scholarly journals Voices of Caregivers: Key Demands Towards AI-driven Home Monitoring in Community-based Dementia Care

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 664-664
Author(s):  
Christian Wrede ◽  
Annemarie Braakman-Jansen ◽  
Lisette van Gemert-Pijnen
Keyword(s):  
Ethical Issues ◽  
Qualitative Content Analysis ◽  
Home Monitoring ◽  
Dementia Care ◽  
Community Dwelling ◽  
Care Recipient ◽  
Informational Privacy ◽  
People With Dementia ◽  
Home Based ◽  
Monitoring Technologies

Abstract While most people with dementia prefer to live at home for as long as possible, this also puts more pressure on both their informal and formal care network. To provide support in home-based dementia care, there is growing interest in technology that allows caregivers to remotely monitor health and safety of people with dementia. Novel generations of these technologies are using non-wearable, pervasive sensors coupled with algorithms to continuously collect and model meaningful in-home information. However, while these self-learning monitoring systems develop rapidly, their target users’ views and demands are still insufficiently mapped out. To identify possible barriers to acceptance and ways to overcome these, we conducted a scenario-based study, including semi-structured interviews with informal caregivers (n=19) and focus groups with home care professionals (n=16) of community-dwelling people with dementia. Inductive qualitative content analysis revealed that both groups of caregivers were concerned about the informational privacy of their care recipient with dementia, information overload, and ethical issues related to dehumanizing care. Identified demands mainly centered around how to overcome these barriers. We identified several demands related to specific functionalities, user experience factors, services surrounding the technology, and integration into the existing work context. Most notably, caregivers highlighted the importance of introducing AI-driven in-home monitoring technologies in a way it prevents them from feeling undervalued. In conclusion, our findings can help to inform the development of more acceptable and unobtrusive in-home monitoring technologies to support home-based dementia care.

scholarly journals Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: A Qualitative Study among Formal and Informal Caregivers (Preprint)

2020 ◽  
Author(s):  
Christian Wrede ◽  
Annemarie Braakman-Jansen ◽  
Lisette van Gemert-Pijnen
Keyword(s):  
Focus Groups ◽  
Independent Living ◽  
Informal Caregivers ◽  
Home Monitoring ◽  
Dementia Care ◽  
Community Dwelling ◽  
Formal Caregivers ◽  
Home Based ◽  
Expected Benefits ◽  
Monitoring Technologies

BACKGROUND Due to a growing shortage in residential care, people with dementia (PwD) will increasingly be encouraged to live at home for longer. While extended independent living is preferred by PwD, it also puts more pressure on both the informal and formal care network. To support (in)formal caregivers of PwD, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor lifestyle, health and safety of PwD. These solutions will, despite their potential, only be viable if they meet the expectations and needs of formal and informal caregivers of PwD. OBJECTIVE The objective of this study was to explore expected benefits, barriers, needs and requirements towards unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling PwD. METHODS A combination of semi-structured interviews and focus groups was used to collect data among informal (N=19) and formal (N=16) caregivers of PwD. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn. RESULTS Results showed that formal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should especially be used to monitor (the risk of) falls, day- and night rhythm, personal hygiene, nocturnal restlessness and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking selfcare information, extended independent living, objective communication, prevention and pro-active measures, emotional reassurance and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. At the same time, main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed and how the technology should be integrated into the existing work context. CONCLUSIONS Despite the presence of barriers, formal and informal caregivers of PwD generally saw value in unobtrusive in-home monitoring and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are taken into account. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

scholarly journals Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: Qualitative Study Among Formal and Informal Caregivers

JMIR Aging ◽  
10.2196/26875 ◽  
2021 ◽  
Vol 4 (2) ◽  
pp. e26875
Author(s):  
Christian Wrede ◽  
Annemarie Braakman-Jansen ◽  
Lisette van Gemert-Pijnen
Keyword(s):  
Focus Groups ◽  
Independent Living ◽  
Informal Caregivers ◽  
Home Monitoring ◽  
Dementia Care ◽  
Formal Caregivers ◽  
People With Dementia ◽  
Home Based ◽  
Expected Benefits ◽  
Monitoring Technologies

Background Due to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia. Objective The objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia. Methods A combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn. Results Formal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context. Conclusions Despite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

scholarly journals The Effect of Long Term Care Resources on Burdens for Caregiving People Living with Dementia in Taiwan

2021 ◽  
Author(s):  
Yang-Hao Ou ◽  
Ming-Che Chang ◽  
Wen-Fu Wang ◽  
Kai-Ming Jhang
Keyword(s):  
Caregiver Burden ◽  
Long Term Care ◽  
Dementia Care ◽  
Care Team ◽  
Control Group ◽  
Term Care ◽  
People With Dementia ◽  
Home Based ◽  
Caregiver Group

Abstract Background: There is an increasing awareness of caregiver's burden, especially in those caring for people with dementia. The caregiver burden has been studied extensively in Western countries; however, the interpretation of the results and replication of the intervention may deem unfit in the Chinese culture. Therefore, this study identifies the change in caregiver burden by interventional methods under current Taiwan's long-term care Act 2.0.Method: A total of 2,598 newly diagnosed dementia outpatients was evaluated by the Changhua Christian Hospital dementia care team. Eighty patients utilize one of the three care resources, including community-based services (n = 33), home-based services (n = 19), or taking care by foreign caregivers (n = 28). Participants in the control group were selected by matching their global CDR score, gender, age, and caregivers' age with a 1:4 ratio. All caregivers completed the Zarit Burden Interview (ZBI) questionnaires before and six months after utilizing the care resources. Results: The home-based and the foreign caregiver groups have the highest baseline ZBI scores with 37.63±16.14 and 36.57±17.14, respectively. The second ZBI score was assessed about six months after the baseline showing that the home-based group remained the highest caregiver burden (ZBI = 31.74±12.23) and the foreign caregiver group showed the lowest burden (ZBI = 25.68±12.09). The mean difference in the ZBI score confirmed that the foreign caregiver group had the most improvement, averaging a decrease of 17.99±31.08 points (adjust observation time). A linear regression model showed that home-based care and foreign caregiver contributes the most reduction in caregiver burden (-11.83 and -19,07 ZBI scores, respectively).Conclusion: Caring for people with dementia includes caring for their caregivers. Dementia care team should provide proper social resources, which are crucial in the alleviation of caregiver burden.

Management of dementia

2020 ◽  
pp. 557-570
Author(s):  
Sarah Cullum ◽  
Tesema Taye
Keyword(s):  
Quality Of Life ◽  
Social Care ◽  
Ethical Issues ◽  
Family Members ◽  
Dementia Care ◽  
Psychosocial Aspects ◽  
People With Dementia

The cornerstone of dementia care is social care, and much of this is delivered by the families and carers of people with dementia. The management of dementia should therefore focus on supporting and developing the care provided by family members and carers in the community, because their education and enablement will help to optimize the quality of life for all people living with dementia. This chapter concentrates on the assessment and management of people with dementia in the early and later stages of the disorder. At both stages we consider engagement, autonomy, respect, protection, and ethical issues, as well as describing the clinical and psychosocial aspects of treatment. The emphasis is on the broader principles of management, which apply to people with dementia of any aetiology, their families, carers, and communities, and take into account the different settings in which they may present.

Participation of end users in the design of assistive technology for people with mild to severe cognitive problems; the European Rosetta project

2014 ◽  
Vol 26 (5) ◽  
pp. 769-779 ◽  
Author(s):  
F. J. M. Meiland ◽  
B. J. J. Hattink ◽  
T. Overmars-Marx ◽  
M. E. de Boer ◽  
A. Jedlitschka ◽  
...  
Keyword(s):  
Participatory Design ◽  
Ethical Issues ◽  
End Users ◽  
Community Dwelling ◽  
Modular System ◽  
Individual Interviews ◽  
Emergency Situations ◽  
People With Dementia ◽  
Expert Meeting ◽  
Informal Carers

ABSTRACTBackground:In the European Rosetta project three separate, previously developed, ICT systems were improved and integrated to create one modular system that helps community-dwelling people with mild cognitive impairment and dementia in different stages of the disease. The system aims to support them in daily functioning, monitor (deviations from) patterns in daily behaviour and to automatically detect emergency situations. The study aimed to inventory the end users’ needs and wishes regarding the development and design of the new integrated Rosetta system, and to describe the to be developed Rosetta system.Methods:Qualitative user-participatory design with in total 50 persons: 14 people with dementia, 13 informal carers, 6 professional carers, 9 dementia experts, 7 care partners within the project, and 1 volunteer. In the Netherlands user focus group sessions were performed and in Germany individual interviews. Dementia experts were consulted by means of a questionnaire, an expert meeting session, and interviews.Results:Persons with dementia and informal carers appreciated the following functionalities most: help in cases of emergencies, navigation support and the calendar function. Dementia experts rated various behaviours relevant to monitor in order to detect timely changes in functioning, e.g. eating, drinking, going to the toilet, taking medicine adequately, performance of activities and sleep patterns. No ethical issues regarding the use of sensors and cameras were mentioned.Conclusion:The user participatory design resulted in valuable input from persons with dementia, informal carers and professional carers/dementia experts, based on which a first prototype Rosetta system was built.

Influence of leadership on implementing Dementia Care Mapping: A multiple case study

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 1976-1993 ◽  
Author(s):  
Tina Quasdorf ◽  
Sabine Bartholomeyczik
Keyword(s):  
Nursing Homes ◽  
Leadership Style ◽  
Qualitative Content Analysis ◽  
Dementia Care ◽  
Primary Study ◽  
Successful Implementation ◽  
People With Dementia ◽  
Care Mapping ◽  
Dementia Care Mapping

Dementia Care Mapping is an internationally applied method for enhancing person-centred care for people with dementia in nursing homes. Recent studies indicate that leadership is crucial for the successful implementation of Dementia Care Mapping; however, research on this topic is rare. This case study aimed to explore the influence of leadership on Dementia Care Mapping implementation in four nursing homes. Twenty-eight interviews with project coordinators, head nurses and staff nurses were analysed using qualitative content analysis. Nursing homes that failed to implement Dementia Care Mapping were characterised by a lack of leadership. The leaders of successful nursing homes promoted person-centred care and were actively involved in implementation. While overall leadership performance was positive in one of the successful nursing homes, conflicts related to leadership style occurred in the other successful nursing homes. Thus, it is important that leaders promote person-centred care in general and Dementia Care Mapping in particular. Furthermore, different types of leadership can promote successful implementation. Trial registration of the primary study: Current Controlled Trials ISRCTN43916381.

“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

2017 ◽  
Vol 29 (5) ◽  
pp. 765-776 ◽  
Author(s):  
Ashley Macleod ◽  
Gemma Tatangelo ◽  
Marita McCabe ◽  
Emily You
Keyword(s):  
Family Caregivers ◽  
Service Use ◽  
Care Service ◽  
Aged Care ◽  
Community Dwelling ◽  
Barriers And Facilitators ◽  
Care Recipient ◽  
Structured Interviews ◽  
Good Communication ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

scholarly journals Home Care Resiliency during the COVID-19 Pandemic: Older Adult-Home Care Aide Dyads’ Perspectives

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 721-721
Author(s):  
Naoko Muramatsu ◽  
Lijuan Yin ◽  
Maria Caceres ◽  
Jordan Skowronski
Keyword(s):  
Older Adults ◽  
Home Care ◽  
Healthcare Providers ◽  
Community Dwelling ◽  
Care Recipient ◽  
Work Related ◽  
Care Recipients ◽  
Acute And Chronic Stress ◽  
Home Based ◽  
Related Stress

Abstract Homecare has increased its value as an alternative to nursing homes and adapted to evolving COVID-19 challenges. However, little is known about how COVID-19 has impacted community-dwelling older adults who need assistance with daily activities, including dressing, cooking, and shopping. Guided by the stress process framework, this mixed-method study examined how older homecare recipients experienced the acute and chronic stress during the first eight months of the pandemic, focusing on the role of home care aides (HCAs) in the context of Medicaid-funded in-home services. Thirty-five dyads of care recipients and HCAs participated in a COVID telephone survey as part of a larger study. Care recipients were typically older minority (40% African American, 31% Latinx) women (77%). Their COVID-related anxiety level, assessed by a 6-item Spielberger State Anxiety Inventory (1 “not at all” to 4 “very much”), was 2.2 (SD=0.9). While COVID-19 drastically reduced contacts with family members and healthcare providers, HCAs continued to provide care in person. One care recipient said, “Fortunately, I still have my HCA come and that keeps me sane.” HCAs showed resilience while facing their own family- and work-related stress: “I have followed the rules and just adapted. (COVID) did not affect the activities for my client.” Some dyads, however, experienced care disruptions because of COVID infection or fear in one or both parties. COVID-19 has demonstrated homecare resilience at the person-, dyad-, and organization-levels, calling for equitable, sustainable home-based care for a growing number of older adults who desire to stay in the home.

Assistive technology and people with dementia

2003 ◽  
Vol 13 (4) ◽  
pp. 313-319 ◽  
Author(s):  
Marilyn Cash
Keyword(s):  
Assistive Technology ◽  
Ethical Issues ◽  
Dementia Care ◽  
Use Of Technology ◽  
People With Dementia ◽  
The Way

The use of the term ‘technology’ in relation to dementia care provokes conflicting reactions. For some, ‘technology is a saviour, the way to paradise; others are deeply suspicious of technology and scrutinize its proponents carefully for any tell-tale marks of the Beast’. These conflicting reactions may be attributed to the confusion surrounding the term ‘technology’, the lack of awareness at all levels of the potential of technology to assist people with dementia, and the ethical issues surrounding the use of technology.

scholarly journals Who Cares for Whom and Is That important? A Typology of Dementia Care Dyads and Health-Related Support Measures

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 757-758
Author(s):  
Karin Wolf-Ostermann ◽  
Henrik Wiegelmann ◽  
Liane Schirra-Weirich ◽  
Lisa-Marie Verhaert ◽  
Werner Brannath ◽  
...  
Keyword(s):  
Latent Class ◽  
Decisive Role ◽  
Dementia Care ◽  
Community Dwelling ◽  
Living Situation ◽  
Disease Characteristics ◽  
Home Based ◽  
Care And Support ◽  
Health Related ◽  
Person With Dementia

Abstract In Germany, about 70% of all care-dependent persons are community dwelling. In dementia care arrangements you will commonly find a primary informal caregiver (IC) taking on the decisive role in providing care and support for the person with dementia (PwD). This study aimed to develop a typology of dyads based on typical characteristics of the PwD, the IC and their relationship and to gain a better understanding of home-based dementia care arrangements. A latent class analysis was used to detect different dyad types based on personal, social, care and disease characteristics of 551 dyads of CGs and PwD living at home. A 6-class model was identified. The classes could be differentiated based on IC-PwD key characteristics (gender, age, relationship, living situation, occupation). There are significant differences with regard to observed outcomes. The verification of different types of dyads strengthens the need to develop tailored dyad-centred interventions in dementia care

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