Dementia Care Team Research Articles

Influence of care modes and social resources on psychotropic medication use in community-dwelling dementia patients.

Optimal use of psychotropic medications for people living with dementia is important. By finding potentially modifiable factors, dementia care teams may find solutions to achieve the appropriate use of psychotropic drugs. This study aimed to elucidate patient and caregiver factors associated with the use of psychotropic drugs listed in the potentially inappropriate medications (PIMs) in community-dwelling people with dementia. This cross-sectional study enrolled 808 patients newly diagnosed with dementia, and their caregivers, from a dementia clinic at Changhua Christian Hospital. Patient and caregiver characteristics, care mode, and social resource usage were recorded. Multivariate logistic regression was used to identify factors associated with prescribing psychotropic medications. Of all the participants, 39.1% used at least one of psychotropic medication categorized as PIM. Patients with frontotemporal dementia, with behavior or psychological symptoms, or cared by sole foreign care workers; caregivers with higher depression scores, employed or non-spouse caregivers carried a higher risk of prescription of psychotropic medications listed in PIMs. Psychotropic drug prescriptions are associated with patient and caregiver factors. Therefore, implementing appropriate interventions, especially those targeting potentially modifiable factors, is important to reduce psychotropic medication use.

THE ESSENTIAL ROLE OF PAID CAREGIVERS IN HOME-BASED DEMENTIA CARE

Abstract Paid caregivers (e.g., home health aides, other home care workers) provide essential support to the rapidly growing number of people with dementia living in the community. This symposium presents innovative findings on the role of paid caregivers in home-based dementia care though exploration of the clinical, family, and care-delivery contexts in which paid caregivers work. First, Reckrey et al describe the scope of paid caregiving in dementia using nationally representative data examining factors associated with receipt of paid care among older adults with overlapping dementia and non-dementia serious illness. Next, we examine mechanisms of delivering paid care: Osakwe et al explore paid caregiver perceptions about the use of telehealth in home health and identify paid caregivers concerns about routine use of this technology in care of people with dementia, and Gordon-Wexler et al explore family caregiver perspectives on navigating Medicare and Medicaid insurance for people with advanced dementia and the challenges they experience coordinating paid care. Finally, we explore how paid caregivers work with other care team members. Quach et al discuss multidisciplinary perspectives about how paid caregivers support person-centered and relationship-centered care to family dementia caregivers, while Fabius et al examine information sharing practices within home care agencies and describe differences and similarities in information sharing needs for people with and without dementia. Taken together, these presentations highlight the important ways that paid caregivers work with providers and families within the care delivery system and identify ways to better support and integrate these essential workers into dementia care teams. This is a Paid Caregiving Interest Group Sponsored Symposium.

Individualized Coordination and Empowerment for Care Partners of Persons with Dementia (ICECaP): Study rationale and protocol

The majority of care for >10 million older adults with dementia (PWD) in the United States depends on at least on 11 million unpaid care partners (CPs). CPs are at greater risk of adverse physical, psychological, and cognitive health outcomes relative to non-caregiving peers. The goal of this paper is to establish the rationale, design, and protocol for a pilot randomized control trial to test the efficacy of the CP-focused intervention, ICECaP: Individualized Coordination and Empowerment for Care Partners of Persons with Dementia. ICECaP involves the assignment of a trained dementia care coordinator to a CP. The care coordinator maintains at least monthly contact with the CP with hybrid delivery (in-person, phone, e-mail, and video calls) and provides individualized support with care coordination for the CP navigating the PWD's care in a complex healthcare system, as well as supportive counseling, psychoeducation, and skills training for the CP. This trial will compare outcomes from baseline to 12-months among CPs who receive ICECaP versus routine care (controls). Outcomes include CP depression, burden, anxiety, and quality of life; CPs' reactions to the behavioral symptoms of dementia; and use of support services for the PWD. This trial will also assess mechanisms of intervention efficacy including changes in CP dementia knowledge, caregiving preparedness, self-efficacy, and optimism. Publication of this intervention protocol will benefit other dementia care teams seeking to support CPs and PWDs.

Volunteers' experiences building relationships with long-term care residents who have advanced dementia.

Healthcare volunteers make important contributions within healthcare settings, including long-term care. Although some studies conducted in long-term care have shown that volunteers contribute positively to the lives of people living with advanced dementia, others have raised questions about the potential for increasing volunteers’ involvement. The purpose of this study is to understand volunteers’ perspectives on their work and relationships with long-term care residents with advanced dementia. A total of 16 volunteers participated in semi-structured interviews about their experiences. Interview data were analyzed using an inductive approach to thematic analysis. In this analysis, a central concept, relationships in dementia care volunteering, enveloped four related themes: mutuality and empathy as the foundation for dementia care relationships with residents, family as the focus of volunteer relationships, relationships shaped by grief, and staff support for volunteer relationships. We conclude that in long-term care settings, volunteer roles and relationship networks are more robust than they are often imagined to be. We recommend that long-term care providers looking to engage volunteers consider training and supporting volunteers to cultivate relationships with residents, family, and staff; navigate experiences of loss; and be considered as members of dementia care teams.

Occupational adaptation as a social process for dementia care teams

Background Few studies have examined a group’s collective experience of occupation using occupational therapy theoretical models. Dementia caregiving requires a diverse team of caregivers who learn and work together to resolve shared challenges. An Occupational Adaptation (OA) theory-based training program for dementia care teams was developed to better understand the team’s adaptive process inherent in cooperative caregiving. Aim/objectives Describe how the team learned together and how the training impacted their teamwork. Materials/methods Fourteen employees at one continuing care retirement community underwent OA-based training. During the program, the team analysed and resolved challenging dementia care cases. Participant observations, participant journals, open-ended surveys, and follow-up semi-structured interviews were analysed. Results The thematic framework included five steps: unite around a shared challenge, tap the collective adaptive repertoire, collaborate on case-specific plans, implement with teamwork, and return for ongoing problem solving and integration. The program enhanced appreciation for teammates’ knowledge, skills, and experiences, learning from each other, and integration of team-centered OA process. Conclusion/significance The OA-based program appears to have facilitated adaptation that was complex, social, and generalisable. OA theory is enriched with a social view of occupational adaptation opening new opportunities for therapists and researchers to understand and facilitate adaptation among teams.

The Pedagogy of Reciprocity in Digital Applied Theatre Practice: The antithesis to unjust responses to the COVID-19 pandemic that have devalued and ignored the rights and lives of older adults living with dementia

In this article, I will offer case study insights into the value of digital applied theatre practice that has evolved to remain person-centred, valuing what Gail Mitchell et al. (2020) termed a ‘relational ethic of care' that seeks to enable active citizenship at the heart of hospital-based practice for patients living with dementia. ‘Innovating Knowledge Exchange: Student Involvement in Delivering Better Patient Experience in the NHS (National Health Service)', is a digital applied theatre project jointly funded by Research England and the Office for Students, in partnership with Imperial College Healthcare NHS Trust's Dementia Care Team. The project offers six interventions that happen via zoom to support patients living with dementia who have had little social interaction and thereby cognitive stimulation in COVID-19 and medicine for the elderly wards. The emphasis of each project is to create bespoke workshops that embody a term I have coined, a ‘pedagogy of reciprocity', which is an approach that has evolved over the course of the translation and implementation of the project practice in a digital form. The relationship between arts and health has a long, rich history, but recently known models of practice have either stopped or had to adapt to happen online through digital practice. Moving to online interventions can be exclusionary for artist practitioners who are less familiar with platforms such as Teams, Zoom, Google Meet and Skype, and for those who are familiar, the challenge of ensuring meaningful participation has been complicated. However, the need to continue to be responsive practitioners is vital, and the urgency for arts intervention to support positive wellbeing in the midst of the pandemic has only grown. Arts and healthcare hold a long-standing relationship that should not be compromised because of the necessity to traverse new terrain by entering the domain of the digital, I will argue that in fact this process is vital, and one that I will unpack and interrogate from my own experience working in a hospital during our third national UK lockdown and continuing digital arts and health projects. The reality of the pandemic and the severity of its impact on the mental health and wellbeing of older adults is profound. The International Psychogeriatric Association have discussed the ongoing impact on the mental health and wellbeing of older adults forced to socially isolate. This circumstance is unavoidable for the prevention of the spread of COVID-19, but the fear of contracting COVID-19, or not receiving hospital treatment for particular age brackets, and the impact of not being able to socialise with family and friends is causing a rise in suicide, anxiety, agitation and loneliness. Myrra Vernooij-Dassen (2020) argues that social, mental and cognitive health are not considered by policy makers, and the impact of a lack of social health for people living with dementia is particularly detrimental causing conditions to rapidly deteriorate without social interactions. In this article, I will set out the conceptual framework for the pedagogy of reciprocity as a methodology for responsive digital applied theatre practice that has emerged directly from my experience running projects in the pandemic in acute hospital settings.

A Comparison of Caregiver Burden for Different Types of Dementia: An 18-Month Retrospective Cohort Study.

BackgroundThis study aimed to elucidate the influence of dementia etiologies on the degree of caregiver burden and determine which factors predict a high caregiving burden.MethodsThis 18-month retrospective cohort study enrolled 630 patients and their caregivers from the Dementia Center of Changhua Christian Hospital. The care team performed face-to-face interviews every 6 months, for 18 months from when a diagnosis of dementia was made. The primary outcome was the change in Zarit Burden Interview (ZBI) scores. Generalized estimating equations were used for the longitudinal data analysis.ResultsParticipants with Lewy body disease (LBD) had a significantly higher caregiving burden compared with those with Alzheimer's disease (AD) (β = 3.83 ± 1.47, Wald = 6.79, p = 0.009) after adjusting for patient and caregiver features. Caregivers of mixed-type dementia and frontotemporal dementia (FTD) experienced a greater burden than caregivers of AD, at 6- and 18-month follow-up. Patients with more severe dementia, neuropsychiatric symptoms, being cared for by more than two caregivers, or utilizing social resources were associated with higher ZBI scores; the depressive mood of caregiver also predicted higher ZBI scores.ConclusionThis longitudinal study demonstrated that caregiver burden was influenced by the underlying dementia etiology of patients. The dementia care team should provide personalized education and transfer patients and caregivers to appropriate resources, especially for high-risk populations.

Quality home care for persons living with dementia: Personal support workers' perspectives in Ontario, Canada.

There is a global need to understand how the quality of home care for persons living with dementia is perceived by their most frequent formal caregivers, personal support workers (PSW), especially given the expected rise in the prevalence of dementia. The aim of this study was to explore the perceptions of PSW regarding what constitutes quality home care for persons with dementia. Qualitative content analysis was undertaken to interpret semi-structured interviews with PSW (N=15). Study findings indicate that quality home care is perceived to be (1) person-centered; (2) provided by PSW with dementia-specific education and training; (3) facilitated by specific PSW experiences, abilities and characteristics; (4) enhanced by accessible information, services and education for persons with dementia and their caregivers; (5) provided by an inclusive dementia care team; and (6) facilitated by organisational supports and respect. However, findings also indicated differences in what PSW perceive as quality home care versus what they are experiencing when providing care for persons with dementia. Participants advocated for increased supports to them through ongoing dementia-specific education and training, increased teamwork among care providers, increased wages, sufficient and qualified staffing, and increased exchange of client information. The findings highlight the importance of exploring front-line workers' perspectives and how they can help revise current healthcare policies and inform future policy development.

Who Provides Care in a Crisis? Family Caregivers’ Experiences of Home Care During the COVID-19 Pandemic

Many homebound individuals with dementia rely on both paid caregivers (e.g., home health aides, home attendants, other homecare workers) and family caregivers to live safely at home. We conducted semi-structured interviews with 15 family caregivers of individuals with severe dementia receiving home-based primary care in NYC to explore how caregiving changed during the COVID pandemic. Most individuals with long-standing paid caregivers experienced infrequent home care disruptions. In fact, paid caregivers were often the primary and sometimes only individuals to provide direct care; family caregivers themselves often stayed away and managed care from a distance. While most family caregivers described heightened attention to infection control, guidance about COVID prevention and safety rarely came from home-based primary care providers or home care agencies and instead was considered “common sense.” These findings confirm the essential role paid caregivers play in home-based dementia care teams.

Outcomes of Team-Centered, Occupational Adaptation-Based Versus Traditional Dementia Workforce Training.

Background. Dementia workforce training aligned with Occupational Adaptation (OA) theory may facilitate teams resolving challenges in the care environment more than traditional skills-based (SB) training, although comparisons are needed. Purpose. This pilot study compared effectiveness of an OA and SB program on relative mastery and team development for dementia care teams at a continuing care retirement community. Method. In a quasi-experimental study, employees underwent nine sessions in an OA or SB program. Relative Mastery Measurement Scale and Team Development Measure results were collected pre-, mid-, post-intervention. A 3 × 2 ANOVA determined differences in group score changes across time. Findings. Data from 28 employees (14/group) showed group-by-time interaction reached statistical significance for both relative mastery (F = 3.17, df = 2, p = .05) and team development (F = 8.38, df = 2, p = .001). Implications. OA-based training may improve dementia care teams' collaborative mastery over real-world challenges. While preliminary findings inform program developers, further research must explore clinical effectiveness.

Intervention of dementia support team pharmacists and its effects for the proper use of rivastigmine.

Pharmacist participation in the medical team is expected in dementia care. We investigated the use of rivastigmine, the intervention of pharmacists for its proper use, and its effects. The number of prescription proposals from the dementia care team pharmacist to the doctor was 87, and the number of acceptances was 57. The content of the proposal was 31/52 for additions/changes (number of acceptances/number of proposals), 21/28 for dose increase, 3/4 for discontinuation of administration, 2/2 for usage changes, and 1/1 for others. In increasing the dose, the number of patients who increased the maintenance dose to 18 mg was significantly higher in the group with the intervention of the pharmacist in the dementia care team than in the group without the intervention (3/12 cases vs. 0/24 cases, p = 0.031). The dose of the brought-in drug also significantly increased with pharmacist intervention compared with that in the non-intervention group (7/12 cases vs. 1/24 cases, p <0.001). The pharmacists of the dementia care team often intervened in the proper use of rivastigmine, which was found to be effective when increasing the dose. Thus, we believe that the active participation of pharmacists is necessary in dementia medication.

Paid Caregivers in the Community-based Dementia Care Team: Do Family Caregivers Benefit?

Older adults with dementia often rely on both paid caregivers (ie, home health aides, personal care attendants, other direct care workers) and family caregivers (ie, spouses, children, other unpaid individuals) to remain in the community. This study conceptualizes paid caregivers as part of the collaborative dementia care team and examines the association between receipt of paid care and primary family caregiver experience. Using data from 3 waves (2011, 2015, and 2017) of the National Health and Aging Trends Study linked to the National Study of Caregiving, community-dwelling Medicare beneficiaries aged ≥67 years with advanced dementia (n = 338 observations) were identified. Primary family caregiver experiences were compared among those with zero, part-time (<40 hours/week), and full-time (≥40 hours/week) paid care, and multivariable models were used to evaluate the associations between full-time paid care and family caregiver strain (eg, being overwhelmed due to caregiving) and activity restriction (eg, being unable to work for pay due to caregiving). About one half of the community-dwelling older adults with advanced dementia received paid care: 30% had part-time paid care and 18% had full-time paid care. The experiences of family caregivers of those receiving part-time and no paid care were not significantly different. After adjusting for family caregiver and care recipient characteristics, receipt of full-time paid care was associated with a nearly 70% reduced odds of having activity restrictions due to caregiving (odds ratio, 0.31; P = 0.01) and a reduction in mean caregiver strain score (-0.73; P = 0.04). There was no statistically significantly association between the odds of high caregiver strain (score ≥5) and receipt of paid care (odds ratio, 0.65; P = 0.33). The provision of paid care for individuals with dementia in the community may benefit family caregivers. Future work should acknowledge the important ways that paid caregivers contribute to outcomes for all members of the collaborative dementia care team.

Characteristics Predicting a High Caregiver Burden in Patients with Vascular Cognitive Impairment: Using the Apriori Algorithm to Delineate the Caring Scenario.

PurposeThe aim of this study was to elucidate the factors and caring scenarios associated with a moderate to severe care burden in the caregivers of patients with vascular cognitive impairment (VCI).Patients and MethodsThis cross-sectional study included 158 patients with VCI and their caregivers who were managed by the dementia collaborative care team at Changhua Christian Hospital, Taiwan. Gender, age, clinical dementia rating, walking ability, behavioral symptoms, and psychological symptoms were the variables from the patients with VCI. Age, marital status, relation to the VCI patient, education, employment status, help of key activities, type of primary care, frequency of care, ZBI (Zarit burden interview) caregiving burden, and caregiver’s mood were the evaluated variables for the caregivers. The Apriori algorithm was used to identify the attributes that resulted in different caregiving burdens from a comprehensive viewpoint of both VCI patients and their caregivers.ResultsA total of 1193 rules were identified with 1134 rules belonging to caregivers with a mild to moderate burden and 59 rules belonging to caregivers with a moderate to severe burden. Seven general rules were created based on a summary of these 59 rules. The results showed that an employed female caregiver who was taking care of her husband alone for ≥6 days per week, and who was helping with all key activities was likely to experience a moderate to severe burden when the patient had VCI. Moreover, if the caregiver had a relatively low education level and expressed an abnormal mood during the assessment, this increased the likelihood of the caregiver having a moderate to severe burden.ConclusionThe caregiver’s gender, relation to the care recipient, education level, mood status, employment status, and care loading were associated with a higher burden of care for caregivers of patients with VCI. Therefore, a dementia care team should provide personalized training for caregivers about the disease, care skills for specific behaviors and psychological symptoms of dementia (BPSD), and strategies to cope with their own feelings. Caregivers should also be referred to appropriate social resources, such as support groups or respite care.

&lt;p&gt;Care Needs of Community-Residing Male Patients with Vascular Cognitive Impairment&lt;/p&gt;

PurposeThe aim of this study was to identify the care needs of male patients with vascular cognitive impairment (VCI) and their caregivers.Patients and MethodsThis cross-sectional study enrolled 389 male patients with VCI and their caregivers who were cared for by the dementia collaborative care team at Changhua Christian Hospital, Taiwan. Fifteen care needs consisting of most of quality measures for people living with dementia and their caregivers were developed by the care team. Through face-to-face evaluations, individualized care needs were collected. The Apriori algorithm was used to identify care bundles for the patients and their caregivers.ResultsSix basic care needs for patients and their caregivers were identified, including appropriate schedule of activities, regular outpatient follow-up treatment, introduction and referral of social resources, referral to family support groups and care skills training, care for the mood of the caregiver, and health education for dementia and behavioral and psychological symptoms of dementia. Compared to subjects with all dementia subtypes from the previous studies, care for the mood of the caregiver was an important and frequent care need for the male patients with VCI and their caregivers. A comparison among the study and similar studies was made to highlight the strength of this study concentrating on the precise selection of care needs.ConclusionCollaborative dementia care teams should monitor for caregivers’ depression and include this care need into the care bundle when assessing male subjects with VCI.

Comparing Occupational Adaptation-Based and Traditional Training Programs for Dementia Care Teams: An Embedded Mixed-Methods Study.

With a growing demand for a dementia-capable workforce, attention shifts from disseminating knowledge of care strategies to facilitating teams translating knowledge into practice. Occupational Adaptation (OA) is a theoretical framework used to facilitate people resolving real-world challenges through active problem-solving, using relative mastery as its measure. This pilot study evaluated if and how OA-based training improves dementia care teams' relative mastery and team development more than a skills-based (SB) program. We report results of an embedded mixed-methods study with 28 employees of a continuing care retirement community (2 groups randomly assigned to 9-week programs). Data collection entailed 2 surveys conducted pre-, mid-, and postintervention; observations; journals; and follow-up interviews. We extended beyond quantitative and qualitative analyses with cross-cutting analyses exploring exemplar and exceptional cases. The OA group reported significantly greater improvements in relative mastery and team development (p < .05). Qualitative data supported the statistical findings and illuminated processes that led OA to outperform SB. OA participants, those who analyzed real cases and alternated collaborative planning with cooperative action, were more likely to indicate pre-post differences in relative mastery and team development. We identified features of the OA program that diverse participants deemed effective; features that suggest how OA could underpin clinically relevant learning for workers. Further research is required to develop evidence of clinical effectiveness; however, our findings have relevance for agencies wishing to promote knowledge translation and collaborative problem-solving in dementia workforce training.

Wonder VR: Interactive Storytelling through VR 360 Video with NHS Patients Living with Dementia

Between January 2019 and March 2020, I co-created a project entitled Wonder VR in collaboration with a Clinical Nurse, Natascha Teszner, who is part of a Dementia Care Team. Our VR360 project (Wond...

Telegerontology as a Novel Approach to Address Health and Safety by Supporting Community-Based Rural Dementia Care Triads: Randomized Controlled Trial Protocol.

BackgroundTelegerontology is an approach using videoconferencing to connect an interdisciplinary team in a regional specialty center to patients in rural communities, which is becoming increasingly practical for addressing current limitations in rural community-based dementia care.ObjectiveUsing the remotely-delivered expertise of the Telegerontology dementia care team, we aim to enhance the caregiver/patient/physician triad and thereby provide the necessary support for the person with dementia to “age in place.”MethodsThis is a cluster randomized feasibility trial with four rural regions in the province of Newfoundland and Labrador, Canada (2 regions randomly assigned to “intervention” and 2 to “control”). The study population includes 22 “dementia triads” that consist of a community-dwelling older Canadian with moderate to late dementia, their family caregivers, and their Primary Care Physician (PCP). Over the 6-month active study period, all participants will be provided an iPad. The intervention is intended as an adjunct to existing PCP care, consisting of weekly Skype-based videoconferencing calls with the Telegerontology physician, and other team members as needed (occupational therapist, physical therapist etc). Control participants receive usual community-based dementia care with their PCP. A baseline (pre-) assessment will be performed during a home visit with the study team. Post intervention, 6- and 12-month follow-up assessments will be collected remotely using specialized dementia monitoring applications and Skype calls. Primary outcomes include admission to long-term care, falls, emergency room visits, hospital stays, and caregiver burden.ResultsResults will be available in March of 2018.ConclusionsResults from this study will demonstrate a novel approach to dementia care that has the potential to impact both rural PCPs, family caregivers, and people with dementia, as well as provide evidence for the utility of Telegerontology in models of eHealth-based care.

An Occupational Therapy Intervention for People With Dementia

The percentage of individuals with dementia worldwide is increasing with the continued trend toward global trend overall. As options for the medical treatment of dementia remain limited, combined, non-pharmacological interventions are necessary to maintain and slow the degeneration of functional capabilities. Additionally, there is a need to help caregivers develop better patterns of care and methods to reduce the burden of care. Therefore, occupational therapists play an important role in the dementia care team. This article introduces how occupational therapists help dementia patient maintain their functional capabilities and delay degeneration and help caregivers reduce their burden of care. Both activities are based on the concept of occupational therapy, which includes three important components: people, activities, and the environment.

The Role Development and Future of Dementia Nurse Specialists

The impact of aging on society is comprehensive and profound. Dementia is a key representative disease / condition of aging societies. The complexity of the course, behavior, and psychiatric symptoms of this disease often burdens families and challenges professional caregivers. Thus, dementia is a growing problem in healthcare that cannot be ignored. As nurses are the healthcare professionals that are most frequently in contact with dementia patients and their families, they occupy a pivotal position in the dementia care team. The present study analyzes the current problems encountered in caring for dementia patients in different care settings, highlights the current difficulties encountered in dementia-care policy and practice in Taiwan, and reviews the development and role of clinical nurse specialists in dementia care in several developed countries. Finally, we propose relevant policy, practice, organizational, and future research recommendations. The content of this paper may be used as a reference for related policymaking and in the promotion of the advanced nursing care role in dementia care.

Integrated community-based dementia care: the Geriant model.

This article gives an in-depth description of the service delivery model of Geriant, a Dutch organization providing community-based care services for people suffering from dementia. Core to its model is the provision of clinical case management, embedded in multidisciplinary dementia care teams. As Geriant's client group includes people from the first presumption of dementia until they can no longer live at home, its care model provides valuable lessons about how different mechanisms of integration are flexibly put to use if the complexity of clients" care needs increases. It showcases how the integration of services for a specific sub-population is combined with alignment of these services with generalist network partners. After a detailed description of the programme and its results, this article builds on the work of Walter Leutz for a conceptual discussion of Geriant's approach to care integration.