION: Family caregivers of people with dementia who met the inclusion criteria and who were interested in sharing their understanding of their experiences, participated in the study.

Preparedness for caregiving among informal caregivers of people with dementia: A scoping review.

INTRODUCTION: Dementia is a global health concern, and informal caregivers often provide care for those affected. Caregiver preparedness is crucial for optimizing quality of life. However, knowledge about the determinants of caregiver preparedness is limited. PURPOSE: The aim of this scoping review was to identify the factors associated with preparedness for caregiving among informal caregivers of people with dementia. METHODOLOGY: The review adhered to the methods from the Joanna Briggs Institute. Studies exploring the preparedness of informal caregivers of people with dementia were included in this review. Data were extracted from studies found in five major databases: PubMed, PsycINFO, Scopus, CINAHL, and Embase. RESULTS: The final review included twenty-three studies. Self-efficacy and confidence, resilience and self-conduct, knowledge, education and training, mutuality, mental health, less caregiving conflict, and mindfulness were associated with caregiver preparedness. CONCLUSION: This review identified a significant research gap in preparedness among caregivers of people with dementia. More research is essential to understand the factors associated with caregivers' preparedness. Recognizing these elements can inform tailored interventions, assisting informal caregivers in their caregiving transition and journey.

Critical Analysis of the Scales Assessing Assistance Provided by Family Caregivers.

BACKGROUND: While the literature on caregiver-assessment scales often focuses on the quantitative and psychometric aspects of the scales, we wished to examine the discourse on caregiving, caregivers and care-recipients (particularly, people with dementia) produced by these scales. What discourse does it help to crystallise and naturalise by dint of being used widely, with unresolved ethical and political issues? METHODS: We analysed two well-known scales that are widely used in both research and clinical settings and conceived among others for people with dementia: Zarit and, offering a sharp contrast, the CRA. We performed semantic network analysis using EVOQ software (https://www.evoq.be/) to visualise the links between the terms. RESULTS: Whereas the Zarit scale is entirely built around a view of caregiving and the care-recipient as a burden, the CRA offers a different discourse. Instead of considering the provision of help as an emotional load, the desire to help is highlighted. Rather than considering the care-recipient as a weight, the recognition of his or her contribution to the relationship with the caregiver is suggested. Moreover, the caregiver is presented as a relative who is capable of active strategies in order to cope with the reality of care without becoming exhausted. CONCLUSIONS: The comparison of our two analyses shows the extent to which the scales produce a discourse which needs to be examined before use, given its epistemological, ethical and political significance. Clinicians and researchers need to make choices between the many existing instruments and be able to justify them. Their reasons should include not only the psychometric qualities of the chosen tool, but also the discourse that it underpins, so as to avoid contributing to the promotion of a vision of care and its givers and recipients that would be reductive, moving us further away from a caring society.

A predictive model of carer resilience in dementia family caregiving: A structural equation modelling approach.

OBJECTIVES: This study aimed to investigate the mediating effects of quality of the caregiving relationship and other carer and person with dementia variables in predicting carer resilience over time. METHOD: Carers of people with mild and moderate dementia in community settings completed baseline (n = 176 dyads) and six-month follow-up assessments (n = 139 dyads). Causal mediation analysis was conducted using Pearson Correlation and Structural Equation Modelling (SEM) to examine longitudinal predictors of carer resilience, and the effect of several mediating person with dementia, and carer factors on carer resilience over time. RESULTS: At 6-month follow-up, higher levels of carer resilience were longitudinally correlated with higher ratings of perceived relationship quality by people with dementia (r = 0.53 p ≤ 0.01), and lower levels of emotional distress symptoms by carer's (r = -0.59 p ≤ 0.01). Mediation analyses showed that people with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms (ß = -0.32, p ≤ 0.001) and carer resilience (ß = 0.53, p ≤ 0.001) over time. The final SEM provided a good fit for the data (X 2  = 0.12, p = 0.72, CFI = 1.00, NFI = 0.99, and Root Mean Square Error of Approximation = 0.001). CONCLUSION: Higher ratings of perceived relationship quality by people with dementia, and lower levels of carer emotional distress predicted higher carer resilience at follow-up. People with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms and carer resilience over time. Our findings indicate that interventions aimed at strengthening the caregiving relationship might have a protective long-term effect for carer resilience in dementia caregiving.

Privacy-protecting behaviours of risk detection in people with dementia using videos.

BACKGROUND: People living with dementia often exhibit behavioural and psychological symptoms of dementia that can put their and others' safety at risk. Existing video surveillance systems in long-term care facilities can be used to monitor such behaviours of risk to alert the staff to prevent potential injuries or death in some cases. However, these behaviours of risk events are heterogeneous and infrequent in comparison to normal events. Moreover, analysing raw videos can also raise privacy concerns. PURPOSE: In this paper, we present two novel privacy-protecting video-based anomaly detection approaches to detect behaviours of risks in people with dementia. METHODS: We either extracted body pose information as skeletons or used semantic segmentation masks to replace multiple humans in the scene with their semantic boundaries. Our work differs from most existing approaches for video anomaly detection that focus on appearance-based features, which can put the privacy of a person at risk and is also susceptible to pixel-based noise, including illumination and viewing direction. We used anonymized videos of normal activities to train customized spatio-temporal convolutional autoencoders and identify behaviours of risk as anomalies. RESULTS: We showed our results on a real-world study conducted in a dementia care unit with patients with dementia, containing approximately 21 h of normal activities data for training and 9 h of data containing normal and behaviours of risk events for testing. We compared our approaches with the original RGB videos and obtained a similar area under the receiver operating characteristic curve performance of 0.807 for the skeleton-based approach and 0.823 for the segmentation mask-based approach. CONCLUSIONS: This is one of the first studies to incorporate privacy for the detection of behaviours of risks in people with dementia. Our research opens up new avenues to reduce injuries in long-term care homes, improve the quality of life of residents, and design privacy-aware approaches for people living in the community.

Peer support meeting of people with dementia: a qualitative descriptive analysis of the discussions.

BACKGROUND: Dementia cafés for people with dementia and their caregivers are promoted in national dementia policies. The effect of dementia cafés on people with dementia has been reported through narratives of caregivers who participated the dementia cafés. However, evidence derived from the data, which included only people with dementia, is sparse. The aim of this study is to analyze the narratives of people with dementia in peer support meetings in Tokyo where only people with dementia participate, i.e., caregivers were not present. METHODS: People with dementia and older people with subjective cognitive impairment were recruited in our community-based participatory research centre. Based on the qualitative descriptive approach, we conducted a thematic analysis of the field notes, which was made through ethnographical observation of the meetings. RESULTS: Twenty-five meetings were held from November 2018 to March 2020. The cumulative total number of participants was 196. First, the symptomatic problems related to living with dementia were mentioned, which were collectively named under the overarching category of 'Experience of living with dementia.' Second, questions and solutions to the various symptoms were discussed, which were named the 'Quest of Symptoms.' Third, we noted the narrative that reflected on daily life, feelings, and the life that one has led, which were named 'Life story.' Fourth, we noted narratives of how symptoms have improved and their world has expanded, which were named 'Hope.' Fifth and most importantly, narratives about compassion for people with dementia in the past and future, as well as for people of the same generation, were discussed, which were named 'Compassion.' CONCLUSIONS: The lived experiences of people with dementia were revealed. Participants noted they were not just being cared for but exchanging information and exploring the symptoms; in other words, they were resilient. Furthermore, more positive aspects concerning living with dementia were discussed, such as 'Hope' and 'Compassion.' Further research concerning the discourse of people around the participants is necessary to evaluate the situation from multiple perspectives.

Effects of technology-assisted interventions for people with dementia: A systematic review and meta-analysis.

PURPOSE: The use of technology-assisted interventions in dementia care contributes to increased communication, reduced burden on the caregivers, improved health outcomes, and improved expense management. Technology-assisted interventions can be provided remotely to monitor, improve, and enable home care, benefiting the health of both patients and caregivers. Despite increasing use, the effectiveness of technology-assisted interventions for dementia care remains uncertain, with studies reporting inconclusive findings subject to interpretation. Therefore, the current study investigated the available evidence to explore the efficacy of technology-assisted interventions for people with dementia. DESIGN: Systematic review and meta-analysis. METHODS: The study was preregistered with the PROSPERO international prospective register of systematic reviews using a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)-guided protocol. The primary search was conducted in eight databases from database inception to January 29, 2022. Using a random-effects model, the standardized mean differences (SMDs) with 95% confidence intervals (CIs) were synthesized to obtain pooled effect sizes (using Stata 16.0). The updated Cochrane Risk of Bias 2 tool (RoB-2) was used to evaluate the methodological quality of the studies. FINDINGS: A pooled analysis of 12 trials, including 584 people with dementia, showed more improvement associated with technology-assisted interventions compared with standard care, including in the domains of cognitive function (SMD = 0.39; 95% CI: 0.14 to 0.64; p < 0.001) and depression (SMD = -0.75; 95% CI: -1.33 to -0.17; p = 0.01). However, no significant effects were observed for activities of daily living (ADL) or quality of life. CONCLUSION: Technology-assisted interventions appear to improve cognitive function and reduce depression in people with dementia compared with standard care. CLINICAL RELEVANCE: This study may be used to demonstrate that interventions incorporating many modalities or technologies can be used to enhance dementia care, which may improve favorable outcomes when using technology-assisted interventions to remotely initiate appropriate activities for people with dementia. Because technology allows for simultaneous communication and access to shared multimedia, it removes environmental constraints and allows treatment to be administered remotely.

Practice effect and test-retest reliability of the Mini-Mental State Examination-2 in people with dementia.

BACKGROUND: The Mini-Mental State Examination-Second Edition (MMSE-2) consists of three visions: a brief version (MMSE-2:BV), a standard version (MMSE-2:SV), and an expanded version (MMSE-2: EV). Each version was equipped with alternate forms (blue and red). There was a lack of evidence on the practice effect and test-retest reliability of the three versions of the MMSE-2, limiting its utility in both clinical and research settings. The purpose of this study was to examine the practice effect and test-retest reliability of the MMSE-2 in people with dementia. METHODS: One hundred and twenty participants were enrolled, of which 60 were administered with the blue form twice (i.e., the same-form group, [SF group]) and 60 were administered with the blue form first and then the red form (alternate-form group, [AF group]). The practice effect was evaluated using a paired t-test and Cohen's d. The test-retest reliability was examined using the intraclass correlation coefficient (ICC). RESULTS: For the practice effects, in the SF group, no statistically significant differences were found for the MMSE-2:BV and MMSE-2: EV total scores and eight subtests (p = 0.061-1.000), except for the MMSE-2:SV total score (p = 0.029). In the AF group, no statistically significant differences were found for all three versions of the total scores and subtests (p = 0.106-1.000), except for the visual-constructional ability subtest (p = 0.010). Cohen's d of all three versions' total scores and subtests were 0.00-0.20 and 0.00-0.26 for SF group and AF group, respectively. For the test-retest reliability, ICC values for all three versions and eight subtests in SF and AF groups were 0.60-0.93 and 0.56-0.93, respectively. CONCLUSION: Our results demonstrated that the practice effect could be minimized when alternate forms of the MMSE-2 were used. The MMSE-2 had good to excellent test-retest reliability, except for three subtests (i.e., visual-constructional ability, registration, and recall). Caution should be taken when interpreting the results of visual-constructional ability, registration, and recall subtests of the MMSE-2.

Person-centered dementia care during COVID-19: a qualitative case study of impact on and collaborations between caregivers.

BACKGROUND: Little is known about the actual impact of COVID-19 on caregivers of older people with dementia and resultant collaborations among them to provide continued person-centered care while undertaking infection control measures. In this study, we explored the impact of providing dementia care during COVID-19 on caregivers involved in dementia care. METHODS: This is an exploratory qualitative case study. The participants were family members living with older people with dementia, care managers, and the medical and long-term care facility staff. Data were collected from 46 caregivers via face-to-face and semi-structured interviews and analyzed using thematic analysis. RESULTS: The interviews identified 22 themes related to the impact of COVID-19 on different positions of the caregivers involved in dementia care and their collaboration, and we categorized them into six categories. The core themes were "re-acknowledgement of care priorities" and "rebuilding of relationships." When caregivers' perceptions were aligned in the decision-making processes regarding care priorities, "reaffirmation of trust" and "strengthening of intimate relationships" emerged as positive changes in their relationships. Furthermore, the differences in the ability of each caregiver to access and select correct and appropriate information about COVID-19, and the extent of infection spread in the region were related to "anxiety during COVID-19 pandemic" and caused a "gap in perception" regarding infection control. CONCLUSIONS: The present study clarified that the process of aligning the perceptions of caregivers to the objectives and priorities of care for older people with dementia during COVID-19 pandemic strengthened the relationships among caregivers. The findings of this study are useful for caregivers involved in person-centered dementia care.

Including formal and informal caregivers in the development of Play Intervention for Dementia: a qualitative study.

BACKGROUND: Play Intervention for Dementia is a practice initiative using play to help people living with dementia (PWD) experience engagements, autonomy, and cognitive stimulation. This program was developed under a participatory paradigm, with extensive contribution from formal and informal caregivers. This article describes how caregivers contributed to the practice principles, materials, and assessment during the development phase of Play Intervention for Dementia through community-based participatory research (CBPR). METHODS: Three service supervisors, 16 formal caregivers and 14 informal caregivers from the community participated in this study. Based on CBPR, the study progressed in a reflexive, iterative and collaborative way. Data were collected from diverse sources, including practice journals, observation notes and reflexive focus group interviews. Two trained qualitative researchers conducted thematic analysis on the data collected, with focus on practical skills, outcomes, and caregivers' general experience during the intervention. RESULTS: The therapeutic and liberating power of play was thoroughly discussed by the caregivers. They considered play as an innovative way to understand, engage, and connect with the PWD. Also, improvement in energy level, motivation and communicative capacity was observed among the PWD. The researcher and caregivers collaboratively refined and designed the protocol of Play Intervention for Dementia, adding localized principles and games to the original design. CONCLUSION: Caregivers found play to be a meaningful way to engage with PWD, as it provided an equal platform for them. The intervention also enabled them to reflect upon ageing and disease at a deeper level. Caregivers have contributed significantly to the refinement and contextualisation of the intervention. The efficiency of the refined program should be further tested on a larger scale.

Telephone-based aftercare groups for family carers of people with dementia - results of the effect evaluation of a randomised controlled trial.

BACKGROUND: The care of people with dementia is associated with enormous stress and, in a quarter of cases, leads to depression and anxiety disorders in the caring relatives. A specially designed inpatient psychosomatic rehabilitation (rehab) programme for family carers of people with dementia has proven to be effective but not sustainable. Therefore, the present study aims to increase the sustainability of the inpatient rehab programme by using thematically structured telephone aftercare group sessions. METHODS: The effectiveness of telephone aftercare groups was investigated in a randomized, controlled, prospective, mixed methods, longitudinal study. The aftercare intervention included social participation in monthly telephone group sessions for 6 months. The primary outcome was increased social participation of family carers, which, like the secondary outcomes (such as quality of life and subjective health), was assessed in written surveys at three or four measurement points. RESULTS: Complete data from 69 participants from the intervention group and from 72 participants from the control group could be evaluated. A small-sized reduction in restrictions on social participation was observed in the intervention group, whereas the reduction in the control group was negligible. The repeated-measures analysis of variance (ANOVA) showed sustained effects on the secondary outcomes, such as depression, perceived social support, and the mental health domain of quality of life of family carers, in favour of the intervention group. The results also showed that telephone-based aftercare groups had a rather minor influence on the use of support services. Except for those from family, friends and neighbours, existing support offers were hardly used. CONCLUSION: Telephone aftercare group sessions for carers of people with dementia were not able to increase social participation at the expected magnitude. Nevertheless, the clear effects on selected secondary health-related outcomes and the assessment of the telephone-based group sessions by the participants show that the caring relatives were able to benefit greatly from this aftercare measure. Family carers should be informed more extensively about the corresponding resources and encouraged to use them. Overall, this new aftercare concept can be recommended for implementation, and its use also seems to be target-oriented for other indications. CLINICAL TRIAL REGISTRATION: German Clinical Trials Register: DRKS00013736 , 14/05/2018.

Pain Interventions for people with dementia: a quasi-experimental study.

BACKGROUND: Due to the complexity of the provision of care for people with dementia, pain assessment and management is still considered to be lacking. An optimal way to support frontline staff in providing pain assessment and management for people with dementia living in nursing homes has not yet been identified. The success of supporting interventions seems dependent on contextual factors in the nursing homes. This study, therefore, analyzes the feasibility of a nurse-led training intervention, using repeated on-site case studies, in modifying pain intensity and frequency in people with dementia. METHODS: Using a quasi-experimental design, we undertook a multi-center study of nurse-led training in pain management, with subsequent on-site case studies. Healthcare workers from 3 nursing homes assessed pain in 164 residents with dementia over 147 days. We used mixed-effect growth curve models with spline regression to analyze the data. RESULTS: We found that on-site case studies support frontline staff with pain management and assessment. Repeated reflection in case studies led to significantly longer pain free intervals (from 4.7 at baseline to 37.1 days at second follow-up) and decreased frequency of pain events (OR 0.54 at first follow-up and 0.43 at second follow-up). However no trends regarding pain intensity could be found. Therefore, on-site case studies may be valuable for improving pain frequency and pain-free intervals over time. CONCLUSION: This feasibility study shows the potential of on-site support for frontline nursing home staff. On-site case studies may also affect health outcomes in people with dementia. However, the complexity of dementia care necessitates the management of a broader range of needs. TRIAL REGISTRATION: The study was retrospectively registered on the tenth of January 2017 with the German registry of clinical trials (DRKS00009726).

Strategies to manage cognitive dissonance when experiencing resistiveness to care in people living with dementia: A qualitative study.

AIMS: To explore the experiences of healthcare personnel when they face resistiveness to care in people living with dementia in nursing homes. DESIGN: The study has a qualitative explorative design. METHODS: Three focus group interviews were conducted in June 2019. A total of 16 nurses and other healthcare personnel employed in three different nursing homes participated. A semi-structured interview guide was used during the focus group interviews. Data were transcribed verbatim and analysed using an inductive qualitative content analysis. RESULTS: The analysis generated one overarching category-'Tension when facing resistiveness to care', which describes the discomfort healthcare personnel experienced when confronted with resistiveness to care in people with dementia-and two other categories: 'Attitude change' and 'Changing behaviour', which describes their strategies to reduce and/or manage the discomfort. Four subcategories-'Changing the mindset', Conceptual shift', Stepping back' and 'Not giving up'-described the actions taken by healthcare personnel to manage or reduce their cognitive dissonance. CONCLUSION: The strategies used to manage or reduce cognitive dissonance provide a new understanding of how healthcare personnel choose to approach resistiveness to care in people living with dementia. IMPACT: This study addresses cognitive dissonance, a discomfort experienced by healthcare personnel when facing resistiveness to care from people living with dementia. To reduce their dissonance, the participants employed several strategies, including coercive measures, when providing care. The theory of cognitive dissonance may help explain why healthcare personnel sometimes choose to employ coercive measures while providing care.

Predicting Activity Duration in Smart Sensing Environments Using Synthetic Data and Partial Least Squares Regression: The Case of Dementia Patients.

The accurate recognition of activities is fundamental for following up on the health progress of people with dementia (PwD), thereby supporting subsequent diagnosis and treatments. When monitoring the activities of daily living (ADLs), it is feasible to detect behaviour patterns, parse out the disease evolution, and consequently provide effective and timely assistance. However, this task is affected by uncertainties derived from the differences in smart home configurations and the way in which each person undertakes the ADLs. One adjacent pathway is to train a supervised classification algorithm using large-sized datasets; nonetheless, obtaining real-world data is costly and characterized by a challenging recruiting research process. The resulting activity data is then small and may not capture each person's intrinsic properties. Simulation approaches have risen as an alternative efficient choice, but synthetic data can be significantly dissimilar compared to real data. Hence, this paper proposes the application of Partial Least Squares Regression (PLSR) to approximate the real activity duration of various ADLs based on synthetic observations. First, the real activity duration of each ADL is initially contrasted with the one derived from an intelligent environment simulator. Following this, different PLSR models were evaluated for estimating real activity duration based on synthetic variables. A case study including eight ADLs was considered to validate the proposed approach. The results revealed that simulated and real observations are significantly different in some ADLs (p-value < 0.05), nevertheless synthetic variables can be further modified to predict the real activity duration with high accuracy (R2(pred)>90%).

People Living with a Dementia Diagnosis with No Eldercare at all: Who Are They?

Dementia is a non-curable disease that progressively affects people's ability to handle their everyday life. Still, previous Swedish research found that many people living with dementia (PlwD) do not use any eldercare. In this study, we investigated the association between not using eldercare services and key social background factors: years with dementia, hospital care, and country of birth for PlwD. We identified all people aged 65+ diagnosed with dementia between January 2006 and March 2015 (n = 43,372) using secondary data analysis of information taken from multiple Swedish nationwide registers. Results showed that not using eldercare was more common among younger age groups and men. The likelihood of having no eldercare was three times higher for those cohabiting; notably, almost a fifth of the PlwD who had the diagnosis for four years or more did not have eldercare at all. Finally, people born outside Europe used eldercare less than persons born in Sweden. Since the public dementia policy in Sweden is basically geared toward PlwD in a later stage and primarily in residential care, there has been almost no policy development around the needs and rights of PlwD in their homes. This study provides a ground for reconsidering dementia policy regardless of the ethnic and cultural backgrounds of PlwD.

Estimating the minimum important difference in the DEMQOL instrument in people with dementia.

PURPOSE: The Dementia-Related Quality of Life (DEMQOL) measure and the DEMQOL-Utility Score (DEMQOL-U) are validated tools for measuring quality of life (QOL) in people with dementia. What score changes translate to a clinically significant impact on patients' lives was unknown. This study establishes the minimal important differences (MID) for these two instruments. METHODS: Anchor-based and distribution-based methods were used to estimate the MID scores from patients enrolled in a randomised controlled trial. For the anchor-based method, the global QOL (Q29) item from the DEMQOL was chosen as the anchor for DEMQOL and both Q29 and EQ-5D for DEMQOL-U. A one category difference in Q29, and a 0.07 point difference in EQ-5D score, were used to classify improvement and deterioration, and the MID scores were calculated for each category. These results were compared with scores obtained by the distribution-based methods. RESULTS: A total of 490 people with dementia had baseline DEMQOL data, of these 386 had 8-month data, and 344 had 12-month DEMQOL data. The absolute change in DEMQOL for a combined 1-point increase or decrease in the Q29 anchor was 5.2 at 8 months and 6.0 at 12 months. For the DEMQOL-U, the average absolute change at 8 and 12 months was 0.032 and 0.046 for the Q29 anchor and 0.020 and 0.024 for EQ-5D anchor. CONCLUSION: We present MID scores for the DEMQOL and DEMQOL-U instruments obtained from a large cohort of patients with dementia. An anchored-based estimate of the MID for the DEMQOL is around 5 to 6 points; and 0.02 to 0.05 points for the DEMQOL-U. The results of this study can guide clinicians and researchers in the interpretation of these instruments comparisons between groups or within groups of people with dementia. TRIAL REGISTRATION NUMBER AND DATE OF REGISTRATION: ISRCTN17993825 on 11th October 2016.

An individualized telephone-based care support program for rural family caregivers of people with dementia: study protocol for a cluster randomized controlled trial.

BACKGROUND: There are about 9.5 million people with dementia in China. Up to 99% of them are cared for by their family caregivers. Family caregivers are confronted with considerable difficulties and challenges while providing care. They often experience high levels of emotional, physical, financial, and social burdens. Caregivers in rural areas experience an even higher level of burden compared to their counterparts in urban areas due to fewer health resources for dementia care. However, so far, no intervention study has been conducted to support family caregivers in rural areas of China. The aim of this proposed study is to adapt and evaluate an evidence-based and culturally-tailored individualized telephone-based care support (ITBCS) program for family caregivers of people with dementia in rural China. METHODS: A cluster randomized controlled trial (RCT) will be conducted to evaluate the effectiveness of the ITBCS compared with usual care for Chinese rural family caregivers of people with dementia. A total sample of 168 rural family caregivers will be recruited. The intervention components consist of a 3-month intensive telephone-based care support intervention followed by telephone-based follow-up consultations for 6 months. The control group will receive usual care services available for them. Outcome measures include carers' subjective burden, depressive symptoms, health-related quality of life, social support, caregiving self-efficacy, and care recipients' difficult behaviours and competence in activities of daily living at 3, 9 and 15 months after baseline. The potential cost-effectiveness of the ITBCS compared with usual care will be assessed as well. DISCUSSION: If effective, the ITBCS program can be adapted and used in rural areas of China as a blueprint to improve the quality of home-based care for people with dementia. Findings from the present study are significant for developing evidence-based dementia care policy in rural China. TRIAL REGISTRATION: Chinese Clinical Trial Registry, ChiCTR2000038821 , Registered 4 April 2020, http://www.chictr.org.cn/showprojen.aspx?proj=62268 .