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

scholarly journals Interaction of caregiver-expressed emotions and neuropsychiatric symptoms in persons with dementia: a longitudinal cohort study

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e046869
Author(s):  
Eva YL Tan ◽  
Marjolein E de Vugt ◽  
Kay Deckers ◽  
Jos MGA Schols ◽  
Frans RJ Verhey
Keyword(s):  
Cohort Study ◽  
Expressed Emotion ◽  
Neuropsychiatric Symptoms ◽  
Informal Caregivers ◽  
Dyadic Interaction ◽  
Longitudinal Cohort Study ◽  
Longitudinal Cohort ◽  
Increased Risk ◽  
Over Time ◽  
At Home

ObjectivesNeuropsychiatric symptoms (NPS) have a major impact in persons with dementia (PwD). The interaction between the caregiver and the person with dementia may be related to the emergence of NPS. The concept of expressed emotion (EE) is used to capture this dyadic interaction. The aim of the present study is to examine longitudinally the association between EE in caregivers and NPS in PwD living at home.DesignA longitudinal cohort study with 2 years of follow-up.SettingPwD and their informal caregivers living at home in the south of the Netherlands.Participants112 dyads of PwD and their caregivers from the MAAstricht Study of BEhavior in Dementia.Main outcome measuresEE was measured at baseline with the Five-Minute Speech Sample and was used to classify caregivers in a low-EE or high-EE group. Associations between EE and neuropsychiatric subsyndromes (hyperactivity, mood and psychosis) measured with the Neuropsychiatric Inventory (NPI) were analysed over time.ResultsSeventy-six (67.9%) caregivers were classified in the low-EE group and 36 (32.1%) in the high-EE group. There was no difference between the EE groups in mean NPI scores over time. In the high-EE group, hyperactivity occurred more frequently than in the low-EE group at baseline (p=0.013) and at the other time points, but the mean difference was not always significant. There were no differences for the mood and psychosis subsyndromes. PwD with caregivers scoring high on the EE subcategory critical comments had an increased risk of institutionalisation (OR 6.07 (95% CI 1.14 to 32.14, p=0.034)) in comparison with caregivers scoring low on critical comments.ConclusionsHigh EE in informal caregivers is associated with hyperactivity symptoms in PwD. This association is likely to be bidirectional. Future studies investigating this association and possible interventions to reduce EE are needed.

The course of neuropsychiatric symptoms in patients with dementia in primary care

2018 ◽  
Vol 36 (4) ◽  
pp. 437-444 ◽  
Author(s):  
Petra Borsje ◽  
Peter L B J Lucassen ◽  
Hans Bor ◽  
Roland B Wetzels ◽  
Anne Margriet Pot ◽  
...  
Keyword(s):  
Primary Care ◽  
Neuropsychiatric Symptoms ◽  
Informal Caregivers ◽  
The People ◽  
People With Dementia ◽  
The Mean ◽  
Professional Care ◽  
State Examination ◽  
Cumulative Prevalence

Abstract Background During the course of dementia, most people develop some type of neuropsychiatric symptoms (NPS), which result in lower quality of life, high caregiver burden, psychotropic drug use and a major risk of institutionalization. Studies on NPS in people with dementia have been mainly conducted in clinical centres or psychiatric services. Objectives To investigate the course of NPS in people with dementia in primary care. Methods Analysis of (cumulative) prevalence and incidence, persistence and resolution based on data collected during an assessment at home of a prospective naturalistic cohort study in primary care in a sample of 117 people with dementia and their informal caregivers. Subsyndromes of NPS were assessed with the Neuropsychiatric Inventory (NPI) and Cohen-Mansfield Agitation Inventory. Multivariate analyses were used to detect determinants for the course of NPS. Results The mean age of the people with dementia was 78.6 years, and 52% were female. Mean Mini-Mental State Examination total score was 19.5, mean NPI total score 15.7. The most prevalent clinically relevant subsyndromes of the NPI were hyperactivity and mood/apathy, and the most prevalent individual NPS were aberrant motor behaviour (28%), agitation/aggression (24%) and apathy/indifference (22%). Of the people with dementia, 72.3% had one or more symptoms of the mood/apathy and 75.3% of the hyperactivity subsyndrome. Conclusions GPs should be aware of NPS in people with dementia and should actively identify them when they visit these patients or when informal caregivers consult them. Timely diagnosing facilitates adequate professional care.

scholarly journals An individualised, non-pharmacological treatment strategy associated with an improvement in neuropsychiatric symptoms in a man with dementia living at home

2019 ◽  
Vol 12 (5) ◽  
pp. e229048 ◽  
Author(s):  
Mark McLean Carter ◽  
Angelina Wei ◽  
Xinlei Li
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Emergency Department Visits ◽  
Pharmacological Interventions ◽  
First Line ◽  
Term Care ◽  
People With Dementia ◽  
Care Facilities ◽  
At Home

More than 90% of people with dementia experience neuropsychiatric symptoms which are often distressing and can result in early institutionalisation, diminished quality of life, increased frequency of emergency department visits along with stress and ill-health in caregivers. Non-pharmacological interventions are recommended as first-line treatment for neuropsychiatric symptoms, instead of medications such as atypical antipsychotics which have significant side effects. Most systematic reviews of non-pharmacological interventions for neuropsychiatric symptoms of dementia focus on patients in long-term care facilities and there are a limited number of research studies assessing the use of non-pharmacological interventions for patient’s living at home. In this case report, we discuss an elderly man with dementia whose cognitive symptoms were accompanied by significant neuropsychiatric symptoms of suspicion, delusions, agitation and aggression. We describe how a programme of individualised, non-pharmacological interventions was associated with an improvement in neuropsychiatric symptoms within 3 months.

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 Exploring life-space in the nursing home. An observational longitudinal study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Karen Sverdrup ◽  
Sverre Bergh ◽  
Geir Selbæk ◽  
Jūratė Šaltytė Benth ◽  
Bettina Husebø ◽  
...  
Keyword(s):  
Nursing Home ◽  
Physical Performance ◽  
Neuropsychiatric Symptoms ◽  
Central Element ◽  
Life Space ◽  
People With Dementia ◽  
Medical Health ◽  
Group 2 ◽  
The Impact ◽  
Over Time

Abstract Background Traditional performance-based measurements of mobility fail to recognize the interaction between the individual and their environment. Life-space (LS) forms a central element in the broader context of mobility and has received growing attention in gerontology. Still, knowledge on LS in the nursing home (NH) remains sparse. The aim of this study was to identify LS trajectories in people with dementia from time of NH admission, and explore characteristics associated with LS over time. Methods In total, 583 people with dementia were included at NH admission and assessed biannually for 3 years. LS was assessed using the Nursing Home Life-Space Diameter. Association with individual (age, sex, general medical health, number of medications, pain, physical performance, dementia severity, and neuropsychiatric symptoms) and environmental (staff-to-resident ratio, unit size, and quality of the physical environment) characterises was assessed. We used a growth mixture model to identify LS trajectories and linear mixed model was used to explore characteristics associated with LS over time. Results We identified four groups of residents with distinct LS trajectories, labelled Group 1 (n = 19, 3.5%), Group 2 (n = 390, 72.1%), Group 3 (n = 56, 10.4%), Group 4 (n = 76, 14.0%). Being younger, having good compared to poor general medical health, less severe dementia, more agitation, less apathy, better physical performance and living in a smaller unit were associated with a wider LS throughout the study period. Conclusion From NH admission most NH residents’ LS trajectory remained stable (Group 2), and their daily lives unfolded within their unit. Better physical performance and less apathy emerged as potentially modifiable characteristics associated with wider LS over time. Future studies are encouraged to determine whether LS trajectories in NH residents are modifiable, and we suggest that future research further explore the impact of environmental characteristics.

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

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.

scholarly journals Understanding Family Caregivers’ Needs to Support Relatives with Advanced Progressive  Disease at Home: An Ethnographic Study in Rural Portugal

2020 ◽  
Author(s):  
Maria Joao Cardoso Teixeira ◽  
Wilson Abreu ◽  
Nilza Costa ◽  
Matthew Maddocks
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Progressive Disease ◽  
Ethnographic Study ◽  
Care Needs ◽  
The North ◽  
Increased Risk ◽  
Caregiver Needs ◽  
Over Time ◽  
At Home

Abstract Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014-16 using serial participant observations (n=33) and in-depth interviews (n=11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.

scholarly journals Biodynamic Lighting and Functional Disability: A Single-Case Experimental Design in Three Community Dwelling People with Dementia

2021 ◽  
Vol 11 (20) ◽  
pp. 9433
Author(s):  
Noortje Aarden-van Delft ◽  
Manon Peeters ◽  
Liselore Snaphaan
Keyword(s):  
Experimental Design ◽  
Functional Activity ◽  
Functional Disability ◽  
Single Case ◽  
Community Dwelling ◽  
Term Care ◽  
Functional Activities ◽  
People With Dementia ◽  
Over Time ◽  
At Home

Functional disability in people with dementia is associated with placement in long-term care facilities, feelings of depression and caregiver burden. As there is currently no cure for dementia, more attention is needed for personalised support for people living with dementia at home. A promising non-pharmacological innovation for reducing problems in functional activities is biodynamic lighting. This type of artificial lighting resembles a normal daylight curve, including changes in light intensity and colour during the day. The aim of this pilot study with three participants is to explore the possible influence of biodynamic lighting on functional activities over time on people with dementia living at home. The study used an A-B-A-B withdrawal single-case experimental design. In the intervention phases, the participants were exposed to biodynamic lighting, while in the placebo phases, the participants were exposed to placebo light. Both light phases came from the same light system. Based on this study protocol, the quantitative effects of biodynamic light related with functional activity did not reach significance. However, the qualitative results of lighting seem promising with a stabilisation of functional activity experienced over time. Future research should examine the effects that light may have on functional activity more in-depth. This study offers recommendations for longitudinal research.

scholarly journals Persons with Dementia Living at Home or in Nursing Homes in Nine Swedish Urban or Rural Municipalities

Healthcare ◽  
2019 ◽  
Vol 7 (2) ◽  
pp. 80 ◽  
Author(s):  
Connie Lethin ◽  
Ingalill Rahm Hallberg ◽  
Emme-Li Vingare ◽  
Lottie Giertz
Keyword(s):  
Nursing Homes ◽  
Regression Model ◽  
Caregiver Burden ◽  
Rural Areas ◽  
Urban Areas ◽  
Neuropsychiatric Symptoms ◽  
Informal Caregivers ◽  
Multivariate Logistic Regression Analysis ◽  
Legal Guardianship ◽  
At Home

The methodology from the “RightTimePlaceCare” study of dementia care was tested locally in terms of relevance, acceptability and attrition. Comparing persons with dementia (PwDs) receiving home care (HC) with PwDs living in nursing homes (NHs), in urban versus rural areas, regarding their health conditions and informal caregiver burden was also done. Standardized measurements regarding sociodemographic, and physical and mental health was used. Questions related to legal guardianship were added. Interviews were conducted with PwDs and their caregivers in HC (n = 88) and in NHs (n = 58). Bivariate and multivariate logistic regression analysis was used. The attrition rate was higher in HC. In the bivariate regression model, for HC and NH, living at home was significantly associated with more severe neuropsychiatric symptoms (p ≤ 0.001) and being cared by a spouse (p = 0.008). In NH, the informal caregivers were significantly younger (p = 0.003) and living in rural areas (p = 0.007) and more often in paid work (p ≤ 0.001). In the multivariate regression model, informal caregivers were significantly younger (p = 0.007) when caring for a PwD in an NH and caregiver burden was significantly higher in HC and in urban areas (p = 0.043). Legal guardianship was very low. Professionals should acknowledge that PwDs in HC have more behavioural problems and caregivers in urban areas report higher caregiver burden.

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