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  Supporting Informal Care and Caregivers

  Jul 29, 2020

  Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

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  • Alhassan Yosri Ibrahim Hassan  

  Abstract:

  Background: Information and communication technology (ICT)–based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions. Objective: The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges. Methods: A scoping review methodology was used following the Arksey and O’Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions. Results: The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers. Conclusions: Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders—including policy makers, health care professionals, informal caregivers, and care recipients—about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered.

  • JMIR Aging 2020;3(2):e20310

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  Big Data Analytics for Elder Care

  Jul 28, 2020

  Inferring Destinations and Activity Types of Older Adults From GPS Data: Algorithm Development and Validation

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  Authors List:

  • Sayeh Bayat  
  • Gary Naglie  
  • Mark J Rapoport  
  • Elaine Stasiulis  
  • Belkacem Chikhaoui  
  • Alex Mihailidis  

  Abstract:

  Background: Outdoor mobility is an important aspect of older adults’ functional status. GPS has been used to create indicators reflecting the spatiotemporal dimensions of outdoor mobility for applications in health and aging. However, outdoor mobility is a multidimensional construct. There is, as of yet, no classification algorithm that groups and characterizes older adults’ outdoor mobility based on its semantic aspects (ie, mobility intentions and motivations) by integrating geographic and domain knowledge. Objective: This study assesses the feasibility of using GPS to determine semantic dimensions of older adults’ outdoor mobility, including destinations and activity types. Methods: A total of 5 healthy individuals, aged 65 years or older, carried a GPS device when traveling outside their homes for 4 weeks. The participants were also given a travel diary to record details of all excursions from their homes, including date, time, and destination information. We first designed and implemented an algorithm to extract destinations and infer activity types (eg, food, shopping, and sport) from the GPS data. We then evaluated the performance of the GPS-derived destination and activity information against the traditional diary method. Results: Our results detected the stop locations of older adults from their GPS data with an F1 score of 87%. On average, the extracted home locations were within a 40.18-meter (SD 1.18) distance of the actual home locations. For the activity-inference algorithm, our results reached an F1 score of 86% for all participants, suggesting a reasonable accuracy against the travel diary recordings. Our results also suggest that the activity inference’s accuracy measure differed by neighborhood characteristics (ie, Walk Score). Conclusions: We conclude that GPS technology is accurate for determining semantic dimensions of outdoor mobility. However, further improvements may be needed to develop a robust application of this system that can be adopted in clinical practice.

  • JMIR Aging 2020;3(2):e18008

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  Supporting Informal Care and Caregivers

  Jul 23, 2020

  A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study

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  Authors List:

  • Estefania Guisado-Fernandez  
  • Catherine Blake  
  • Laura Mackey  
  • Paula Alexandra Silva  
  • Dermot Power  
  • Diarmuid O'Shea  
  • Brian Caulfield  

  Abstract:

  Background: Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person’s memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being. Objective: This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD–informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations. Methods: The PwD–informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD–informal caregivers, using international and standardized validated questionnaires. Participants’ demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant. Results: There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform. Conclusions: The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD–informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population.

  • JMIR Aging 2020;3(2):e15600

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  Information and Patient Education on...

  Jul 10, 2020

  Video Narratives Intervention Among Stroke Survivors: Feasibility and Acceptability Study of a Randomized Controlled Trial

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  Authors List:

  • Jamuna Rani Appalasamy  
  • Joyce Pauline Joseph  
  • Siva Seeta Ramaiah  
  • Anuar Zaini Md Zain  
  • Kia Fatt Quek  
  • Kyi Kyi Tha  

  Abstract:

  Background: A large number of stroke survivors worldwide suffer from moderate to severe disability. In Malaysia, long-term uncontrolled stroke risk factors lead to unforeseen rates of recurrent stroke and a growing incidence of stroke occurrence across ages, predominantly among the elderly population. This situation has motivated research efforts focused on tapping into patient education, especially related to patient self-efficacy of understanding and taking medication appropriately. Video narratives integrated with health belief model constructs have demonstrated potential impacts as an aide to patient education efforts. Objective: The aim of this study was to investigate the feasibility and acceptability of study procedures based on a randomized controlled trial protocol of a video narratives intervention among poststroke patients. We also aimed to obtain preliminary findings of video narratives related to medication understanding and use self-efficacy (MUSE) and blood pressure control. Methods: A parallel group randomized controlled trial including a control group (without video viewing) and an intervention group (with video viewing) was conducted by researchers at a neurology outpatient clinic on poststroke patients (N=54). Baseline data included patients’ sociodemographic characteristics, medical information, and all outcome measures. Measurements of MUSE and blood pressure following the trial were taken during a 3-month follow-up period. Feasibility of the trial was assessed based on recruitment and study completion rates along with patients’ feedback on the burden of the study procedures and outcome measures. Acceptability of the trial was analyzed qualitatively. Statistical analysis was applied to ascertain the preliminary results of video narratives. Results: The recruitment rate was 60 out of 117 patients (51.3%). Nevertheless, the dropout rate of 10% was within the acceptable range. Patients were aged between 21 and 74 years. Nearly 50 of the patients (>85%) had adequate health literacy and exposure to stroke education. Most of the patients (>80%) were diagnosed with ischemic stroke, whereby the majority had primary hypertension. The technicalities of randomization and patient approach were carried out with minimal challenge and adequate patient satisfaction. The video contents received good responses with respect to comprehension and simplicity. Moreover, an in-depth phone interview with 8 patients indicated that the video narratives were considered to be useful and inspiring. These findings paralleled the preliminary findings of significant improvement within groups in MUSE (P=.001) and systolic blood pressure control (P=.04). Conclusions: The queries and feedback from each phase in this study have been acknowledged and will be taken forward in the full trial. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN 12618000174280; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373554

  • JMIR Aging 2020;3(2):e17182

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  Usability and Technology Use Studies...

  Jun 26, 2020

  The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods...

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  Authors List:

  • Colleen M Peterson  
  • Jude P Mikal  
  • Hayley R McCarron  
  • Jessica M Finlay  
  • Lauren L Mitchell  
  • Joseph E Gaugler  

  Abstract:

  Background: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver’s burden by simplifying ADRD health care management Objective: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach. Methods: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants’ characteristics as well as PHR-ADRD use and experiences based on overall favorability status. Results: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants. Conclusions: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system.

  • JMIR Aging 2020;3(1):e17769

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  Supporting Informal Care and Caregivers

  Jun 25, 2020

  Developing a Plan for the Sustainable Implementation of an Electronic Health Intervention (Partner in Balance) to Support Caregivers of People With Dementia:...

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  Authors List:

  • Hannah Liane Christie  
  • Lizzy Mitzy Maria Boots  
  • Kirsten Peetoom  
  • Huibert Johannes Tange  
  • Frans Rochus Josef Verhey  
  • Marjolein Elizabeth de Vugt  

  Abstract:

  Background: Given the increasing use of digital interventions in health care, understanding how best to implement them is crucial. However, evidence on how to implement new academically developed interventions in complex health care environments is lacking. This case study offers an example of how to develop a theory-based implementation plan for Partner in Balance, an electronic health (eHealth) intervention to support the caregivers of people with dementia. Objective: The specific objectives of this study were to (1) formulate evidence-based implementation strategies, (2) develop a sustainable business model, and (3) integrate these elements into an implementation plan. Methods: This case study concerns Partner in Balance, a blended care intervention to support the caregivers of people with dementia, which is effective in improving caregiver self-efficacy, quality of life, and experienced control. The large-scale implementation of Partner in Balance took place in local dementia case-management services, local care homes, dementia support groups, and municipalities. Experiences from real-life pilots (n=22) and qualitative interviews with national stakeholders (n=14) were used to establish an implementation plan consisting of implementation strategies and a business model. Results: The main finding was the need for a business model to facilitate decision-making from potential client organizations, who need reliable pricing information before they can commit to training coaches and implementing the intervention. Additionally, knowledge of the organizational context and a wider health care system are essential to ensure that the intervention meets the needs of its target users. Based on these findings, the research team formulated implementation strategies targeted at the engagement of organizations and staff, dissemination of the intervention, and facilitation of long-term project management in the future. Conclusions: This study offers a theory-based example of implementing an evidence-based eHealth intervention in dementia health care. The findings help fill the knowledge gap on the eHealth implementation context for evidence-based eHealth interventions after the trial phase, and they can be used to inform individuals working to develop and sustainably implement eHealth.

  • JMIR Aging 2020;3(1):e18624

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  Medical Devices for the Elderly

  Jun 18, 2020

  Clinician Perspectives on the Design and Application of Wearable Cardiac Technologies for Older Adults: Qualitative Study

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  Authors List:

  • Caleb Ferguson  
  • Sally C Inglis  
  • Paul P Breen  
  • Gaetano D Gargiulo  
  • Victoria Byiers  
  • Peter S Macdonald  
  • Louise D Hickman  

  Abstract:

  Background: New wearable devices (for example, AliveCor or Zio patch) offer promise in detecting arrhythmia and monitoring cardiac health status, among other clinically useful parameters in older adults. However, the clinical utility and usability from the perspectives of clinicians is largely unexplored. Objective: This study aimed to explore clinician perspectives on the use of wearable cardiac monitoring technology for older adults. Methods: A descriptive qualitative study was conducted using semistructured focus group interviews. Clinicians were recruited through purposive sampling of physicians, nurses, and allied health staff working in 3 tertiary-level hospitals. Verbatim transcripts were analyzed using thematic content analysis to identify themes. Results: Clinicians representing physicians, nurses, and allied health staff working in 3 tertiary-level hospitals completed 4 focus group interviews between May 2019 and July 2019. There were 50 participants (28 men and 22 women), including cardiologists, geriatricians, nurses, and allied health staff. The focus groups generated the following 3 overarching, interrelated themes: (1) the current state of play, understanding the perceived challenges of patient cardiac monitoring in hospitals, (2) priorities in cardiac monitoring, what parameters new technologies should measure, and (3) cardiac monitoring of the future, “the ideal device.” Conclusions: There remain pitfalls related to the design of wearable cardiac technology for older adults that present clinical challenges. These pitfalls and challenges likely negatively impact the uptake of wearable cardiac monitoring in routine clinical care. Partnering with clinicians and patients in the co-design of new wearable cardiac monitoring technologies is critical to optimize the use of these devices and their uptake in clinical care.

  • JMIR Aging 2020;3(1):e17299

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  Social Media in Aging

  Jun 16, 2020

  Digital Media as a Proponent for Healthy Aging in the Older Chinese American Population: Longitudinal Analysis

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  Authors List:

  • Sara Shu  
  • Benjamin K P Woo  

  Abstract:

  Background: Ensuring health literacy among underserved populations is essential amid an aging population. Accessible and appropriate (both culturally and linguistically) information is important when considering digital media education for older Chinese Americans. Objective: This study aims to investigate how social media fare over time in disseminating health information and how we may most effectively educate this population. Methods: For this study, 5 geriatric-themed educational videos about Parkinson disease, fall prevention, gastrointestinal health, oral health, and pulmonary disease were uploaded to YouTube. Data were collected over a 40-month period. Descriptive statistics and chi-square analysis were used to compare results from the first and second 20-month periods. Results: In 40 months, the 5 videos in aggregate accrued 1171.1 hours of watch time, 7299 views, and an average view duration of 9.6 minutes. Comparing the first and second 20-month periods, there was a significant increase in mobile device usage, from 79.4% (3541/4458) to 83.3% (2367/2841). There was no significant difference in the usage of various external traffic sources and methods of sharing, with WhatsApp accounting for the majority of sharing in both 20-month periods. Conclusions: Our study provides insight into where to focus future strategies to optimize digital media content, and how to best recruit, direct, and disseminate health education to an older adult Chinese American population. Combining the success of YouTube, social media, and messaging platforms such as WhatsApp can help to transcend cultural and linguistic barriers to promote healthy aging.

  • JMIR Aging 2020;3(1):e20321

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  Internet Access and Digital...

  Jun 3, 2020

  The Use of Internet-Based Health and Care Services by Elderly People in Europe and the Importance of the Country Context: Multilevel Study

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  Authors List:

  • Sebastian Merkel  
  • Moritz Hess  

  Abstract:

  Background: Digital health care is becoming increasingly important, but it has the risk of further increasing the digital divide, as not all individuals have the opportunity, skills, and knowledge to fully benefit from potential advantages. In particular, elderly people have less experience with the internet, and hence, they are in danger of being excluded. Knowledge on the influences of the adoption of internet-based health and care services by elderly people will help to develop and promote strategies for decreasing the digital divide. Objective: This study examined if and how elderly people are using digital services to access health and social care. Moreover, it examined what personal characteristics are associated with using these services and if there are country differences. Methods: Data for this study were obtained from the Special Eurobarometer 460 (SB 460), which collected data on Europeans’ handling of and attitudes toward digital technologies, robots, and artificial intelligence, including data on the use of internet-based health and social care services, among 27,901 EU citizens aged 15 years or older. Multilevel logistic regression models were adopted to analyze the association of using the internet for health and social care services with several individual and country-level variables. Results: At the individual level, young age, high education, high social class, and living in an urban area were positively associated with a high probability of using internet-based health and social services. At the country level, the proportion of elderly people who participated in any training activity within the last month was positively associated with the proportion of elderly people using these services. Conclusions: The probability of using internet-based health and social services and their accompanying advantages strongly depend on the socioeconomic background. Training and educational programs might be helpful to mitigate these differences.

  • JMIR Aging 2020;3(1):e15491

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  Guest Editorial

  May 26, 2020

  Mitigating the Effects of a Pandemic: Facilitating Improved Nursing Home Care Delivery Through Technology

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  Authors List:

  • Linda S Edelman  
  • Eleanor S McConnell  
  • Susan M Kennerly  
  • Jenny Alderden  
  • Susan D Horn  
  • Tracey L Yap  

  Abstract:

  The coronavirus disease (COVID-19) pandemic has been particularly challenging for nursing home staff and residents. Centers for Medicare & Medicaid Services regulation waivers are burdening staff and affecting how care is delivered. Residents are experiencing social isolation, which can result in physical and behavioral health issues, particularly for persons with dementia. These challenges can be addressed in part through technology adaptations. Full integration of electronic health record systems can improve workflow and care quality. Telehealth can improve access to outside providers, provide remote monitoring, and improve social connectedness. Electronic and audiovisual programs can be used for end-of-life planning and information sharing between nursing home staff and families. Online learning systems and other online resources provide flexible options for staff education and training. Investing in and adapting technology can help mitigate workforce stress and improve the quality of nursing home care during and after the COVID-19 crisis.

  • JMIR Aging 2020;3(1):e20110

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  Supporting Informal Care and Caregivers

  May 19, 2020

  How Caregivers of People With Dementia Search for Dementia-Specific Information on the Internet: Survey Study

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  Authors List:

  • Areti Efthymiou  
  • Evridiki Papastavrou  
  • Nicos Middleton  
  • Artemis Markatou  
  • Paraskevi Sakka  

  Abstract:

  Background: During the last decade, more research has focused on web-based interventions delivered to support caregivers of people with dementia. However, little information is available in relation to internet use among caregivers in general, especially those caring for people with dementia. Objective: The aim of this study was to evaluate the dementia-related internet use and factors that may be associated with its use among caregivers of people with dementia in Greece. Methods: Secondary data from the Greek Dementia Survey of the Athens Association of Alzheimer’s Disease and Related Disorders were collected from April to June 2017. A total of 580 caregivers of people with dementia participated in the study. Results: The majority of the caregivers reported that they had used the internet in the previous 3 months (84.1%, 488/580). Nearly half of the caregivers (47.5%, 276/580) reported that they had received dementia services online. Bivariate analysis showed that a dementia-specific search of information was associated with age, education, kinship, and years of care. Age (odds ratio [OR] 2.362, 95% CI 1.05-5.33) and education (OR 2.228, 95% CI 1.01-4.94) were confirmed as predictors, with younger caregivers and those with higher educational attainment being more likely to search for dementia-specific information. Use of the internet to search for dementia information was only related to hours of care. The internet use by caregivers within the previous 3 months was associated with variables such as age, education, occupation, kinship, years of care, and self-reported impact on physical and social health. Conclusions: Caregivers of people with dementia in Greece, as in the other southern European countries, are essential agents of the national health system. The existing short- and long-term respite care services are limited or nonexistent. Currently, caregivers receive mostly support and education from memory clinics and municipality consultation centers, which are mainly based in central cities in Greece. Despite the dementia awareness movement in Greece, there is still space to integrate the role of technology in the support and education of caregivers. Development of training programs for enhancing electronic health literacy skills as well as web-based services provision could support Greek caregivers in their everyday caring tasks.

  • JMIR Aging 2020;3(1):e15480

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  Supporting Informal Care and Caregivers

  May 13, 2020

  Perspectives From Municipality Officials on the Adoption, Dissemination, and Implementation of Electronic Health Interventions to Support Caregivers of...

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  Authors List:

  • Hannah Liane Christie  
  • Mignon Chloë Philomela Schichel  
  • Huibert Johannes Tange  
  • Marja Yvonne Veenstra  
  • Frans Rochus Josef Verhey  
  • Marjolein Elizabeth de Vugt  

  Abstract:

  Background: Very few evidence-based electronic health (eHealth) interventions for caregivers of people with dementia are implemented into practice. As part of a cross-border collaboration focusing on dementia and depression in older people, two eHealth interventions for caregivers of people with dementia (“Myinlife” and “Partner in Balance”) were adopted by nine municipalities in the Euregion Meuse-Rhine. Objective: This study aimed to (1) identify determinants for the implementation of eHealth interventions for caregivers of people with dementia in a municipality context and (2) formulate implementation strategies for these interventions. Methods: Eight municipality officials were interviewed using open-ended, semistructured interviews about their background, thoughts on the implementation of the intervention, recommended strategies, and thoughts on eHealth in general. One additional municipality discontinued the implementation project and submitted answers to the interview questions via email. The interviews were transcribed and independently analyzed using inductive thematic analysis. Results: The interviews provided information on the perspectives of municipality officials on implementing eHealth for caregivers of people with dementia in their local communities. Key findings from the inductive thematic analysis included the importance of face-to-face interviews in developing tailor-made implementation plans, the need for regular meetings, the enthusiasm of municipality officials to implement these interventions, the need for long-term sustainability planning through collecting data on the required resources and benefits, and the effect of name brand recognition in adoption. Conclusions: The findings contribute toward filling the previously identified gap in the literature on the implementation context of eHealth interventions for caregivers of people with dementia. Municipality officials’ views indicated which implementation determinants they expected would influence the adoption, dissemination, and future implementation of eHealth interventions for caregivers of people with dementia in a municipal context. These insights were applied to tailored implementation strategies to facilitate the future implementation of interventions such as Myinlife and Partner in Balance.

  • JMIR Aging 2020;3(1):e17255

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