scholarly journals Factors influencing Implementation of eHealth technologies to Support Informal Dementia Care: An Umbrella Review (Preprint)

2021 ◽  
Author(s):  
Sofia Bastoni ◽  
Christian Wrede ◽  
Marcia Cristina da Silva ◽  
Robbert Sanderman ◽  
Andrea Gaggioli ◽  
...  
Keyword(s):  
Informal Caregiver ◽  
Informal Caregivers ◽  
Dementia Care ◽  
Community Dwelling ◽  
Future Research ◽  
Umbrella Review ◽  
Home Setting ◽  
Factors Influencing ◽  
Sustainable Implementation ◽  
People With Dementia

BACKGROUND The increasing number of community-dwelling people with dementia worldwide underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. Sustainable implementation of eHealth technologies within this target group can, however, be difficult. OBJECTIVE The goal of this study was to gain a more complete understanding of why, although numerous eHealth technologies are designed to support people with dementia and their informal caregivers at home, it is often found difficult to implement them in practice. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. METHODS Following an umbrella review design, 5 different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews, resulting in 3109 hits. After removing 904 duplicates and 2061 irrelevant papers, 144 results were considered for full-text screening. Finally, 21 papers were included for this review. A combination of deductive and inductive thematic analysis was performed, using the NASSS framework for organizing the findings. RESULTS We mostly identified technologies designed to be used “by informal caregivers”, followed by technologies used “by people with dementia” and technologies used “with people with dementia”. Within those user groups, most represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health and safety, (ii) technologies for supporting memory, orientation and day structure, and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most identified factors influencing sustainable implementation related to the condition of dementia, characteristics of the technology, the expected or perceived value of users, and characteristics of the informal caregiver. Considerably less has been reported on factors related to the implementing organization and technology supplier, the wider institutional and sociocultural context of policy and regulations, and the continued adaptation of technology over time. CONCLUSIONS Our study created a comprehensive overview of eHealth technologies studied in the context of informal dementia care and contributes to a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and the continuous adaptation on the long term. Although future research is needed, the current findings can help researchers and stakeholders improving the development and implementation of eHealth technologies to support informal dementia care.

scholarly journals Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: An Umbrella Review

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 946-946
Author(s):  
Sofia Bastoni ◽  
Christian Wrede ◽  
Marcia C da Silva ◽  
Robbert Sanderman ◽  
Andrea Gaggioli ◽  
...  
Keyword(s):  
Success Factors ◽  
Home Monitoring ◽  
Communication Technologies ◽  
Dementia Care ◽  
Future Research ◽  
Comprehensive Overview ◽  
Factors Influencing ◽  
Sustainable Implementation ◽  
People With Dementia ◽  
Inductive Thematic Analysis

Abstract The increase of People with Dementia (PwD) living at home underscores the need for innovative eHealth technologies that support both patients and informal caregivers (IC). Sustainable implementation of eHealth technologies within this target group can, however, be difficult. Our study aims at providing an overview of (1) technologies employed in the context of informal dementia care (IDC) and (2) factors influencing the implementation of these technologies. Five databases were searched for (systematic) reviews. 21 reviews were included. A combination of deductive and inductive thematic analysis was performed, using the NASSS Framework to organize the findings. We identified technologies used “by IC”, “by PwD” and “with PwD”. Most represented technologies included: (i) devices for in-home monitoring (ii) technologies for supporting memory, orientation, and day structure, and (iii) communication technologies. Most factors influencing implementation related to the condition of dementia, characteristics of the technology, the expected/perceived value by users, and the characteristics of the IC. Considerably less has been reported on factors related to the implementing organization, the technology supplier, the wider institutional and sociocultural context of policy and regulations, and the adaptation of technology over time. Our study 1) created a comprehensive overview of eHealth technologies employed in the context of IDC and contributes to a better understanding of factors influencing their implementation, and 2) uncovered a knowledge gap regarding success factors for implementation related to the wider context. Although future research is needed, these findings can help researchers improving the development and implementation of eHealth technologies to support IDC.

scholarly journals Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

2020 ◽  
Vol 9 (1) ◽  
Author(s):  
Charles James ◽  
Catherine Walshe ◽  
Katherine Froggatt
Keyword(s):  
Systematic Review ◽  
Negative Impact ◽  
Current Knowledge ◽  
Informal Caregivers ◽  
Informal Caregiving ◽  
Bibliographic Databases ◽  
Future Research ◽  
Advanced Dementia ◽  
Home Setting ◽  
Search Terms

Abstract Background The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences. Methods This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers. Discussion Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers’ general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting. Systematic review registration This review is registered with PROSPERO (CRD42020183649).

scholarly journals Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme

2021 ◽  
Author(s):  
Yu-Tzu Wu ◽  
◽  
Linda Clare ◽  
Ian Rees Jones ◽  
Sharon M. Nelis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Urban Areas ◽  
Positive Association ◽  
Deprivation Level ◽  
Community Dwelling ◽  
Future Research ◽  
Interaction Terms ◽  
Perceived Availability ◽  
People With Dementia

Abstract Purpose The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. Methods This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer’s Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. Results Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95% CI 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95% CI 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors. Conclusions Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.

Library services enriching community engagement for dementia care: The Tales & Travels Program at a Canadian Public Library as a case study

2021 ◽  
pp. 096100062110651
Author(s):  
Jiamin Dai ◽  
Joan C. Bartlett ◽  
Karyn Moffatt
Keyword(s):  
Public Libraries ◽  
Public Library ◽  
Well Being ◽  
Dementia Care ◽  
Future Research ◽  
Library Services ◽  
Structured Interviews ◽  
Community Based ◽  
People With Dementia

Growing dementia-friendly library services are contributing to community-based dementia care. Emerging community programs in libraries and museums provide notable opportunities for promoting engagement and inclusivity, but these programs have yet to receive in-depth assessments and analyses to guide future research and practice. This paper presents a case study examining a social and storytelling program for people with dementia run by a Canadian public library. It investigates two research questions: How can public library programs contribute to community-based dementia care? And what are public libraries’ strengths and challenges in running programs for people with dementia? The study involves participant observations of the program and semi-structured interviews with people with dementia, caregivers, and program facilitators (librarians and Alzheimer Society coordinators). Through thematic analysis of fieldnotes and transcripts, the study reveals how this inclusive platform supports engagement, fosters relationships, helps caregivers, and reaches broader communities. This research further uncovers the librarians’ diversified roles as demonstrated through their collaboration with professionals, preparation and research, and facilitation of the sessions. This paper advances librarianship research on enriching community-based dementia care, including furthering inclusivity and engagement and extending accessible library services. By analyzing library programming for the dementia community and assessing its strengths and challenges, the paper highlights librarians’ awareness of the community’s evolving needs and their collaboration with other professionals. It offers practical insights on useful resources and emerging best practices that will hopefully inspire other initiatives in which information professionals can help improve the well-being of vulnerable populations.

Medication Management for Community-dwelling Older People with Dementia and Chronic Illness

2008 ◽  
Vol 14 (1) ◽  
pp. 25 ◽  
Author(s):  
Debbie Kralik ◽  
Kate Visentin ◽  
Geoff March ◽  
Barbara Anderson ◽  
Andrew Gilbert ◽  
...  
Keyword(s):  
Chronic Illness ◽  
Older People ◽  
Medication Management ◽  
Community Dwelling ◽  
Consumer Involvement ◽  
Future Research ◽  
Coordination Of Care ◽  
Health Providers ◽  
People With Dementia ◽  
Community Dwelling Older People

The purpose of this paper is to report the findings of an integrative review of the literature on medication management for individuals who live in the community and have both chronic illness and mild to moderate dementia. The aim of the review was to summarise what is known about this topic, evaluate and compare previous research on the topic of medication management for people with dementia, and locate gaps in current work, thus pointing to directions for future research. Dementia is a national health priority for Australia. A significant component of community care for people with dementia is the management and administration of the medications required for other chronic conditions. Medication management is a broad term that encompasses several aspects, such as client-centred medication review, rational prescribing and support, repeat prescribing, client information/education, capacity to communicate with multiple health providers and having access to medicines. Cognitive impairment has been associated with medication management issues so it is important to ensure quality outcomes of medicine use by community-dwelling older people with dementia. The literature revealed a number of issues, such as the importance of person-centred care, the need for the coordination of care, and consumer partnerships in medication management. These are all important considerations in planning primary care services to support people with dementia and chronic illnesses. People with dementia who have chronic illness require coordinated, tailored, and flexible care processes in the community. There exists a range of services and programs such as home medicine reviews to support people living in the community with chronic illness and dementia; however, there is little coordination of care and evaluation of interventions is, at best, inconsistent. Currently, Australia lacks an integrative primary health care (PHC) framework, within which consumer involvement in decision-making and/or care planning is valued and sought. Current services are limited in the degree to which there is collaboration between key partners and Australian PHC initiatives are fragmented and have limited impact on service delivery.

Perspectives of the community-based dementia care workforce: “occupational communion” a key finding from the Work 4 Dementia Project

2013 ◽  
Vol 25 (5) ◽  
pp. 765-774 ◽  
Author(s):  
Kate-Ellen J. Elliott ◽  
Christine M. Stirling ◽  
Angela J. Martin ◽  
Andrew L. Robinson ◽  
Jennifer L. Scott
Keyword(s):  
Organizational Support ◽  
Dementia Care ◽  
Future Research ◽  
Work Experiences ◽  
Structured Interviews ◽  
Community Based ◽  
Job Roles ◽  
People With Dementia ◽  
Care Workers ◽  
Strong Attachment

ABSTRACTBackground: Community care workers’ experience of delivering support to people with dementia is less researched than that of residential workers. The purpose of the study is to explore community-based dementia care workers’ perspectives about their roles and the contextual variables that impact upon their work experiences.Method: A qualitative design was employed. Twenty-five community dementia care workers (average age 53 years, majority female and employed casually) participated in standardized semi-structured interviews about their job roles, training, employer agenda, organizational support, and intention to stay. A deductive approach to Interpretive Phenomenological Analysis was adopted to identify key themes.Results: Three themes highlighted workers’ experiences. Occupational communion described strong attachment to clients and a desire for greater connection with colleagues. Job demands described the challenges of work, which varied with intensity. Job resources ranged from positive (strong organizational commitment) to negative (poor pay and conditions). Occupational communion was identified as a concept that exists at the interface between social and organization psychology that was perceived to be essential for adaptive coping. Identifying themes informed a conceptual model for designing intervention components aimed at improving workers’ skills, capabilities, and employer supportive functions.Conclusion: Occupational communion may be particularly relevant for women's caring careers and future research is needed to explore the relevance of this concept for men. To determine reliable change associated with interventions that target occupational communion, further investigation is required in relation to measurement approaches.

scholarly journals Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

2020 ◽  
Author(s):  
Charles James ◽  
Catherine Walshe ◽  
Katherine Froggatt
Keyword(s):  
Systematic Review ◽  
Negative Impact ◽  
Current Knowledge ◽  
Informal Caregivers ◽  
Informal Caregiving ◽  
Bibliographic Databases ◽  
Future Research ◽  
Advanced Dementia ◽  
Home Setting ◽  
Search Terms

Abstract BackgroundThe knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences.MethodsThis review adopts a narrative synthesis approach. A search will be conducted for studies written in English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science, and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed method designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home-setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategy will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers.DiscussionPsychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers’ general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting.Systematic review registrationThis review was registered and published online in the PROSPERO database of systematic reviews (www.crd.york.ac.uk/PROSPERO registration number: #CRD42020183649).

Conclusion: navigating 21st-century remote and rural dementia care and a future research agenda

2020 ◽  
pp. 285-298
Author(s):  
Jane Farmer ◽  
Debra Morgan ◽  
Anthea Innes
Keyword(s):  
21St Century ◽  
Research Agenda ◽  
Dementia Care ◽  
Future Research ◽  
Rural And Remote ◽  
High Quality ◽  
Policy Practice ◽  
Future Research Agenda ◽  
People With Dementia ◽  
New Models

This chapter summarises key themes across rural and remote dementia care internationally. It highlights consistent issues as well as innovations and points to note, across the three areas of policy, practice and research. The chapter concludes there is still significant work to be done in finding and translating new models for providing high quality rural dementia care and thus good experiences for people with dementia, carers and communities. The chapter throws down the gauntlet inviting more research and study in this area.

Development of Support Networks in Informal Dementia Care: Guided, Organic, and Chance Routes through Support

2012 ◽  
Vol 31 (4) ◽  
pp. 445-455 ◽  
Author(s):  
Valerie Egdell
Keyword(s):  
Informal Care ◽  
Informal Caregiver ◽  
Dementia Care ◽  
Qualitative Approach ◽  
Support Networks ◽  
Health Conditions ◽  
People With Dementia ◽  
Aging Populations

ABSTRACTIncreasing knowledge about factors that shape the development of care networks for people with dementia is imperative in countries with aging populations that are relying increasingly on informal care. This study used a qualitative approach to identify the complex routes through support taken by informal caregivers for people with dementia in the development of their care networks. Interview data were collected from 13 caregivers. Three routes through support were identified: guided routes, organic routes, and chance routes. This article’s principal argument is that these routes are the outcomes not only of the resources that caregivers draw upon, but also of their varying expectations regarding the role of the informal caregiver. The identification of the three routes through support provides a potentially valuable framework for examining the experiences of caregivers for individuals with other long-term health conditions.

Keeping the person with dementia and the informal caregiver together: a systematic review of psychosocial interventions

2016 ◽  
Vol 29 (4) ◽  
pp. 583-593 ◽  
Author(s):  
Annemarie Rausch ◽  
Monique A. A. Caljouw ◽  
Eva S. van der Ploeg
Keyword(s):  
Social Factors ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Psychosocial Interventions ◽  
Skills Training ◽  
Narrative Synthesis ◽  
People With Dementia ◽  
Person With Dementia ◽  
Support Relationships ◽  
The Relationship

ABSTRACTBackground:Social support, relationships, and closeness are emphasized as important by both people with dementia and their informal caregivers. Psychosocial interventions might be helpful to reinforce the relationship between a person with dementia and his or her informal caregiver. Therefore, this review explores what types of psychosocial interventions have been provided for people with dementia and their informal caregivers together, and the effectiveness of these interventions.Methods:PubMed, PsychInfo, Cinahl, and references of key papers were searched for studies describing a psychosocial intervention for people with dementia and their informal caregivers together. Psychosocial interventions were defined as focusing primarily on psychological or social factors.Results:A total of seven publications describing six studies were identified as eligible for inclusion in this review. Interventions ranged in focus from skills training to viewing/making art. The methodology of the studies varied, especially regarding the outcome measures used. The results of individual studies were mixed. A narrative synthesis of the included studies is given.Conclusion:Although caregiving dyads emphasize the importance of their relationship, this is mostly not taken into consideration in the design and effect evaluations of the interventions. Improved research is needed on this subject, which focuses on people with dementia living in the community and those living in nursing homes.

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