DEMENTIA CAREGIVER EMBRACE OF HOME VIDEO TELEHEALTH VISITS

Abstract Bringing people with dementia to in-person medical visits can be logistically challenging for family caregivers, especially when they themselves are older adults with their own health or mobility challenges, when they live far from the clinic, or when they have to combat inclement weather. Our dementia management clinic has successfully trialed video visits into the home. Video sessions have been welcomed by many dementia caregivers citing reduced travel and less disruption of daily routine as the primary benefits of participating. Caregivers report equivalent visit satisfaction compared to in-person visits. While technical issues have been common, most were just brief audio or video lags. Expansion of HIPAA compliant telemedicine software options across devices is increasing the population of caregivers who are able to participate in home video visits. (127 words)

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Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

10.31231/osf.io/cgpfs ◽

2018 ◽

Author(s):

Abu Sikder ◽

Francis Yang ◽

Rhiana Schafer ◽

Glenna A. Dowling ◽

Lara Traeger ◽

...

Keyword(s):

Family Caregivers ◽

Mobile Application ◽

Self Regulation ◽

Pilot Trial ◽

Depression Symptom ◽

Structured Interviews ◽

Physical Strain ◽

Dementia Caregivers ◽

Loved One ◽

People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

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Impact of Social Isolation on People with Dementia and Their Family Caregivers

Journal of Alzheimer s Disease ◽

10.3233/jad-201580 ◽

2021 ◽

pp. 1-11

Author(s):

Lílian Viana dos Santos Azevedo ◽

Ismael Luis Calandri ◽

Andrea Slachevsky ◽

Héctor Gastón Graviotto ◽

Maria Carolina Santos Vieira ◽

...

Keyword(s):

Family Caregivers ◽

Social Isolation ◽

Clinical Symptoms ◽

Memory Function ◽

South American ◽

Severe Dementia ◽

Dementia Caregivers ◽

People With Dementia ◽

Moderate Dementia ◽

Severity Of Dementia

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries.

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Impact of iN2L Tablets on Loneliness and Well-Being: Findings of an Innovative Industry-AAA Program

Innovation in Aging ◽

10.1093/geroni/igab046.3399 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 949-950

Author(s):

Lydia Nguyen ◽

Karen O'Hern ◽

Adam Siak ◽

Kristi Stoglin ◽

Charlotte Mather-Tayor

Keyword(s):

Older Adults ◽

Family Caregivers ◽

Social Isolation ◽

Well Being ◽

Case Managers ◽

Negative Consequences ◽

Negative Effects ◽

People With Dementia ◽

Innovative Program ◽

Adult Day Centers

Abstract Area Agency on Aging (AAA) senior and adult day centers closed due to COVID-19, causing many older adults to lose an important source of connection and engagement, leading to social isolation. To combat negative consequences, iN2L and a Florida AAA partnered on an innovative program providing iN2L tablets to AAA-supported older adults to use at home. The tablets have a simple interface, content specifically designed for older adults (e.g., games; music; movies), and video call capability. Participants included 51 independent older adults (mean age 77) and 39 family caregivers (mean age 59) of people with dementia. Participants completed phone surveys with AAA case managers at baseline and 3 months, including UCLA Loneliness Scale (3 item) and questions about their tablet experiences. Findings show positive trends for loneliness and well-being in both groups. At 3 months, lonely participants decreased from baseline by 25% for independent older adults and 18% for family caregivers. Over 80% of independent older adults agreed the tablet engages them in meaningful activities, provides daily enjoyment, and helps with relaxation. For family caregivers, 79% agreed the tablet is another tool in their caregiver toolkit and about 70% agreed the tablet adds daily enjoyment, helps with relaxation, and provides engagement in meaningful activities for their family member. Approximately 50% of caregivers felt happier, less stressed, and less irritable since using the tablets. This work has implications for the utility of technology in promoting engagement and connection, alleviating negative effects of social isolation, and the effectiveness of industry-AAA partnerships.

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

Innovation in Aging ◽

10.1093/geroni/igab046.007 ◽

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.

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Aspects of Grit Among Dementia Family Caregivers

Innovation in Aging ◽

10.1093/geroni/igab046.029 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 8-8

Author(s):

Jyoti Savla ◽

Karen Roberto ◽

Jennifer Margrett

Keyword(s):

Family Caregivers ◽

Well Being ◽

Future Research ◽

Spiritual Support ◽

Dementia Caregivers ◽

Dementia Caregiver ◽

Caregiving Roles ◽

Caregiver Role ◽

The Impact

Abstract Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.

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Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis (Preprint)

10.2196/preprints.19468 ◽

2020 ◽

Author(s):

Minmin Leng ◽

Yajie Zhao ◽

Hongmei Xiao ◽

Ce Li ◽

Zhiwen Wang

Keyword(s):

Family Caregivers ◽

Meta Analysis ◽

Dementia Caregivers ◽

Psychological Burden ◽

Care Recipients ◽

People With Dementia ◽

Potential Benefits ◽

Supportive Interventions ◽

Supportive Intervention

BACKGROUND Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. OBJECTIVE This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. METHODS An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes. RESULTS In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=–0.21; 95% CI –0.31 to –0.10; P<.001), perceived stress (SMD=–0.40; 95% CI –0.55 to –0.24; P<.001), anxiety (SMD=–0.33; 95% CI –0.51 to –0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. CONCLUSIONS Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. CLINICALTRIAL PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434

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Identifying Care-Related Needs of Family Caregivers of People With Dementia: Beyond the Stress Process Model

Innovation in Aging ◽

10.1093/geroni/igaa057.241 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 74-74

Author(s):

Sara Moss ◽

Lauren Gebhardt-Kram ◽

Holly Dabelko-Schoeny ◽

Jennifer Cheavens

Keyword(s):

Content Analysis ◽

Family Caregivers ◽

Process Model ◽

Psychological Needs ◽

Stress Process ◽

Stress Process Model ◽

Dementia Caregiver ◽

People With Dementia ◽

Widespread Agreement ◽

Caregiver Needs

Abstract The psychosocial stress process model (Pearlin et al., 1990) remains a dominant theoretical framework characterizing the transactions between factors affecting outcomes of informal caregivers of people with dementia (PWD). Despite widespread agreement that the model provides an important framework for understanding caregiver experiences and predicting caregiver outcomes, it is not sufficient to clarify the needs of caregivers. Needs are conceptualized as the skills and resources that could be used to ameliorate the negative impacts of caregiving and promote quality of life (Gitlin & Hodgson, 2015). Determining caregiver needs requires appreciation of the complex background, contextual, and stress-related variables described in the stress process model and requires empirically- and theoretically-driven understanding of the diverse resources, materials, and skills that individuals require for global health and functioning. In this study, we conducted a content analysis of existing measures of dementia caregiver needs (N = 54), content analysis of materials related to evidence-based dementia caregiver interventions and government reports and documents (N = 28), and semi-structured in-depth interviews with current caregivers of PWD (N = 12) to identify the personal and care-related needs of family caregivers of PWD. We propose a framework of five inter-related need categories (Health-related needs, environmental needs, psychological needs, social needs, and needs related to the care and functioning of the PWD) that transact with the factors described in the stress process model, ultimately influencing functioning. In the future, we plan to test this model empirically with a nationally representative sample of caregivers.

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Dementia Care Apps for People with Dementia and Informal Caregivers: A Systematic Review Protocol

Gerontology ◽

10.1159/000514838 ◽

2021 ◽

pp. 1-6

Author(s):

Bing Ye ◽

Tuck-Voon How ◽

Charlene H. Chu ◽

Alex Mihailidis

Keyword(s):

Systematic Review ◽

Older Adults ◽

Family Caregivers ◽

End Users ◽

Dementia Care ◽

Cochrane Central Register ◽

Health Providers ◽

Care Needs ◽

Privacy And Security ◽

People With Dementia

Dementia drastically impacts the quality of life (QOL) of both people living with dementia (PLwD) and their family caregivers. As dementia progresses and care needs escalate, the likelihood of institutionalization is increased, which is counter to the wishes of the majority of older adults and their family members. Dementia care apps can provide critical support and have the potential to improve the QOL of both PLwD and their family caregivers and reduce perceived caregivers’ burden. However, there is a lack of understanding of the needs of both PLwD and their family caregivers related to dementia care apps. There is also a gap in understanding the privacy concerns in relation to the apps among older adults with dementia and their caregivers. As such, the main aims of this systematic review are to understand the landscape of dementia mobile apps targeting PLwD and their caregivers with respect to the features of the apps, usability testing, and the privacy and security aspects of the app from the perspective of both app developers/researchers and the end users (PLwD and family caregivers who provide care of PLwD). Extensive databases, including ACM Digital Library, Cochrane Central Register of Controlled Trials, Compendex, Embase, Inspec, Ovid MEDLINE(R) Daily, Proquest Dissertations and These Global, PsycINFO, and Scopus, have been searched. All searches are from the inception of the databases. All peer-reviewed studies and articles written in the English language are included. Two reviewers will independently screen and select the studies with the involvement of a third reviewer for disagreements. Data will be abstracted using a custom data extraction form that is made based on the research questions. Critical Appraisal Skills Programme (CASP) checklists will be used to assess the study quality. As the first review of its kind, the findings from this review will provide valuable insights related to the needs of the dementia care apps for both PLwD and their family caregivers. The review will be relevant to health providers who are interested in using technologies to promote the independence of PLwD and reduce the stress experienced from caregivers of PLwD. The review will also serve as a guide to app developers and researchers to design usable and acceptable apps. In addition, the review will provide critical knowledge of the privacy and security features of the app to reveal the valid concerns from the end users and thus help with the uptake and adoption of the dementia care apps.

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Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

Journal of Medical Internet Research ◽

10.2196/19468 ◽

2020 ◽

Vol 22 (9) ◽

pp. e19468

Author(s):

Minmin Leng ◽

Yajie Zhao ◽

Hongmei Xiao ◽

Ce Li ◽

Zhiwen Wang

Keyword(s):

Family Caregivers ◽

Meta Analysis ◽

Dementia Caregivers ◽

Psychological Burden ◽

Care Recipients ◽

People With Dementia ◽

Potential Benefits ◽

Supportive Interventions ◽

Supportive Intervention

Background Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. Objective This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. Methods An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes. Results In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=–0.21; 95% CI –0.31 to –0.10; P<.001), perceived stress (SMD=–0.40; 95% CI –0.55 to –0.24; P<.001), anxiety (SMD=–0.33; 95% CI –0.51 to –0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. Conclusions Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. Trial Registration PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434

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Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

Innovation in Aging ◽

10.1093/geroni/igab046.587 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 154-155

Author(s):

Melissa Harris ◽

Marita Titler

Keyword(s):

Older Adults ◽

Family Caregivers ◽

Community Services ◽

Community Dwelling ◽

Care Recipient ◽

Future Research ◽

Service Access ◽

Psychological Responses ◽

People With Dementia ◽

The Impact

Abstract Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

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