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

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.

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

10.2196/preprints.26875 ◽

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.

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

Innovation in Aging ◽

10.1093/geroni/igab046.2489 ◽

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.

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Focus Groups to Inform Further Development of a Digital Therapeutic Platform for Home Care Agencies in Dementia Care (Preprint)

10.2196/preprints.32516 ◽

2021 ◽

Author(s):

Aaron M Gilson ◽

Michele C Gassman ◽

Debby Dodds ◽

Robin Lombardo ◽

James H Ford II ◽

...

Keyword(s):

Clinical Trial ◽

Home Care ◽

Focus Groups ◽

Informal Caregivers ◽

Dementia Care ◽

Formal Caregivers ◽

Care Services ◽

Further Development ◽

Care Agency ◽

Home Care Agency

BACKGROUND Persons living with dementia (PLWD) require increasing levels of care and the care model for PLWD has evolved. The Centers for Medicare & Medicaid Services is transitioning long-term care services from institutional care to home or community-based services, including reimbursement for non-clinical services. Although home care companies are positioned to handle this transition, they need innovative solutions to address the special challenges posed by caring for PLWD. To live at home longer, PLWD require support from formal caregivers (i.e., paid professionals), who often lack knowledge of PLWDs’ personal histories and have high turnover, and/or informal caregivers (e.g., family or friends), who may have difficulty coping with behavioral and psychological symptoms of dementia. The Generation Connect (GC) platform was developed to support PLWD and their formal and informal caregivers. In preliminary studies, the GC platform improved moods for PLWD and influenced caregiver satisfaction. To enhance platform effectiveness, Generation Connect received a National Institutes of Health Small Business Innovation Research (NIH SBIR) grant to improve clinical outcomes, reduce healthcare costs, and lower out-of-pocket costs for PLWD who receive care through home care agencies. OBJECTIVE To conduct stakeholder focus groups to develop a better understanding about existing processes, needs, barriers, and goals for the use of the GC platform by home care agencies and formal and informal caregivers. METHODS A series of focus groups were conducted with 1) home care agency corporate leadership, 2) home care agency franchise owners, 3) home care agency formal caregivers, and 4) informal caregivers of PLWD. The qualitative approach allowed for the unrestricted generation of ideas that would best inform the development of the GC platform developers to enable home care providers to differentiate their dementia care services, involve informal caregivers, improve formal caregiver well-being, and extend PLWD ability to age in place. Using the Technology-Enabled Caregiving in the Home framework, an inductive and iterative content analysis was utilized to identify thematic categories from the transcripts. RESULTS A total of 39 participants participated across the six stakeholder focus groups. Five overarching themes were identified: (1) Technology-Related; (2) Care Services; (3) Data, Documentation, Outcomes; (4) Cost, Finance, Resources; and (5) Resources for Caregivers. Within each theme, the most frequent sub-themes were identified. Exemplar stakeholder group statements were compiled to provide support for each of the identified themes. CONCLUSIONS Focus group results will inform further development of the GC platform to reduce the burden of caregiving for PLWD, evaluate changes in cognition, preserve functional independence, and promote engagement between PLWD and caregivers. The next step is to evaluate the effectiveness of the GC platform in a NIH SBIR Phase 2 clinical trial to assess its efficacy of evidence-based interventions and market viability. CLINICALTRIAL This Phase 1 study did not meet the criteria for an Applicable Clinical Trial and therefore it was not registered on clinicaltrials.gov.

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Involving people with dementia and their informal caregivers in the development process of assistive technology: Description and evaluation of a user-centered design (Preprint)

10.2196/preprints.18319 ◽

2020 ◽

Author(s):

Iris A.G.M. Geerts ◽

Liselore J.A.E Snaphaan ◽

Inge M.B. Bongers

Keyword(s):

Focus Groups ◽

Assistive Technology ◽

Field Study ◽

Development Process ◽

Technology Development ◽

Informal Caregivers ◽

Assistive Technologies ◽

User Centered Design ◽

People With Dementia ◽

User Centered

BACKGROUND Despite the potential value of assistive technology to support people with dementia (PWD) in everyday activities, use of these technologies is still limited. To ensure that assistive technologies better address the specific needs and daily context of PWD and their informal caregivers, it is particularly important to involve them in all different phases of assistive technology development. The literature rarely describes the involvement of PWD throughout the development process of assistive technologies, which makes it difficult to further reflect on and improve active involvement of PWD. OBJECTIVE This two-part study aimed to gather insights on the user-centered design (UCD) applied in the development process of the alpha prototype of the serious game PLAYTIME by describing the methods and procedures of the UCD as well as evaluating the UCD from the perspective of all involved stakeholders. METHODS The first three phases of the user-driven Living Lab of Innovate Dementia 2.0 were applied to directly involve PWD and their informal caregivers through qualitative research methods, including focus groups and a context-field study, in the development of the alpha prototype of PLAYTIME from exploration to design to testing. After the testing phase, a total number of 18 semi-structured interviews were conducted with PWD, their informal caregivers and the project members of PLAYTIME to evaluate the applied UCD from the perspective of all involved stakeholders. The interviews addressed five of the principles for successful UCD and the appropriateness of the different methods used in the focus groups and context-field study. RESULTS Results of the interviews focused, amongst others, on the level of involvement of PWD and their informal caregivers in the development process, the input provided by PWD and their informal caregivers, the value of early prototyping, continuous iterations of design solutions and in-context testing, the role of dementia care professionals in the multidisciplinary project team, and the appropriateness of open- and closed-ended questions for obtaining input from PWD and their informal caregivers. CONCLUSIONS The description and evaluation of the UCD applied in the development process of the alpha prototype of PLAYTIME resulted in several insights on the relevance of UCD for all involved stakeholders as well as how PWD can be involved in the subsequent phases of usable and meaningful assistive technology development.

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

10.21203/rs.3.rs-841921/v1 ◽

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.

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Personhood and Dementia Care: A Qualitative Evidence Synthesis of the Perspectives of People With Dementia

The Gerontologist ◽

10.1093/geront/gnz159 ◽

2019 ◽

Author(s):

Niamh Hennelly ◽

Adeline Cooney ◽

Catherine Houghton ◽

Eamon O’Shea

Keyword(s):

Evidence Synthesis ◽

Dementia Care ◽

Care Process ◽

Qualitative Evidence Synthesis ◽

Formal Caregivers ◽

Cart Analysis ◽

Qualitative Evidence ◽

People With Dementia ◽

Centered Care ◽

Design And Methods

Abstract Background and Objectives Personhood is considered the cornerstone of person-centered care for people with dementia. However, there is little research on personhood in dementia care from the perspective of the person with dementia themselves. This article presents a qualitative evidence synthesis of the experiences and perceptions of people with dementia on personhood in dementia care. Research Design and Methods A systematic search of nine databases was conducted. In addition to initial screening, CART analysis was used to determine the most relevant papers. Thematic synthesis was conducted on 20 papers. The CASP tool was used to examine the quality of the included papers. GRADE CERQual analysis examined confidence in the review findings. Results People with dementia experience many changes due to the disease and the experience of being cared for in different settings. Personhood is affirmed through personal interactions with family, friends, other care recipients, and formal caregivers, as well as through continued engagement in social and occupational roles. Discussion and Implications The review has important implications for practice, regulation, and policy. The person and their personhood should be protected rather than undermined, and relationships should be enhanced not diminished by the formal care process. The focus should be on creating and amplifying opportunities for people with dementia to affirm the self through interactions with others and engaging in occupational and social roles to ensure continuity of self.

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Intensive Interaction and discourses of personhood: A focus group study with dementia caregivers

Dementia ◽

10.1177/1471301218814389 ◽

2018 ◽

Vol 19 (6) ◽

pp. 2018-2037

Author(s):

Cheyann J Heap ◽

Emma Wolverson

Keyword(s):

Focus Groups ◽

Critical Discourse Analysis ◽

Residential Care ◽

Social Power ◽

Care Home ◽

Dementia Care ◽

Focus Group Study ◽

People With Dementia ◽

Medical Discourses ◽

Paid Caregivers

Introduction Societal discourses of dementia are medicalised and dehumanising. This leads to a social problem: the loss of personhood in dementia care. The communication technique Intensive Interaction, however, honours personhood. The current study aimed to explore how paid caregivers of people with dementia enact societal discourses of dementia, with and without the context of Intensive Interaction. This was to explore ways to address the loss of personhood in dementia care. Method Paid caregivers from two residential care homes attended an Intensive Interaction training day. Caregivers participated in focus groups before and after training. Transcripts of the focus groups were analysed with Critical Discourse Analysis, an approach which relates discourse to social power. Results Before Intensive Interaction training, carers accessed medical discourses of loss, non-communication and lack of personhood. ‘Being with’ people with dementia was framed as separate to paid work. After training, caregivers accessed discourses of communication and personhood. Intensive Interaction reframed ‘being with’ people with dementia as part of ‘doing work’. Family caregivers were largely absent from discourses. Care home hierarchies and the industrialisation of care were barriers towards honouring personhood. Conclusions Medical discourses of dementia reinforce a status quo whereby interpersonal interactions are devalued in dementia care, and professional ‘knowledge’ (thereby professional power) is privileged over relationships. Intensive Interaction may enable paid caregivers to access person-centred discourses and related practices. However, this requires support from management, organisational structures, and wider society. More research is needed to identify ways to involve families in residential care and to explore the effects of using Intensive Interaction in practice.

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Needs of informal caregivers during transition from home towards institutional care in dementia: a systematic review of qualitative studies

International Psychogeriatrics ◽

10.1017/s1041610214002154 ◽

2014 ◽

Vol 27 (6) ◽

pp. 891-902 ◽

Cited By ~ 33

Author(s):

Basema Afram ◽

Hilde Verbeek ◽

Michel H.C. Bleijlevens ◽

Jan P.H. Hamers

Keyword(s):

Nursing Home ◽

Transition Period ◽

Informal Caregivers ◽

Institutional Care ◽

Care Transition ◽

Term Care ◽

People With Dementia ◽

Home Based ◽

Need Support ◽

Home Based Care

ABSTRACTBackground:Alongside providing care, informal caregivers of people with dementia often need support and guidance themselves, especially during difficult periods such as the care-transition from home towards a nursing home. Knowledge on needs of informal caregivers during this period is sparse. This study aims to provide insight into problems and needs of informal caregivers caring for people with dementia during care-transition from home-based care to institutional long-term care.Methods:A systematic electronic search in CINAHL, Cochrane, Medline, PsycINFO, Pubmed and Web of Knowledge. All qualitative articles up to September 2013 were considered. The included articles underwent a quality appraisal. Thematic analysis was used to analyze problems and needs described in the articles.Results:Thirteen publications were included providing 14 topics comprising needs and problems of informal caregivers during the care-transition period. The most stated topics were: “emotional concerns” (e.g. grief and shame about the decision), “knowledge/information” (e.g. understanding the care system) and “support” (e.g. need for counseling). Similar topics were found prior and after admission, with examples specific to the either the home or nursing home situation.Conclusions:The care-transition period should be considered a continuum, as similar needs and problems were identified prior and after admission. This should be kept in mind in developing support and guidance for informal caregivers during this process. Whereas currently the situation prior and post admission are seen and treated as adjacent stages, they should be considered one integrated stage. Multicomponent programmes should be offered that are designed in a continuous way, starting prior to admission, and continuing after.

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Do interventions with staff in long-term residential facilities improve quality of care or quality of life for people with dementia? A systematic review of the evidence

International Psychogeriatrics ◽

10.1017/s1041610216001757 ◽

2016 ◽

Vol 28 (12) ◽

pp. 1935-1936 ◽

Cited By ~ 1

Author(s):

Nancy A. Hodgson

Keyword(s):

Patient Outcomes ◽

Dementia Care ◽

Dementia Patient ◽

Dyadic Relationship ◽

Quality Outcomes ◽

Formal Caregivers ◽

Institutional Settings ◽

People With Dementia

The review by Bird and colleagues (2016), published in this issue of International Psychogeriatrics, is notable for jointly examining the effect of dementia care interventions on both staff and resident quality outcomes. This is an important contribution to improving dementia care because it recognizes the dynamic and dyadic relationship between residents and their caregivers in residential settings. While evidence exists on the dyadic effect of family caregiver intervention on dementia patient outcomes (Gitlin and Hodgson, 2015), less attention has been given to formal caregivers in institutional settings (Dellefield et al., 2015).

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Health and long-term care of the elderly with dementia in rural Thailand: a cross-sectional survey through their caregivers

BMJ Open ◽

10.1136/bmjopen-2019-032637 ◽

2020 ◽

Vol 10 (3) ◽

pp. e032637

Author(s):

Nalinee N Chuakhamfoo ◽

Pudtan Phanthunane ◽

Sirintorn Chansirikarn ◽

Supasit Pannarunothai

Keyword(s):

Long Term Care ◽

Informal Caregivers ◽

The Elderly ◽

Dementia Care ◽

Secondary Outcome ◽

Cross Sectional ◽

Term Care ◽

Dementia Severity ◽

People With Dementia

ObjectiveTo describe the circumstances of the elderly with dementia and their caregivers’ characteristics in order to examine factors related to activities of daily living (ADL) and household income to propose a long-term care policy for rural areas of Thailand.SettingA cross-sectional study at the household level in three rural regions of Thailand where there were initiatives relating to community care for people with dementia.ParticipantsCaregivers of 140 people with dementia were recruited for the study.Primary and secondary outcome measuresSocioeconomic characteristics including data from assessment of ADL and instrumental ADL and the Thai version of Resource Utilisation in Dementia were collected. Descriptive statistics were used to explain the characteristics of the elderly with dementia and the caregivers while inferential statistics were used to examine the associations between different factors of elderly patients with dementia with their dependency level and household socioeconomic status.ResultsEighty-six per cent of the dementia caregivers were household informal caregivers as half of them also had to work outside the home. Half of the primary caregivers had no support and no minor caregivers. The elderly with dementia with high dependency levels were found to have a significant association with age, dementia severity, chance of hospitalisation and number of hospitalisations. Though most of these rural samples had low household incomes, the patients in the lower-income households had significantly lower dementia severity, but, with the health benefit coverage had significantly higher chances of hospitalisation.ConclusionAs the informal caregivers are the principal human resources for dementia care and services in rural area, policymakers should consider informal care for the Thai elderly with dementia and promote it as the dominant pattern of dementia care in Thailand.

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