Dementia Care Research Articles

Akrivia Health Database—deep patient characterisation using a secondary mental healthcare dataset in England and Wales: cohort profile

PurposeThe Akrivia Health cohort was created to extract data from electronic health records in secondary mental health and dementia care services in England and Wales. The data are anonymised, structured...

Comparing the effectiveness of individual occupation-based reminiscence therapy at home and in a dementia care centre on cognitive function in older adults with mild dementia: a pilot randomised controlled trial.

The need for research on individual home therapies to promote continued community-dwelling among older adults with mild dementia is growing. This study aimed to compare the effects of individual occupation-based reminiscence therapy at home (IOBRT-H) and individual occupation-based reminiscence therapy in a dementia care centre (IOBRT-DCC) on cognitive function, depression, and instrumental activities of daily living (IADL) among community-dwelling older adults with mild dementia. This study was a randomised controlled trial. Twenty-six community-dwelling older adults with mild dementia were randomised to the IOBRT-H (n = 13) and IOBRT-DCC (n = 13) groups. The intervention was conducted for 10 weeks, with one session a week and each session lasting 60 min for both groups. Cognitive function was assessed using the Allen Cognitive Level Screen (ACLS), depression with the short form of the Geriatric Depression Scale Korean version (SGDS-K), and IADL using the Seoul-Instrumental Activities of Daily Living (S-IADL). Both the IOBRT-H and IOBRT-DCC groups showed significant improvements in ACLS scores (P < 0.01 and P < 0.01, respectively). The SGDS-K score decreased only in the IOBRT-H group (P < 0.01). Between the groups, the IOBRT-H group had significantly greater improvements in both ACLS and SGDS-K scores than the IOBRT-DCC group (P < 0.05 and P < 0.05, respectively). This study's results indicated the potential for applying IBORT-H as an intervention to improve cognitive function and reduce depression in community-dwelling older adults with mild dementia. We expect the findings of this study to serve as useful foundational data for developing home-visiting cognitive programs.

The impact of cultural practice and policy on dementia care in Nepal

BackgroundPeople’s wider culture plays a vital role in both dementia care and policy. This study aims to explore the cultural practice and policy influence around caring for People Living with Dementia (PLWD) in Nepal.MethodsAn exploratory qualitative study was designed to investigate dementia care in Nepal. The study comprised four in-depth interviews and four focus group discussions with 29 participants, including family members, health care professionals, and other stakeholders. Data were analysed using thematic analysis.ResultFour major themes (each with several sub-themes) were identified: (1) Cultural practice in dementia care; (2) Impact of policy on the dementia care; (3) Service provision; and (4) Education and training.ConclusionThere is a need for community-based awareness raising on dementia and its care, to sensitise all relevant stakeholders to meet the needs of PLWD. In addition, capacity building of health workforce is needed to enhance their knowledge of and skills in providing culturally appropriate dementia care.

U.S. corrections officers’ discourse about dementia

The United States has more prisoners than any other country in the world: more than 1.5 million persons were housed in state and federal prisons in 2020. A sizeable percentage are ageing; Physician’s Weekly estimates that by 2030, people aged over 50, the age at which the incarcerated are considered to be ‘old’, will make up one-third of the U.S. prison population. That group will include a great many persons who have or are developing dementia and who are guarded by correctional officers. We can, then, consider that correctional staff as well as prisoners form an overlooked dementia care minority. Using conversation and discourse analysis, we focus on epistemic modal adverbs as discourse markers in spoken commentary by current correctional officers about prisoners with dementia, as some markers can signal an uneasiness with which they position themselves as knowledgeable about rights and duties in ageing and dementia. Officers frame their discourse to identify concerns about a prison system that deals poorly with inmate losses of cognitive ability and memory and suggest a need for additional training and support in communicating with incarcerated older prisoners who may have dementia.

The Impact of Physical Environment on Residents’ Well-Being and Staff Care Practice in Dementia Care Homes in Canada and the Netherlands

This qualitative study examines how the physical environment affects residents’ well-being and staff’s practice in dementia care homes. Staff members in four care homes participated in focus groups in Canada and the Netherlands. Thematic analysis generated five themes: (i) promoting autonomy and social engagement, (ii) creating a home-like atmosphere, (iii) managing sensory stimulation, (iv) fostering a sense of connectedness, and (v) facilitating a stress-free work environment The study highlights the physical environment’s profound impact on residents’ well-being and staff care practice.

Preventing risk of placement breakdown and hospital admission in the management of distressed behaviour in dementia care: A qualitative case study with family and care-home staff.

Objectives: Behaviours such as hitting-out and declining personal care are commonly exhibited by people living with dementia and are associated with care-giver stress and anxiety and care home placement breakdowns. Traditionally, pharmacological approaches have been used to manage behaviour; however, research indicates limited effectiveness. National guidelines recommend use of non-pharmacological interventions as first line treatment for distress, but further research is required to elucidate the components that lead to improved care for people living with dementia. This study aims to explore what works, examining case studies in which a non-pharmacological clinical intervention, the Newcastle Model, was used to understand and manage distressed behaviour in dementia care within care home settings. Method: A qualitative case study design was used. Three cases were selected from the Edinburgh Behaviour Support Service for their success in preventing care home placement breakdown during a distressed behaviour intervention in NHS Scotland. Family members and staff involved in the interventions within these cases were interviewed (N = 6). Thematic analysis was used to analyse data. Findings: All participants reported positive outcomes from the intervention. Three key themes were identified, each with subthemes. Participants described a supportive, non-judgmental environment which allowed them to integrate knowledge about dementia and tailor interventions to the specific needs of the individual living with dementia. There was also a sense of family and staff coming together to unite with shared goals. A preliminary model of all of themes and their interactions is presented. Conclusion: The study supports use of biopsychosocial, formulation-led approaches in the understanding and treatment of complex behavioural presentations in community care settings. It suggests that clinicians should endeavour to facilitate safe and open environments for care home staff and family members, in order to promote attribution change and person-centered care, and to help mediate differences and conflict between staff and family members.

Dementia knowledge of family caregivers in Indonesia: A cross-sectional survey study.

As the population ages, the prevalence of dementia in Indonesia is rapidly increasing. In Indonesia, dementia care is primarily provided by informal or family caregivers. However, there is limited information about these caregivers' understanding of dementia and the factors that may influence their knowledge. Given that family members are the primary source of dementia care in Indonesia, it is essential to understand their knowledge and identify any gaps to inform future educational interventions. To explore the knowledge of dementia among Indonesian family caregivers and identify the sociodemographic factors associated with dementia knowledge. A cross-sectional survey was conducted in 2022 with 200 family caregivers who were members of Alzheimer's Indonesia (ALZI) support groups. These caregivers received invitations via ALZI to complete a translated version of the Dementia Knowledge Assessment Scale (DKAS-I). Independent t-tests and ANOVAs were used to examine differences in dementia knowledge across various subgroups, such as gender, education, and age. Seventy-six family caregivers completed the DKAS-I (38% response rate). Respondents had an average age of 49 years, were mostly female, and the majority were children of people with dementia. Over two-thirds of the DKAS-I items were answered correctly by family caregivers, with the 'care considerations' domain scoring the highest. Age, relationship to the person with dementia (being a child), and prior dementia education were significantly correlated with higher dementia knowledge in our sample. Family caregivers of people living with dementia across 10 Indonesian provinces who were members of dementia support groups demonstrated moderate dementia knowledge. Targeted education is needed to address gaps in knowledge about communication and behavioural changes in people with dementia and other areas related to quality of care. There is an opportunity for gerontological nurses with specialised dementia knowledge to lead educational initiatives for family caregivers to enhance their capacity. Future research should also investigate the dementia knowledge of caregivers in the general population, who may be older and less educated compared to the participants in this study.

Barriers and facilitators to providing rehabilitation for long-term care residents with dementia: a qualitative study

BackgroundRehabilitation can help long-term care (LTC) residents with dementia maintain their independence. However, many residents do not receive rehabilitation. This study aimed to identify the barriers and facilitators to providing rehabilitation for LTC residents with dementia and propose practical interventions for overcoming them.MethodsUsing a phenomenological research design, we conducted a qualitative study involving 17 privately owned LTC homes in Nova Scotia, Canada. Data were collected through individual interviews and a focus group with residents with dementia (n = 3), family members (n = 4), rehabilitation providers (n = 6), and other staff (n = 3). We analyzed the data using inductive thematic content analysis and mapped the results onto the socioecological framework and the Behaviour Change Wheel (BCW) to classify and analyze barriers and facilitators to rehabilitation. The APEASE criteria (Acceptability, Practicability, Effectiveness, Affordability, Side-effects, and Equity) in the BCW were used to identify feasible interventions and policies linked to the identified barriers and facilitators.ResultsBarriers at the intrapersonal level included communication difficulties, comorbidities, and lack of motivation among residents. Interpersonal factors encompassed the availability of family support and lack of interdisciplinary practice. Policy/environmental factors involved limited resources, complex admission processes, low staff ratios, and restrictive restraint policies. Enhancing communication, reducing the use of restraints, promoting interdisciplinary practice, and increasing accessibility to activity spaces and equipment will improve the provision of rehabilitation for the residents.ConclusionEnhancing the capabilities, opportunities, and motivations of all actors in LTC homes can potentially minimize these barriers. Interventions such as staff training on effective communication and dementia care, promoting person-centred and meaningful activities, and improving interdisciplinary collaboration are crucial. Policy measures to improve hospital-to-LTC transitions, increase volunteer involvement, educate families and communities, and recruit more staff are recommended. Addressing these barriers through targeted interventions and policy changes can significantly improve rehabilitation provision for residents with dementia in LTC settings.

Perceptions about dementia clinical trials among underrepresented populations: a nationally representative survey of U.S. dementia caregivers

BackgroundThe research community has historically failed to enroll diverse groups of participants in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient’s clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations among dementia caregivers, in their decision to participate in clinical research as study partners.MethodWe embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of U.S. dementia caregivers, oversampling non-Hispanic Black and Hispanic caregivers. Dementia caregivers were asked about their willingness to participate in the trial with their care recipient and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics were analyzed as predictors of trial participation in a base demographic model. In a second reasons model caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey-weighted logistic regression.ResultThe sample consisted of 610 dementia caregivers, including 156 non-Hispanic Black and 122 Hispanic caregiver participants. In the base demographic model, hypothetical trial participation was negatively associated with older caregiver age (OR (odds ratio) = 0.72, p = < 0.001). In the reasons model, the rated importance of a social responsibility to help others by participating in research was significantly associated with participation (OR = 1.56, p = 0.049), while the importance of the possibility of the care recipient experiencing serious side effects was negatively associated with participation (OR = 0.51, p = 0.003). In both models there was no significant difference in hypothetical participation between non-Hispanic Black and non-Hispanic White caregivers, or between Hispanic and non-Hispanic White caregivers.ConclusionHispanic and non-Hispanic Black dementia caregivers were not less likely than non-Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups but may instead reflect structural barriers and historic exclusion from trial participation.

Exploring the perceptions of New Zealand Chinese dementia carers on the adapted world health organization iSupport manual: A qualitative study.

Across countries, most dementia carers report a lack of adequate information about dementia and local services. To address this issue, the World Health Organization developed the iSupport programme to provide information and support to dementia carers. The iSupport online programme was found to be feasible and acceptable by dementia carers. However, the potential of using the iSupport manual (iSupport) specifically for Chinese dementia carers in New Zealand remains unknown. This study aimed to (1) identify refinements to adapt iSupport by eliciting the perspectives of Chinese dementia carers; and (2) explore the educational needs of Chinese dementia carers, which can inform the development of support programmes tailored to their specific requirements. This was a qualitative descriptive study using semistructured interviews. The data were analysed using thematic analysis. Twelve Chinese dementia carers were interviewed (mean age 58.0years, 100% female, and mean caring experience of 2.2years). Emerging themes were identified within three domains: (1) usefulness, (2) complexities of using iSupport, and (3) suggestions for improvement. The findings suggest that Chinese dementia carers generally found iSupport to be valuable, providing valuable insights into how to tailor and enhance support for this population. However, further research is required to empirically validate the effectiveness of the adapted iSupport for Chinese dementia carers in New Zealand. These findings have implications for the development of future interventions that can more effectively address the specific needs of Chinese dementia carers.

Collaborative Dementia Care During the New Therapeutic Era

This Viewpoint advocates for the implementation of collaborative care with care navigation in the diagnosis and treatment of Alzheimer disease.

Symptom management for people with advanced dementia who are receiving end of life care.

This review aims to synthesise contemporary research on symptom management for people with advanced dementia who are thought to be in the final year of life. It highlights the unique challenges faced by palliative care and dementia care specialists, offering insights into the clinical decision-making required to support those with advanced dementia in various care settings. Recent studies indicate that people with advanced dementia often experience significant unmet palliative care needs, particularly regarding symptom management. Pain, breathlessness, and psychological distress are frequently mismanaged, which contributes to suboptimal care. Moreover, the unpredictable trajectory of dementia complicates the identification of end-of-life needs, which can result in fragmented care. Caregivers, both professional and family, struggle with managing complex symptoms, while family caregivers in home settings face added burdens in providing care without sufficient support. Palliative care for people with advanced dementia is currently inadequate due to a lack of tailored interventions, poor symptom management, and disjointed care systems. Enhancing training for caregivers, fostering interdisciplinary collaboration, and focusing on integrated care approaches across home and institutional settings are crucial to improving quality of life and symptom control for people with advanced dementia.

Capitalizing on Dementia Care Mapping in an Evaluation of a Montessori-Based Intervention for Individuals Living with Dementia.

Montessori-based interventions (MBIs) promote quality of life among older adults living with dementia. We used Dementia Care Mapping (DCM) to evaluate the impact of a small-scale MBI. DCM is a systematic observation tool that records the behavior and mood/engagement of individuals living with dementia and can be used to improve quality of care and well-being. Pre- and post-intervention data from 15 care community residents compared: 1) residents' range and types of behaviors, 2) their mood/engagement and 3) staff behaviors that facilitated and impeded residents' personhood. In this mixed-methods study, deductive qualitative content analysis of DCM field notes further explored staff behaviors. Post-intervention, a significantly higher proportion of residents' behaviors had the potential to promote their well-being, although there was little change in mood/engagement while engaging in those behaviors. Post-intervention, there was also a significant increase in staff behaviors that facilitated, and a decrease in staff behaviors that impeded, residents' personhood. Further, post-intervention, staff interactions with residents were more open-ended and inclusive. Although some staff behaviors still excluded residents, the exclusion was more benign than pre-intervention. DCM documented incremental changes toward person-centered care, and DCM field notes provided insight into missed opportunities for effective staff interactions with residents. Taken together, findings provide additional support for the use of MBIs and highlights the usefulness of DCM, especially its associated field notes, to help researchers and practitioners create environments that promote the personhood that individuals living with dementia deserve.

Validation and comparison of virtual reality and 3D mobile games for cognitive assessment against ACE-III in 82 young participants

Current medical and clinical ecosystem for dementia detection is inadequate for its early detection. Traditional cognitive assessments are introduced after cognitive impairment has begun to disrupt the real-world functioning of the person. Moreover, these tools are paper-pen based and fail to replicate the real-world situations wherein the person ultimately lives, acts and grows. The lack of tools for early detection of dementia, combined with absence of reliable pharmacological cure compound the problems associated with dementia diagnosis and care. Advancement of technology has facilitated early prediction of disease like cancer, diabetes, heart disease, but hardly any such translation has been observed for dementia or cognitive impairment. Given this background, we examine the potential of Virtual Reality (VR) and 3D Mobile-based goal-oriented games for cognitive assessment. We evaluate three games (2 in VR, one in mobile) among 82 young participants (aged 18–28 years) and compare and contrast the game-based results with their Addenbrooke Cognitive Examination (ACE-III) scores. Three main analysis methods are used: Correlative, Z-score and Regression analysis. Positive correlation was observed for ACE-III and game-based scores. Z-scores analysis revealed no difference between the two scores, and stronger statistical significance was found between game scores and cognitive health factors like age, smoking compared to ACE-III. Specific game performances also revealed about real-world traits of participants, like hand-use confusion and direction confusion. Results establish the plausibility of using goal-oriented games for more granular, time-based, and functional cognitive assessment.

Effects of traditional Chinese medicine on outcomes and costs of dementia care: results from a retrospective real-world study

ObjectivesThis study aims to assess the impact of Traditional Chinese Medicine (TCM) on dementia patients, utilizing real-world data. Specifically, it seeks to evaluate how TCM influences clinical outcomes by examining changes in the Clinical Dementia Rating (CDR) and Mini-Mental State Examination (MMSE) scores, as well as its effect on medical expenses over a two-year period. Data from a multi-center research database spanning from 2004 to 2021 will be used to achieve these objectives, addressing the current gap in empirical data concerning intuitive outcomes and cognitive function assessments.MethodsPropensity score matching was adopted to improve comparability among the intervention and control groups. Due to repeated dependent variable measurements, the generalized estimating equation was used to control for socio-demographic characteristics, regional characteristics, and Western medicine treatments for dementia.ResultsAfter propensity score matching, a total of 441 research subjects were included: 90 in the TCM intervention group and 351 in the non-TCM intervention group. The results of multivariate regression analysis showed that compared with the non-TCM intervention group, the MMSE scores in the TCM intervention group increased by 0.608 points each year. The annual change in CDR scores in the TCM intervention group was 0.702 times that of the non-TCM utilization group. After TCM intervention, annual outpatient expenses increased by US$492.2, hospitalization expenses increased by US$324.3, and total medical expenses increased by US$815.9, compared with the non-intervention group.ConclusionsTCM interventions significantly decelerate cognitive decline in dementia patients, evidenced by slower reductions in MMSE scores and mitigated increases in CDR scores. However, these benefits are accompanied by increased medical expenses, particularly for outpatient care. Future healthcare strategies should balance the cognitive benefits of TCM with its economic impact, advocating for its inclusion in dementia care protocols.

A mixed-methods evaluation of a dementia education program for hospital staff and volunteers in Melbourne, Australia

ABSTRACT People with dementia have a high likelihood of being hospitalized at some point during the disease process. Recent research has found that more can be done to improve dementia care in hospitals. One of the strategies suggested to help achieve this objective is to provide dementia education programs to hospital staff. Such programs have the potential to improve the knowledge, attitudes, and skills of staff in caring for people with dementia to optimize their in-hospital experiences and clinical outcomes. This paper reports a mixed-methods evaluation of a dementia education program delivered to staff at a hospital in Melbourne, Australia. The quantitative evaluation found significant improvements in participant’s knowledge of dementia but did not show significant improvements in “social comfort,” a measure of how comfortable respondents are around people with dementia. Qualitative interview data supported the quantitative finding regarding improvements in knowledge about dementia and demonstrated participants were largely satisfied with the content of the education program. However, qualitative data also indicated a problem with engagement with some non-clinical staff. There is a need to improve the quality of care for patients with dementia in hospitals, and this study shows that a dementia education program can be effective in improving staff knowledge about people with dementia.

Occupational therapists’ perspectives on welfare technologies for dementia: exploring recommendation frequencies – a pilot study

Background Occupational therapists have long been recognized for their expertise in welfare technology use, particularly in the context of dementia care. Despite this advanced training, however, there is often a gap between their knowledge of available technologies and the frequency with which they recommend these tools to individuals with dementia. Aims/objectives This study explores the perspectives of occupational therapists on the recommendations of welfare technologies for individuals with dementia. Materials and methods A survey was created with the assistance of an expert group in a Swedish municipality. The survey consisted of 26 questions (demographics, background/workload, perceptions of welfare technologies, accessibility/information and knowledge on how and when to use, and initiation of contact and recommendation frequency) and was distributed to 60 occupational therapists within the selected municipality. We received a total of 29 responses. The responses were then analyzed qualitatively for meaningful insights across various themes. Using an encoding scheme, a statistical analysis of the responses was performed to uncover potential trends in the distribution of the responses. Results Results indicate positive perceptions of welfare technologies by occupational therapists, but a low frequency of recommendations for individuals with dementia. Conclusions and significance Based on the results, we find it important to advocate for more educational opportunities for occupational therapists regarding welfare technologies and improved organizational structures that promote their understanding and ultimately benefits of recommending welfare technologies to individuals with dementia.

What are the research priorities in dance for dementia? A co-created agenda to support equitable research

ABSTRACT Background There is a gap in the field of dance for dementia regarding how to engage in and improve equitable, moral, and rights-based ways of working with those with lived experience to co-design research priorities. We set out to create a collaborative research agenda for this field. Methods A series of collaborative activities were conducted, including an in-person workshop (n = 59 people), online workshop (n = 23 people), digital communications, podcasts, and co-writing, including with people living with dementia (PLWD), health and social care professionals, artists, arts organisational representatives, and academic researchers. Results Three key themes were constructed: 1) Improving access to dance participation; 2) Prioritising co-produced approaches; and 3) Enabling innovation in measurement and methods. Conclusion This is the first co-produced agenda for the field of dance for dementia. Underpinned by diverse perspectives and lived experience, it outlines themes and associated research questions that can be used in future research.

Neuropsychiatric presentations of common dementia syndromes: A concise review for primary care team members.

Dementia is a syndrome characterized by cognitive changes which interfere with daily functioning. Neuropsychiatric symptoms (NPS) are also pervasive and may even occur prior to any noticeable cognitive decline. Still, NPS are less associated with the early stages of the disease course, despite mounting research evidence that NPS present early and often in several dementia syndromes, even in the absence of cognitive decline (i.e., mild behavioral impairment [MBI]). Primary care teams are at the forefront of dementia care, yet they frequently report insufficient training in dementia diagnosis and management. This poses a serious problem considering that timely diagnosis of dementia is critical for optimal outcomes and maximum efficacy of intervention. We provide a concise narrative review of four dementia syndromes (Alzheimer's disease, vascular dementia, dementia with Lewy bodies, and behavioral variant frontotemporal dementia) and their associated neuropsychiatric presentations, as well as at-a-glance clinical guides, to help primary care team members recognize possible prodromal neurodegenerative disease and to prompt further workup. We also review next steps in the management of dementia and symptoms of MBI for primary care team members. As evidenced by the NPS profiles of these dementia syndromes, subacute new onset of psychiatric symptoms in an older adult should prompt consideration of an emerging dementia process and possible further workup of such, even in the absence of cognitive decline.

Ethical self-efficacy among healthcare professionals caring for people with dementia: a brief pre- and post-report on the CARE intervention

BackgroundInterventions targeting healthcare professionals’ confidence in managing ethical issues in dementia care are limited despite documented positive effects of educational programs on staff knowledge and self-efficacy. However, inconsistencies in the literature regarding the impact of educational programs underscore the need for targeted interventions. The CARE intervention, specifically designed to enhance confidence in ethical decision-making, aims to address this gap. This study evaluates the effectiveness of the CARE intervention in enhancing the ethical self-efficacy of healthcare professionals caring for people with dementia, particularly those with initially low levels of self-efficacy.MethodsUsing a non-experimental pre-post evaluation design, the CARE intervention was administered to healthcare professionals (n = 86), measuring ethical self-efficacy pre-and post-intervention. We hypothesized significant differences in ethical self-efficacy mean scores pre- and post-intervention for all participants, particularly those with low pre-measurement scores, whom we expected to benefit most from the intervention. Statistical analysis included paired t-tests and Wilcoxon tests for the low pre-measurement subgroup analysis.ResultsWhile no significant change was observed in the entire sample, participants with low initial self-efficacy showed a statistically significant improvement post-intervention.ConclusionsThe CARE intervention holds promise in improving ethical self-efficacy among healthcare professionals with initial low confidence levels. Targeted interventions are essential in addressing confidence gaps in managing ethical challenges in dementia care, with implications for professional well-being and quality of care. Further research should explore long-term effects and expand sample size to enhance generalizability and sustainability of findings.