Dementia, comorbidity and multimorbidity.

Many people living with dementia will also have multimorbidity comprising several other intercurrent, long-term and comorbid conditions. This article examines the relationship between such conditions in the context of dementia, giving an overview of the literature, including prevalence and some of the common conditions that can coexist with dementia. The theory and evidence-base will be tied together using a case study approach, to illustrate the complexity of managing comorbid conditions and multimorbidity alongside dementia, and explore some of the approaches that can be used by community nurses to support the overall health of people living with dementia that they work with.

Efficacy of COMPAs, an App Designed to Support Communication Between Persons Living With Dementia in Long-Term Care Settings and Their Caregivers: Mixed Methods Implementation Study.

BACKGROUND: Persons living with dementia experience autonomy loss and require caregiver support on a daily basis. Dementia involves a gradual decline in communication skills, leading to fewer interactions and isolation for both people living with dementia and their caregivers, negatively impacting the quality of life for both members of the dyad. The resulting stress and burden on caregivers make them particularly susceptible to burnout. OBJECTIVE: This study aims to examine the efficacy of Communication Proches Aidants (COMPAs), an app designed following the principles of person-centered and emotional communication, which is intended to improve well-being in persons living with dementia and caregivers and reduce caregiver burden. METHODS: In this implementation study, volunteer caregivers in 2 long-term care facilities (n=17) were trained in using COMPAs and strategies to improve communication with persons living with dementia. Qualitative and quantitative analyses, semistructured interviews, and questionnaires were completed before and after 8 weeks of intervention with COMPAs. RESULTS: Semistructured interviews revealed that all caregivers perceived a positive impact following COMPAs interventions, namely, improved quality of communication and quality of life among persons living with dementia and caregivers. Improved quality of life was also supported by a statistically significant reduction in the General Health Questionnaire-12 scores (caregivers who improved: 9/17, 53%; z=2.537; P=.01). COMPAs interventions were also associated with a statistically significant increased feeling of personal accomplishment (caregivers improved: 11/17, 65%; t15=2.430; P=.03; d=0.61 [medium effect size]). CONCLUSIONS: COMPAs intervention improved well-being in persons living with dementia and their caregivers by developing person-centered communication within the dyad, increasing empathy, and reducing burden in caregivers although most caregivers were unfamiliar with technology. The results hold promise for COMPAs interventions in long-term care settings. Larger group-controlled studies with different populations, in different contexts, and at different stages of dementia will provide a clearer picture of the benefits of COMPAs interventions.

The Experiences of Hospital Admission in a Single Room for Older Persons With Dementia and Their Families: A Scoping Review.

INTRODUCTION: When older persons with dementia are admitted to hospital, they often feel disoriented and confused and their cognitive impairment may worsen, purely due to the sudden change in their environment. As such hospital design is recognised as an important aspect in the care and well-being of older persons with dementia. As the number of persons with dementia is increasing, the experience of admission to a hospital with, for example, single rooms is more relevant than ever. AIM AND METHODS: This scoping review aimed to identify, explore and conceptually map the literature reporting on what older people with dementia and their families experienced during admission to a hospital with single room accommodation. We followed the Joanna Briggs Institute recommendations for undertaking a scoping review. In addition, we used the Preferred Reporting Items for Systematic reviews (PRISMA-ScR) Checklist, which assisted the development and reporting of this scoping review. RESULTS: We included 10 sources within a time frame of 23 years (1998-2021). The sources originate from Europe, Australia and Canada. We identified three conceptual maps: Safety and security, Privacy and dignity and Sensorial stimulation. Our review demonstrates that the themes of the three conceptual maps are experienced as mutually interdependent for the older persons with dementia and their families. CONCLUSION: We conclude that it is not merely the single room design that determines what the older persons with dementia and their families experience as important; the exposure to sensorial stimulation and the presence of well-trained staff taking a dignified patient-centred approach are also crucial for their experience of high-quality nursing care.

Motivators for family carers of persons with dementia in Kenya.

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

Needs analysis of family caregivers of people living with dementia in Sleman Regency, Yogyakarta.

BACKGROUND: Without appropriate support, taking care of people living with dementia may become a burden for family caregivers. Identifying the needs for caregivers can help them minimise the burden of caring and meet quality care for people living with dementia. METHODS: In the first phase, a content validity test was conducted on the Carers' Needs Assessment of Dementia (CNA-D) in the Indonesian version. The second phase, a sequential explanatory mixed-methods design, was conducted on 65 family caregivers in two stages. The first stage was a cross-sectional study. A correlation test between caregiver problems and caregiver burden was conducted. The caregiver problems that were statistically significant were analyzed to reveal the unmet needs. A needs analysis was also conducted on problems experienced by more than half of the caregivers. In the second stage, we conducted a semi-structured individual interview, and thematic analysis was used to analyze the data. RESULTS: The result of the validity test of the CNA-D instrument, Indonesian version, obtained a high value for content validity. The main problem of caregivers is a lack of information about dementia; however, it does not have a significant correlation with caregiver burden. The caregiver problem with the highest correlation to caregiver burden is burnout due to caring. More than 50% of caregivers' needs in Sleman Regency were not met in this research. The most essential needs that were not met were counselling and psychotherapy (83.3%-92%). The personal understanding of dementia, spiritual values in caring, cultural values in caring, barriers to accessing healthcare services, and self-care strategies should be considered in fulfilling family caregiver needs. CONCLUSION: Most of the needs of family caregivers of people living with dementia in Sleman Regency, Yogyakarta, have not been met. Therefore, it requires collaboration with multi-professionals and all stakeholders to fulfil these needs.

Social Media Discourse Related to Caregiving for Older Adults Living With Alzheimer Disease and Related Dementias: Computational and Qualitative Study.

BACKGROUND: In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease-related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support. OBJECTIVE: We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users. METHODS: We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus. RESULTS: The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person. CONCLUSIONS: Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD.

Affiliate Stigma among family caregivers of individuals with dementia in China: a cross-sectional study.

Background: Affiliate stigma experienced by family caregivers of individuals with dementia may seriously affect home care and prognosis of these patients. This study aimed to explore the levels of perceived affiliate stigma and its influencing factors among family caregivers of patients with dementia in mainland China, which remains a relatively unexplored topic. Methods: In this cross-sectional study, purposive sampling was used to recruit dementia family caregivers from an online communication group between April and May 2022. A total of 727 eligible caregivers were included and asked to complete the demographic questionnaire, the affiliate stigma scale, and the caregiver burden inventory. Descriptive statistics, independent sample t-test, one-way analysis of variance, Pearson correlation analysis, and multiple linear regression were used to explore the factors that influence perceived affiliate stigma among dementia family caregivers. Results: The mean score for affiliate stigma of dementia family caregivers was 48.09 ± 16.38 (range: 22-86). Whether there were regular breaks during patient care, time-dependent burden, developmental burden, physical burden, and social burden were significant factors influencing the affiliate stigma of dementia family caregivers. Conclusion: Dementia family caregivers showed a moderate to high level of affiliate stigma. Those who had regular breaks during patient care, higher time-dependent burden, developmental burden, and physical burden and lower social burden exhibited higher levels of affiliate stigma.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

BACKGROUND: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. METHODS: To test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. DISCUSSION: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care. TRIAL REGISTRATION: Clinical Trials.gov NCT05846984 . This study was registered on May 6, 2023.

Experiences of family caregivers taking care getting lost of persons with dementia: a qualitative study.

BACKGROUND: Getting lost with family members who have dementia is a significant source of stress for family caregivers. In Taiwan, family caregivers develop strategies to deal with dementia persons who may get lost. This study aimed to explore the experiences of family caregivers caring for persons with dementia who have been lost outside the home. METHODS: A descriptive phenomenological method was used. The COREQ checklist was used to ensure the explicit reporting of data. A total of 20 family caregivers caring for persons with dementia who were lost outside their homes were selected from hospital outpatient clinics and a day care center in northern Taiwan using purposive sampling. Data were analyzed using the Giorgi analysis method. RESULTS: Five main themes emerged: (i) surprised persons with dementia lost outside, (ii) using strategies to prevent persons with dementia from getting lost, (iii) using strategies to find lost persons with dementia, (iv) exhaustion in long-term care persons with dementia, and (v) coping with the care load. It was found that family caregivers were surprised, nervous, and worried about persons with dementia being lost outside. They used the first strategy to supervise persons with dementia to prevent external losses. In addition, long-term supervision of persons with dementia led to mental exhaustion in the family caregivers. Finally, the family caregivers learned about loss prevention strategies and obtained family support and care replacement workers to reduce the care burden. CONCLUSIONS: It is essential to teach family caregivers early to prevent persons with dementia from losing external strategies. Nurses also provide long-term care services to reduce the care burden on family caregivers.

Evaluation of a dementia awareness game for health professions students in Northern Ireland: a pre-/post-test study.

BACKGROUND: Dementia is a prevalent global health issue, necessitating comprehensive education for healthcare practitioners and students. Nursing and pharmacy students, provide support across healthcare settings often working as frontline caregivers. Therefore, it is imperative to equip these students with a profound understanding of dementia. The aim of this study was to evaluate whether a serious dementia game co-designed with stakeholders, students, and people living with dementia improved the attitudes of nursing and pharmacy students. METHODS: A pretest-posttest design was used to assess the attitudes of health professions students (nursing and pharmacy) towards dementia. The Approaches to Dementia Questionnaire (ADQ) was administered before and after playing a serious Dementia Game. The ADQ measured the total score, Hope subscale, and Recognition of Personhood subscale. Matched pairs t-test was used for analysis conducted with IBM SPSS statistics 27. RESULTS: A diverse cohort of 505 participants from one university in Northern Ireland participated, with 461 matched pairs used for analysis. Both nursing and pharmacy students demonstrated a significant increase in overall dementia attitudes post-gameplay, with nursing students showing an increase from 79.69 to 83.59 and pharmacy students from 75.55 to 79.86. Subscales for Hope (Nursing = 28.77 to 31.22, Pharmacy = 26.65 to 29.20). and Recognition of Personhood also exhibited significant improvement (Nursing = 50.93 to 52.38, Pharmacy = 48.89 to 50.67). Demographic data revealed predominantly female participants, a lack of personal connections to dementia, and varied training experiences. DISCUSSION: The study highlights the efficacy of the serious Dementia Game in enhancing attitudes to dementia amongst health professions students, indicating its potential as an educational tool. The study contributes to the growing body of evidence supporting serious games and gamification in healthcare education.

Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study.

Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information-searching skills.

[A Multicenter randomized comparative study of dementia nursing practice skills development programs for nurses in acute care hospitals: A Comparison of person-centered care and dementia-type-specific programs].

PURPOSE: The present multicenter randomized controlled trial explored the effectiveness of a person-centered care program (intervention group) and a dementia-type-specific program (control group) for nurses in acute-care hospitals. METHODS: Seven hospitals in Prefecture A were randomly allocated to two groups (an intervention group and a control group), and a study of these groups was conducted from July 2021 to January 2022. RESULTS: A total of 158 participants were included in the study: 58 in the control group and 100 in the intervention group. In a comparison of assessment values immediately after the course, three months later, and six months later for both the intervention and control groups, "expertise in dementia nursing," "medical expertise in dementia, " and "confidence in nursing older people with dementia" were all significantly higher than before the course. Significant improvements in the intervention group's "knowledge of dementia" and "sense of dignity" on the ethical sensitivity scale were found immediately after the course compared to baseline, three months later, and six months later and were also significantly greater than the control group in terms of the amount of change. In the control group's "unique care tailored to cognitive function and the person," there were significant improvements in the ratings immediately after the course and three and six months after the course compared to baseline, with significantly greater amounts of change than in the intervention group. CONCLUSION: The person-centered care program for nurses led to improvements in the knowledge about dementia and awareness of the dignity of ethical sensitivity. In addition, the type of dementia program had a significant influence on medical knowledge and unique care tailored to the cognitive function and the individual patient. Further outcome evaluations of physical restraint rates as a quality of care in nursing practice are needed.

Factors Affecting Research Participation Among Specialist Dementia Nurses.

BACKGROUND: Research involvement and engagement is a vital aspect of nursing practice. However, research in dementia care remains limited compared to research focused on finding a cure, presenting a significant gap that specialist dementia nurses (Admiral Nurses) can help bridge by participating in research themselves and facilitating recruitment to research. OBJECTIVES: This study aimed to assess the research involvement and support needs of Admiral Nurses and identify factors affecting their participation in research. This research is particularly timely as Dementia UK has launched its first research strategy, which necessitates strengthening research capacity within Admiral Nursing. METHODS: We used a mixed methods convergent parallel synthesis design, simultaneously collecting quantitative and qualitative data. An online survey was conducted in January 2023, targeting current Admiral Nurses across the United Kingdom. The survey included questions addressing demographics, research experience, goals, barriers, facilitators, and support needs. Data analysis involved descriptive statistics, frequencies, univariate analyses, and thematic analysis. RESULTS: A positive relationship was found between the highest level of academic achievement and current or previous research involvement, as well as interest in becoming involved in research in the future. Although most nurses recognized the importance of research, only half reported current or past research involvement, indicating a need for increased support. A lack of access and opportunities for peer discussion hindered engagement with research findings. Time constraints, lack of support, and low confidence were major barriers to research involvement. Support needs varied but included mentorship, coaching, and the potential for a community of practice for research. DISCUSSION: This survey of Admiral Nurses sheds light on their research involvement, support needs, and barriers to participation. Recognizing the significance of research while identifying challenges and support requirements is crucial for enhancing research capacity among these specialized nurses. This study contributes valuable insights into the world of specialist dementia nursing and lays the foundation for future strategies to increase research engagement in this field.

Exploration of family caregivers' experiences on coping in dementia care in Ghana: a phenomenological study.

BACKGROUND: Dementia is an important public health and geriatric concern for sub-Saharan African countries, including Ghana. Evidence shows that persons living with dementia are often supported and cared for by family caregivers in the community. In the execution of these services to the persons living with dementia, family caregivers are overwhelmed and experience heightened stress that results in serious repercussions. Therefore, the aim of this study was to explore family caregivers' experiences on coping in dementia care in Ghana. METHODS: Adopting a descriptive phenomenological design, individual face-to-face interviews were conducted among thirty unpaid family caregivers of persons living with dementia in Ghana. Semi-structured interview guides were used. The data analysis process followed Clarke and Braun's framework analysis. RESULTS: Six themes were generated from the textual data. These themes were captioned as: (1) empathy and perspective-taking; (2) family support and cohesion; (3) coaxing and pampering of persons living with dementia; (4) humour and positive communication; (5) spiritual support; and (6) ethical/moral consideration in dementia caregiving. CONCLUSION: We conclude that unpaid family caregivers of persons living with dementia in Ghana adopt varied strategies to cope with the strains of caregiving. Healthcare facilities that provide services to persons living with dementia could incorporate caregiver preparatory training or education for family caregivers. This training should focus on briefing family caregivers about the potential strains that they are likely to encounter. Also, the training could focus on equipping family caregivers with the knowledge and skills to effectively communicate and care for the persons living with dementia using person-centered approaches. Key stakeholders such as the Ghana Health Service and Alzheimer's Ghana must raise awareness about the dangers of caregivers' violation of the autonomy and freedom of persons living with dementia as they navigate through the challenges of caregiving. Lastly, faith-based institutions need to be considered as key stakeholders in dementia interventions since they could play a critical role.

Psychological Distress, Multicare Needs and Social Resource Utilisation of Family Caregivers of People With Dementia: A Descriptive-Correlational Study.

BACKGROUND: The population of people with dementia increases yearly, imposing a growing burden on family caregivers. Psychological distress impacts the mental health of family caregivers of people with dementia. Caregiver psychological distress can result in increased social resource utilisation and unmet multicare needs. PURPOSE: The study explored the psychological distress of family caregivers of people with dementia and examined the impact on social resource utilisation and multicare needs. METHODS: A descriptive-correlational study collected data in Taiwan from a cross-sectional sample of family caregivers of people with dementia using a self-report questionnaire. Data were analysed using linear and logistic regression. RESULTS: A total of 301 caregivers provided data for analysis. Nearly two-thirds of caregivers were female with a mean age of 57 years old (SD = 12). Over half of the family caregivers of people with dementia experienced mild-to-moderate psychological distress. The greater the psychological distress, the greater the probability of using social resources (1.09 times per 1-point increase, p = 0.002). Psychological distress was positively associated with the number of caregivers' care needs (ß = 0.371, p < 0.001). CONCLUSIONS: Findings of this study can assist healthcare professionals in better understanding the psychological distress and care needs of caregivers. Services designed to meet the needs of family caregivers will improve psychological distress.

Evaluating a mobile-based intervention to promote the mental health of informal dementia caregivers in Singapore: Study protocol for a pilot two-armed randomised controlled trial.

BACKGROUND: Informal caregivers of persons with dementia (PWD) often suffer adverse impacts on their mental health and require interventions for effective support. As they are often occupied with providing care, web-based interventions could be more convenient and efficient for them. However, there is currently a dearth of evidence-based mobile interventions to enhance the mental well-being of dementia caregivers locally, especially ones that are user-centered and culturally relevant. Hence, having designed an app based on feedback from local dementia caregivers, this study will evaluate the effectiveness of this mobile app in promoting the mental health of informal caregivers of PWD in Singapore. METHODS: A pilot two-armed randomised controlled trial will be conducted on 60 informal caregivers of PWD recruited via convenience and snowball sampling. Thirty participants will be assigned to the intervention group, while another 30 will be in a waiting-list control group. Questionnaires will be administered at baseline and one month after, with the primary outcome being the difference in the change of depressive symptoms among the two groups. STATISTICAL ANALYSIS: Primary analyses will follow the intention-to-treat principle and compare changes from baseline to the one-month follow-up time point relative to the control group. A repeated measures ANOVA will be conducted to examine differences between the groups over time. SIGNIFICANCE: To our knowledge, this is the first study in Singapore that seeks to promote the mental health of informal dementia caregivers through a mobile-based intervention. The findings can inform the development and evaluation of future evidence-based digital interventions for local informal caregivers of PWD to address the gap in availability of such resources for them. TRIAL REGISTRATION: ClinicalTrials.gov (NCT05551533). Registration date: September 22, 2022.

Paid Caregiving in Dementia Care Over Time: Paid Caregiver, Family Caregiver, and Geriatrician Perspectives.

BACKGROUND AND OBJECTIVES: As long-term care increasingly moves from facilities to the community, paid caregivers (e.g., home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time. RESEARCH DESIGN AND METHODS: We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate-to-severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis. RESULTS: Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for. DISCUSSION AND IMPLICATIONS: Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e., person-centered care), but also their family caregivers (i.e., family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families.

Is elderspeak communication in simulated hospital dementia care congruent to communication in actual patient care? A mixed-methods pilot study.

AIMS: Simulation offers a feasible modality to prepare nurses for challenges communicating with patients with dementia. Elderspeak communication is speech that sounds like baby talk and can lead to rejection of care by patients with dementia. However, it is unknown if simulation can be used to capture elderspeak communication in dementia care. The purpose of this mixed-methods study was to determine if simulation accurately captures elderspeak communication by nursing staff in hospital dementia care. DESIGN: A 3-part mixed-methods design in which (1) three dementia care simulations were designed and validated by a panel of experts, (2) communication by nursing staff completing each simulation was quantitatively compared to communication during actual patient care, and (3) views on the realism were explored using within- and across-case coding. METHODS: Three simulations using different modalities (manikin, role-play, and standardised patient) were designed and validated with eight experts using the Lynn Method. Ten nursing staff were audio-recorded and their communication was coded for elderspeak communication. Results for each simulation were compared using Wilcoxon signed-rank test to recordings taken during actual dementia care encounters. Debriefings were coded for realism and results were converged. RESULTS: The average time using elderspeak during naturalistic care was 29.9% (SD = 20.9%) which did not differ from the average amount of elderspeak used across the three simulations modalities which ranged from 29.1% to 30.4%. Qualitative results suggested a lack of realism with the manikin condition and the nursing staff indicated preference for the simulation with the standardised patient. CONCLUSIONS: Communication elicited in the dementia care simulations was congruent to communication produced in actual dementia care but preference was for the standardised patient. IMPLICATIONS FOR PATIENT CARE: Elderspeak communication can be accurately produced in the simulated environment which indicates that simulation is a valid method for person-centred communication training in nursing staff. IMPACT: Simulation offers a feasible modality to prepare nurses for challenges communicating with patients with dementia. Elderspeak communication is speech that sounds like baby talk and can lead to rejection of care by patients with dementia. However, it is unknown if simulation can be used to capture elderspeak communication in dementia care. Elderspeak communication captured in the simulated environment was congruent to communication nursing staff use during actual patient care to hospitalised persons living with dementia. This study empirically identifies that communication is elicited in similar patterns by nursing staff in the simulated environment compared to the naturalistic care environment which demonstrates that simulation can be used as a valid tool for education and research on person-centred communication. REPORTING METHODS: STROBE. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.

Longitudinal Trajectories of Stress and Positive Aspects of Dementia Caregiving: Findings From the IDEAL Programme.

OBJECTIVES: Understanding what influences changes over time in caregiver well-being is important for the development of effective support. This study explores differences in trajectories of caregiver stress and positive aspects of caregiving (PAC). METHODS: Caregivers of community-dwelling individuals with mild-to-moderate dementia at baseline from the IDEAL cohort were interviewed at baseline (n = 1,203), 12 months (n = 917), and 24 months (n = 699). Growth mixture models identified multiple growth trajectories of caregiver stress and PAC in the caregiver population. Associations between study measures and trajectory classes were examined using multinomial logistic regression and mixed-effects models. RESULTS: Mean stress scores increased over time. A 4-class solution was identified: a "high" stable class (8.3%) with high levels of stress, a "middle" class (46.1%) with slightly increasing levels of stress, a "low" class (39.5%) with initial low levels of stress which slightly increased over time, and a small "increasing" class (6.1%) where stress level started low but increased at a steeper rate. Mean PAC scores remained stable over time. A 5-class solution was identified: 3 stable classes ("high," 15.2%; "middle," 67.6%; "low" 9.3%), a small "increasing" (3.4%) class, and 1 "decreasing" class (4.5%). For stable classes, positive ratings on study measures tended to be associated with lower stress or higher PAC trajectories and vice versa. Those with "increasing" stress also had worsening trajectories of several study measures including depression, relationship quality, competence, and ability to cope. DISCUSSION: The findings highlight the importance of identifying caregivers at risk of increased stress and declining PAC and offering them targeted support.

Risk and dementia.

People with dementia and their family carers may be subject to a number of different risks; these risks may overlap with, and impact on one another. Due to changes in capacity that come with dementia, people with the diagnosis may be overly cautious about decisions made relating to risk made on their behalf, and this may have a negative impact on their wellbeing and quality of life. This article aims to educate community nurses on the risks they need to be aware of when working with families affected by dementia, and presents a risk enablement framework as a way of assessing and managing risk in a person-centred way.