scholarly journals Case management for people with dementia living at home and their informal caregivers: A scoping review

2021 ◽  
Author(s):  
Christine Schiller ◽  
Manuela Grünzig ◽  
Stephanie Heinrich ◽  
Gabriele Meyer ◽  
Anja Bieber
Keyword(s):  
Case Management ◽  
Scoping Review ◽  
Informal Caregivers ◽  
People With Dementia ◽  
At Home

The experiences, priorities, and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review

Dementia ◽  
2021 ◽  
pp. 147130122110126
Author(s):  
Alexandra E Harper ◽  
Lauren Terhorst ◽  
Marybeth Moscirella ◽  
Rose L Turner ◽  
Catherine V Piersol ◽  
...  
Keyword(s):  
Nursing Home ◽  
Nursing Homes ◽  
Home Care ◽  
Scoping Review ◽  
Informal Caregivers ◽  
Nursing Home Care ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

Background Person-centered care has been shown to increase desired outcomes for people with dementia, yet informal caregivers’ dissatisfaction with care is often reported. For those living in a nursing home, informal caregivers are uniquely situated to provide key insights into the individual’s care. However, little is known of the informal caregivers’ perspective, which hinders efforts to improve their satisfaction with person-centered nursing home care. Thus, we examined the comprehensive experiences, priorities, and perceptions of informal caregivers of nursing home residents with dementia. Methods In collaboration with stakeholders, a scoping review of Medline (Ovid), EMBASE.com , CINAHL (EBSCO), the Cochrane Library (Wiley), and PsycINFO (Ovid) databases from January 2000 to July 2020 was conducted. Data were extracted reflecting the experiences, priorities, and preferences of caregivers of people with dementia residing in nursing homes. Results We identified 114 articles that revealed nine themes: (1) communication, (2) transition to nursing home, (3) quality of care, (4) quality of life, (5) informal caregiver role, (6) knowledge of dementia, (7) end-of-life preferences, (8) medication use to manage neuropsychiatric behaviors, and (9) finances. Conclusion Informal caregivers described aspects of care that led to both positive and negative experiences with and perceptions of nursing home care. The shortcomings in communication were discussed most frequently, indicating a high priority area. While researchers define the identified themes individually, informal caregivers perceive them to be interwoven as they relate to person-centered care delivery. Although we did not assess the quality of included articles, by identifying themes relevant to caregivers’ perspectives of nursing home care, our findings may help to inform efforts to optimize caregivers’ satisfaction with nursing home care for residents with dementia.

Strategies to engage people with dementia and their informal caregivers in dyadic intervention: A scoping review

2021 ◽  
Vol 42 (2) ◽  
pp. 412-420
Author(s):  
Daphne Sze Ki Cheung ◽  
Shuk Kwan Tang ◽  
Ken Hok Man Ho ◽  
Cindy Jones ◽  
Mimi Mun Yee Tse ◽  
...  
Keyword(s):  
Scoping Review ◽  
Informal Caregivers ◽  
People With Dementia

An evaluation of preventive sensor technology for dementia care

2013 ◽  
Vol 19 (2) ◽  
pp. 95-100 ◽  
Author(s):  
Nienke Nijhof ◽  
Lisette Jewc Van Gemert-Pijnen ◽  
Ryan Woolrych ◽  
Andrew Sixsmith
Keyword(s):  
Monitoring System ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Warning System ◽  
Sensor Technology ◽  
Burden Of Care ◽  
Emergency Intervention ◽  
People With Dementia ◽  
Staying At Home ◽  
At Home

We evaluated a commercially-available monitoring system for older people with dementia living at home. The system was designed to detect problems before they require crisis intervention. Fourteen clients from two healthcare organisations in the Netherlands used the system over a 9-month period. The formal and informal caregivers were interviewed, project group meetings were observed, nurse diaries were analysed and a cost analysis performed. Clients and informal caregivers reported enhanced feelings of safety and security as a result of having the system installed in the home. The system appeared to reduce the burden of care on the informal caregiver and had the potential to allow people to live at home for longer. There were financial savings for clients staying at home with the technology compared with the costs of staying in a nursing home: for 10 clients living at home for 2 months, the savings were 23,665 euro. The study showed that the monitoring system represents a potentially useful early warning system to detect a situation before it requires emergency intervention.

scholarly journals 553 - A promising Dutch initiative for highly intelligent seniors affected by dementia: a qualitative evaluation of Studiegroepen day time activities in long term care

2021 ◽  
Vol 33 (S1) ◽  
pp. 94-94
Author(s):  
Ruslan Leontjevas ◽  
Monique Luyendijk ◽  
Rico Kremer ◽  
Debby L. Gerritsen
Keyword(s):  
Long Term Care ◽  
Informal Caregivers ◽  
Barriers And Facilitators ◽  
Structured Interviews ◽  
Term Care ◽  
Highly Educated ◽  
Positive Effects ◽  
People With Dementia ◽  
At Home

Background:Long term care organisations in the Netherlands organize day time activities for people with dementia who receive care at home to prevent burden of informal caregivers. Clients with dementia that are characterised as highly educated and/or highly intelligent often refuse to participate in such activities. Boredom, a lack of association with and unwillingness to mix with other participants are often reported. In 2006, the spiritual counselling department of long term care organisation Respect, The Hague, started with Studiegroepen (pronounced ‘studee-groo-pen’, study groups). This initiative provides adjusted leisure activities and group conversations about present-day topics and shared life experiences.Existential philosophical themes form the basis for discussions. Although Studiegroepen seems very successful and there are long waiting lists, the program is barely studied and is unknown in other organisations.Aims:(1) to explore the opinions of the participants, their informal caregivers (mainly partners), and spiritual counsellors about Studiegroepen and the way the program meets the participants needs for autonomy, competence and relatedness (Self Determination Theory); (2) for the development of implementation material for other organisations, the aim was to reveal specific components of the program and to explore their barriers and facilitators.Results:A thematic analysis in Atlas.ti of semi-structured interviews with 15 clients, eight informal caregivers and four spiritual counsellors revealed extremely positive evaluations. There were strong indications that the program meets clients’ needs for autonomy, competence and relatedness. A striking example of a positive evaluation was a cancellation of relocation of a client-partner couple due to the lack of Studiegroepen in that city. Results suggest positive effects on mood, and quality of life. Several informal caregivers perceived a delay in dementia progression. The research revealed specific program components and barriers and facilitators to implement them.Conclusions:Studiegroepen is a very positively evaluated initiative for highly educated and/or highly intelligent long time care clients with dementia living at home. This initiative should be systematically studied and described, while implementation material needs to be developed. This may help to introduce the program in other organisations and to further explore effects on outcomes in participants, and in informal caregivers.

Needs of people with dementia and their informal caregivers concerning assistive technologies

Pflege ◽  
2019 ◽  
Vol 32 (6) ◽  
pp. 295-304 ◽  
Author(s):  
Julian Hirt ◽  
Melanie Burgstaller ◽  
Adelheid Zeller ◽  
Thomas Beer
Keyword(s):  
Scoping Review ◽  
Literature Search ◽  
Informal Caregivers ◽  
End Users ◽  
Assistive Technologies ◽  
Web Searching ◽  
People With Dementia ◽  
All Solutions ◽  
Study Designs ◽  
Comprehensive Literature Search

Abstract. Background and objective: Assistive technologies might be a suitable option for supporting people with dementia and their informal caregivers. To avoid “one-fits-all”-solutions and to design useful technologies, it is essential to consider the end-users’ needs. The objective of this review was to examine the needs of people with dementia and their informal caregivers with regard to assistive technologies. Methods: We conducted a scoping review based on a comprehensive literature search in databases, handsearching, and free web searching. Additionally, we performed citation tracking of included studies. We included all types of study designs. Two researchers independently selected the studies. The results were thematically categorised by two researchers. Results: The search yielded 7160 references. 18 of 24 included studies were qualitative. The studies had been conducted in 13 different countries, mostly in Europe. The sample size ranged between two and 270 participants. Most of the studies involved people with dementia as well as informal caregivers. The analysis resulted in eleven themes. The themes could be assigned to three domains: “needed technologies”, “characteristics of needed technologies”, and “information about technologies”. Conclusions: The results might guide future usage, development and research addressing end users’ needs with regard to assistive technologies.

scholarly journals Factors Influencing the Adoption of Smart Health Technologies for People With Dementia and Their Informal Caregivers: Scoping Review and Design Framework (Preprint)

2018 ◽  
Author(s):  
Estefanía Guisado-Fernández ◽  
Guido Giunti ◽  
Laura M Mackey ◽  
Catherine Blake ◽  
Brian Michael Caulfield
Keyword(s):  
Home Care ◽  
Scoping Review ◽  
Informal Caregivers ◽  
Cochrane Library ◽  
Successful Implementation ◽  
Design Framework ◽  
Health Technologies ◽  
Factors Influencing ◽  
People With Dementia ◽  
Smart Health

BACKGROUND Smart Health technologies (s-Health technologies) are being developed to support people with dementia (PwD) and their informal caregivers at home, to improve care and reduce the levels of burden and stress they experience. However, although s-Health technologies have the potential to facilitate this, the factors influencing a successful implementation in this population are still unknown. OBJECTIVE The aim of this study was to review existing literature to explore the factors influencing PwD and their informal caregivers’ adoption of s-Health technologies for home care. METHODS Following the Arksey and O’Malley methodology, this study is a scoping review providing a narrative description of the scientific literature on factors influencing s-Health technology adoption for PwD and their informal caregivers. A search was conducted using PubMed, the Cochrane library, the IEEE library, and Scopus. Publications screening was conducted by 2 researchers based on inclusion criteria, and full-text analysis was then conducted by 1 researcher. The included articles were thematically analyzed by 2 researchers to gain an insight into factors influencing adoption that PwD and their informal caregivers have to encounter when using s-Health technologies. Relevant information was identified and coded. Codes were later discussed between the researchers for developing and modifying them and for achieving a consensus, and the researchers organized the codes into broader themes. RESULTS Emerging themes were built in a way that said something specific and meaningful about the research question, creating a list of factors influencing the adoption of s-Health technologies for PwD and their informal caregivers, including attitudinal aspects, ethical issues, technology-related challenges, condition-related challenges, and identified gaps. A design framework was created as a guide for future research and innovation in the area of s-Health technologies for PwD and their informal caregivers: DemDesCon for s-Health Technologies. DemDesCon for s-Health Technologies addresses 4 domains to consider for the design and development of s-Health technologies for this population: cognitive decline domain, physical decline domain, social domain, and development domain. CONCLUSIONS Although s-Health technologies have been used in health care scenarios, more work is needed for them to fully achieve their potential for use in dementia care. Researchers, businesses, and public governments need to collaborate to design and implement effective technology solutions for PwD and their informal caregivers, but the lack of clear design guidelines seems to be slowing the process. We believe that the DemDesCon framework will provide them with the guidance and assistance needed for creating meaningful devices for PwD home care and informal caregivers, filling a much-needed space in the present knowledge gap.

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

2019 ◽  
Author(s):  
Estefania Guisado-Fernandez ◽  
Catherine Blake ◽  
Laura Mackey ◽  
Paula Alexandra Silva ◽  
Dermot Power ◽  
...  
Keyword(s):  
Home Care ◽  
Functional Status ◽  
Disease Progression ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Well Being ◽  
People With Dementia ◽  
Mental Well Being ◽  
At Home

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. INTERNATIONAL REGISTERED REPORT RR2-10.2196/13280

scholarly journals Features of the social and built environment that contribute to the well-being of people with dementia who live at home: A scoping review

2021 ◽  
Vol 67 ◽  
pp. 102483
Author(s):  
Jodi Sturge ◽  
Susanna Nordin ◽  
Divya Sussana Patil ◽  
Allyson Jones ◽  
France Légaré ◽  
...  
Keyword(s):  
Built Environment ◽  
Scoping Review ◽  
Well Being ◽  
People With Dementia ◽  
The Social ◽  
At Home

scholarly journals User-Driven Living Lab for Assistive Technology to Support People With Dementia Living at Home: Protocol for Developing Co-Creation–Based Innovations (Preprint)

2018 ◽  
Author(s):  
Robin CP van den Kieboom ◽  
Inge MB Bongers ◽  
Ruth E Mark ◽  
Liselore JAE Snaphaan
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Informal Caregivers ◽  
Monthly Basis ◽  
Outcome Measurements ◽  
The North ◽  
People With Dementia ◽  
Living Lab ◽  
First Results ◽  
Over Time ◽  
At Home

BACKGROUND Owing to no cure for dementia currently, there is an urgent need to look for alternative ways to support these people and their informal caregivers. Carefully designed interventions can answer the unmet needs of both people with dementia and their informal caregivers in the community. However, existing products, systems, and services are often too complex or unsuitable. OBJECTIVE This study aims to identify, longitudinally, the changing needs (as dementia progresses) of people with dementia living at home and their informal caregivers. By developing co-creation-based innovations, these changing needs will hopefully be met. METHODS A user-driven Living Lab design is used to structurally explore the needs over time of people with dementia (and their informal caregivers) living in the community in the North Brabant region of the Netherlands. In addition, co-creation-based innovations will be developed, tested, and evaluated by these people and their caregivers at home. All participants will complete complaints-oriented questionnaires at 3 time-points—at the baseline, 1 year, and 2 years after they start participating. Home interviews are scheduled to explore if and how these complaints translate into participants’ specific needs or wishes. Focus groups meet on a monthly basis to further identify the needs of people with dementia and their informal caregivers and provide feedback to the stakeholders. In the context field, participants have an opportunity to actually test the products at home and provide feedback. Quantitative outcome measurements include neuropsychiatric symptoms, cognitive decline, independence in activities of daily living, safety, and caregiver burden. Qualitative outcome measurements include feedback to the stakeholders regarding the needs of people with dementia and their informal caregivers and how these needs change over time, as well as user experiences about the specific innovations. RESULTS Participant recruitment will start in September 2018 and is ongoing. The first results of data analyses are expected in the spring of 2019. CONCLUSIONS The overall aim of Innovate Dementia 2.0 is to facilitate person-centered innovations developed for people with dementia and their informal caregivers at all stages as dementia progresses. This should lead to newly designed concepts and innovations, which are better able to answer the needs of people with dementia and their caregivers in the community. INTERNATIONAL REGISTERED REPOR PRR1-10.2196/10952

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