scholarly journals Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study

JMIR Aging ◽  
10.2196/24965 ◽  
2021 ◽  
Vol 4 (1) ◽  
pp. e24965
Author(s):  
Magaly Ramirez ◽  
Miriana C Duran ◽  
Chester J Pabiniak ◽  
Kelly E Hansen ◽  
Ann Kelley ◽  
...  
Keyword(s):  
Health Care ◽  
Training Program ◽  
Family Caregivers ◽  
Psychological Symptoms ◽  
Challenging Behaviors ◽  
Care Organization ◽  
Virtual Training ◽  
People With Dementia ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Background Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.

scholarly journals Virtual Training for Managing Behavioral and Psychological Symptoms of Dementia: A Qualitative Study of Family Caregiver Needs and Preferences (Preprint)

2020 ◽  
Author(s):  
Magaly Ramirez ◽  
Miriana Duran ◽  
Chester J Pabiniak ◽  
Kelly E Hansen ◽  
Ann Kelley ◽  
...  
Keyword(s):  
Training Program ◽  
Family Caregivers ◽  
Psychological Symptoms ◽  
Challenging Behaviors ◽  
Hybrid Approach ◽  
Virtual Training ◽  
Design Elements ◽  
People With Dementia ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

BACKGROUND Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-C Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. Our pragmatic randomized trial (clinicaltrials.gov #NCT04271046) used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. OBJECTIVE The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. METHODS Between July and September 2020, we conducted 15 semi-structured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. RESULTS The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said healthcare providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the healthcare organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem-solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (e.g., face-to-face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. CONCLUSIONS Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

2021 ◽  
pp. 019394592110557
Author(s):  
Melissa L. Harris ◽  
Marita G. Titler
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Behavioral Responses ◽  
Well Being ◽  
Comparative Methods ◽  
People With Dementia ◽  
Effective Care ◽  
Exploratory Approach ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.

scholarly journals Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral Symptoms of Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 2-3
Author(s):  
Magaly Ramirez ◽  
Miriana Duran ◽  
Chester Pabiniak ◽  
Kelly Hansen ◽  
James Ralston ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Hybrid Approach ◽  
Healthcare Providers ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Virtual Training ◽  
Study Objective ◽  
People With Dementia ◽  
Traditional Service

Abstract STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that teaches family caregivers to manage behavioral and psychological symptoms of dementia (BPSD). The study objective was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. We conducted 15 semi-structured interviews with family caregivers of people with dementia. We showed caregivers prototypes of STAR-VTF online self-directed materials. We obtained caregiver feedback, focusing on needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said healthcare providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the healthcare organization to offer programs such as STAR-VTF much sooner. Many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities. Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers reported a preference for having the same coach for the program duration.

Overview

2000 ◽  
Vol 12 (S1) ◽  
pp. 13-18 ◽  
Author(s):  
Sanford I. Finkel ◽  
Alistair Burns ◽  
Gene Cohen
Keyword(s):  
Psychiatric Symptoms ◽  
Psychological Symptoms ◽  
Effective Management ◽  
Proxy Report ◽  
Psychological Reactions ◽  
People With Dementia ◽  
Person With Dementia ◽  
Assessment Scales ◽  
Behavioral And Psychological Symptoms ◽  
Careful Assessment

DIAGNOSIS AND ASSESSMENTBehavioral and psychological symptoms of dementia (BPSD) can be defined as “a term used to describe a heterogeneous range of psychological reactions, psychiatric symptoms, and behaviors occurring in people with dementia of any etiology.” The basis of the diagnosis of individual components that make up BPSD revolves around a clinical interview, direct observation of the person with dementia, or a proxy report from a carer or other observer. The three approaches often need to be combined, and some assessment scales rely more on one approach than on another. The key to an accurate diagnosis of BPSD and its effective management lies in a careful assessment of the person with dementia, including carer input.

scholarly journals A Systematic Review and Meta-Analysis Comparing Carer Focused and Dyadic Multicomponent Interventions for Carers of People With Dementia

2016 ◽  
Vol 29 (8) ◽  
pp. 1308-1349 ◽  
Author(s):  
Kate Laver ◽  
Rachel Milte ◽  
Suzanne Dyer ◽  
Maria Crotty
Keyword(s):  
Systematic Review ◽  
Psychological Symptoms ◽  
Meta Analysis ◽  
Randomized Controlled ◽  
People With Dementia ◽  
Significant Difference ◽  
Person With Dementia ◽  
Multicomponent Interventions ◽  
Behavioral And Psychological Symptoms

Objective: The aim of this study was to compare the efficacy of two approaches: multicomponent interventions that focus on working with the carer and dyadic interventions that work with both the carer and the person with dementia. Method: A systematic review involving a search of Medline, EMBASE, and PsycINFO in October 2015 was performed. Randomized controlled trials involving carers of people with dementia and comparing multicomponent interventions with usual care were included. Results: Pooling of all studies demonstrated that multicomponent interventions can reduce depressive symptoms, improve quality of life, reduce carer impact, and reduce behavioral and psychological symptoms of dementia as well as caregiver upset with these symptoms. We were unable to find a significant difference in the effects of dyadic interventions in comparison with carer focused interventions for these outcomes. Discussion: Although effect sizes associated with intervention are small, multicomponent interventions are relatively inexpensive to deliver, acceptable, and widely applicable.

scholarly journals Developing a virtual reality for people with dementia in nursing homes based on their psychological needs: a feasibility study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jung-Hee Kim ◽  
Seonmin Park ◽  
Hyeongji Lim
Keyword(s):  
Virtual Reality ◽  
Nursing Homes ◽  
Intervention Program ◽  
Psychological Symptoms ◽  
Likert Scale ◽  
Psychological Needs ◽  
Second Phase ◽  
People With Dementia ◽  
The Mean ◽  
Behavioral And Psychological Symptoms

Abstract Background The purpose of this study was (1) to develop a virtual reality (VR) intervention program based on the psychological needs of patients residing in nursing facilities in South Korea to alleviate their behavioral and psychological symptoms and (2) to confirm the possibility of utilizing VR in patients with dementia. Methods In the first phase, patients with dementia residing in nursing homes and experiencing behavioral and psychological symptoms were recruited. Surveys and questionnaires were used to identify activities that alleviated the behavioral and psychological symptoms of dementia (BPSD) among the patients. These activities were classified into five types of psychological needs. In the second phase, a fully immersive, interactive, easy-to-use VR platform was developed that reflected these psychological needs. Patients with dementia experienced the VR content. The researchers assessed the level of the participants’ immersion, preference, and interaction with the VR using a 5-point Likert scale. Results In the feasibility test, 10 nursing home residents were recruited. The mean immersion score was 4.93 ± 0.16 points, the mean preference score was 4.35 ± 0.41 points, and the mean interaction score was 3.84 ± 0.43 points using a 5-point Likert scale. Higher mean scores indicated a more positive outcome. Six of the 10 participants required assistance while using the VR. The mean VR experience duration was 10.00 ± 3.46 min. Conclusions The VR-based intervention program that was developed to reduce BPSD was feasible for the participants and provided them with a high degree of satisfaction and immersion. Furthermore, this study also confirmed the convenience and safety of the program. These findings support the potential use of VR-based BPSD intervention programs to treat patients with dementia.

scholarly journals “I’ve learned to just go with the flow”: Family caregivers’ strategies for managing behavioral and psychological symptoms of dementia

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 590-605 ◽  
Author(s):  
Courtney A Polenick ◽  
Laura M Struble ◽  
Barbara Stanislawski ◽  
Molly Turnwald ◽  
Brianna Broderick ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Clinical Care ◽  
Well Being ◽  
Dementia Caregivers ◽  
Targeted Interventions ◽  
Care Partners ◽  
Group Data ◽  
Focus Group Data ◽  
Behavioral And Psychological Symptoms

Background and objectives Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers’ approaches for handling these behaviors have implications for both care partners’ well-being. Yet the specific strategies that caregivers use in their daily management of behavioral and psychological symptoms of dementia are relatively unknown. This study used in-depth focus group data to examine family caregivers’ strategies for managing behavioral and psychological symptoms of dementia. Design As part of a larger study (NINR R01NR014200), four focus groups were conducted with a total of 26 family caregivers of older adults with dementia. Caregivers were asked to describe the strategies they use to manage behavioral and psychological symptoms of dementia. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major categories. Results Caregivers managed behavioral and psychological symptoms of dementia through (1) modifying interactions within the care dyad (e.g., simplifying communication); (2) modifying the care environment (e.g., using written prompts); (3) activity engagement; (4) humor; (5) self-care; and (6) social support. Conclusion Family caregivers manage behavioral and psychological symptoms of dementia using strategies to minimize stress and address the needs of both care partners. Caregivers’ own accounts of these approaches reveal a window into their everyday management of difficult behaviors. The present findings generate key information for routine clinical care and targeted interventions to promote caregiver well-being.

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