Intersectionality and its relevance for research in dementia care of people with a migration background.

BACKGROUND: Despite the care and support needs of migrants affected by dementia differing from the population of the country where they live now, most European countries do not provide specific strategies to address migration in their national dementia plans. The concept of intersectionality provides an innovative approach to dementia care perspectives and methodologies. OBJECTIVE: The aim is to define intersectionality and to provide examples of applying the concept to dementia care research, focusing on people with a migration background. METHODS: This article was conceptualized and discussed during virtual INTERDEM taskforce meetings in 2020/2021, while discussing identified literature on intersectionality, migration, and dementia care research. RESULTS: Using an intersectionality framework allows understanding of a person's lived experience by considering the dimensionality, co-occurrence and interlocking of factors (e.g., sex/gender, socioeconomic status, ethnicity, migration status, geographic location/place). CONCLUSION: Intersectionality can be applied as a conceptual and methodological approach to identify and address gaps in perspectives and in (dementia care) research to overcome the threat of ignorance, exclusion and discrimination.

Quality of life in persons with dementia using regional dementia care network services in Germany: a one-year follow-up study.

BACKGROUND: The majority of individuals with dementia live in the community; thus, regional dementia care networks are becoming increasingly more important for the provision of care. To date, four different types of dementia care networks have been identified in Germany (stakeholder, organisation, hybrid, mission); however, the effect on the quality of life of persons with dementia using such network services has not yet been examined. Moreover, the possible differences in the effect on the quality of life among the four types of dementia care networks have not been investigated. Therefore, the aim of the present study was to describe the changes over time in the quality of life of persons with dementia, assessing the association with the different types of dementia care networks. METHODS: Within the DemNet-D study, face-to-face interviews with persons with dementia and their primary caregivers were conducted to collect data of typical outcome parameters, such as quality of life (Quality of Life Alzheimers Disease: QoL-AD), sociodemographic data, social index (Scheuch-Winkler), depression (Geriatric Depression Scale: GDS), challenging behaviour (Cohen-Mansfield Agitation Inventory: CMAI), capacities of daily living (Instrumental Activity of Daily Living: IADL), impairment due to dementia (FAST), and caregiver burden. In addition to these parameters, the differences in quality of life scores among the four types of dementia care networks were analysed using multi-level analysis. RESULTS: In total, 407 persons with dementia (79.1 years; 60.1% female) and their caregivers were included in the analysis. Over 75% of the persons with dementia showed moderate to (very) severe impairments of dementia and at least one challenging behaviour. At baseline, 60.6% had a low social index. Quality of life was stable over one-year on a level slightly above average (baseline 29.1; follow-up 28.7). Multi-level analyses (p <  0.001; R2 = 0.183) show that persons with dementia with higher QoL-AD scores at baseline were associated with a decline at follow-up. No significant differences among the types of dementia care networks were found. CONCLUSION: Users of dementia care network services showed a stable QoL-AD score over time at a level slightly above average, indicating no decrease or worsening over time as expected. Therefore, dementia care network services can be considered as a beneficial model of care in terms of the quality of life of persons with dementia, regardless of their special organisational type.

Regional dementia care networks in Germany: changes in caregiver burden at one-year follow-up and associated factors.

BACKGROUND: Recently, regional dementia care networks (DCNs) have been established in Germany to provide timely support for persons with dementia (PwDs) and their families. There is a lack of research in this setting. This study was conducted to describe the burden experienced by informal caregivers over the course of one year when utilizing a DCN and the factors affecting potential changes in caregiver burden during that time. METHODS: The study was part of the DemNet-D project, a multi-center observational study of DCNs in Germany. Standardized questionnaires were administered during face-to-face interviews at baseline and at a one-year follow-up with PwDs and their informal caregivers who used a DCN. Based on qualitative data, four DCN governance types were identified and used in a multivariate analysis of burden categories. RESULTS: A total of 389 PwD-informal caregiver dyads completed the follow-up assessment. At follow-up, the dyads reported significantly lower scores for burden in relation to practical care tasks, conflicts of need, and role conflicts. This change was associated with the PwD-caregiver relationship, the caregiver's gender and health status, and the PwD's socio-economic status. The governance structure of the DCNs was associated with change in one of the four burden categories. CONCLUSIONS: Our data provide the first indications that different governance structures of DCNs seem to be similarly well suited to support network users and might contribute to reducing caregiver burden. However, further studies set in DCNs examining factors that mediate changes in burden are needed to draw strong conclusions regarding the effectiveness of DCNs. Gender differences and the PwD-caregiver relationship should be considered by DCN stakeholders when developing support structures.

Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline.

OBJECTIVES: This paper aimed to describe the burden experienced by informal caregivers supporting a person with dementia (PwD) who lives at home and utilizes a dementia care network (DCN), to investigate the factors that are associated with caregiver burden, and to identify possible differences in caregiver burden among different types of DCNs. METHOD: This study was part of a multi-center, interdisciplinary evaluation of DCNs in Germany (DemNet-D). Cross-sectional data were collected in face-to-face interviews with people with dementia (PwDs) and their caregivers, and 13 DCNs were represented. Standardized questionnaires were used to assess caregiver burden, challenging PwD behaviors, functional competence and caregiver health status. Based on qualitative data, four DCN governance types were used in a multivariate analysis of burden categories. RESULTS: There were 560 PwD-caregiver dyads enrolled in the study. Informal caregivers (n = 536) reported a low-to-moderate burden associated with PwD characteristics (instrumental activities of daily living, challenging behaviors) and caregiver characteristics (gender) as well as the relationship between the caregivers and PwDs. Women felt more burdened but also showed higher levels of personal development. No differences were observed among the different DCN governance types. CONCLUSIONS: DCNs might contribute toward moderate to low caregiver burden. Indicators of positive caregiving aspects can be used by DCNs to advance support structures for informal caregivers drawing upon interventions already established for other community settings. Particular interest should be paid to female and spousal caregivers who might be in in need of greater and/or different kinds of support.

[Regional Dementia Care Networks in Germany--results from the DemNet-D-Study regarding the quality of life of their users]. / Regionale Demenznetzwerke in Deutschland. Ergebnisse der DemNet-D-Studie zur Lebensqualität der Nutzer(innen).

BACKGROUND: Regional dementia care networks become more and more important in the care for community-dwelling persons with dementia (PwD). However, the quality of life of PwD, served by dementia care networks, has not been investigated yet. It also remains unclear if there are differences between urban and rural dementia care networks. This study therefore aims at investigating the quality of life of PwD using this care model, also regarding possible regional differences. METHODS: Within the DemNet-D-Study, PwD and their primary caregivers were interviewed using typical outcome parameters (quality of life: QoL-AD, depression: GDS, challenging behaviour: CMAI, capacities of daily living: IADL, caregiver burden: BIZA-D). In addition to these parameters, regional differences were analysed using multi-level-analysis. RESULTS: In total, 560 PwD (79.7 years; 57.0 % female) and their caregivers participated in the study. Both self- and proxy-rated quality of life is on a moderate level. The analysis shows a sufficient explanation of the quality of life. (self: p<0.001, R2=0.493; proxy: p<0.001, R2=0.406). Higher quality of life was found for PwD living together with their care givers and for those PwD with higher capacities of daily living. Regional (urban vs. rural) differences could not be found. CONCLUSION: The quality of life of community-dwelling PwD using regional dementia care networks is comparable to those in other studies of outpatient dementia care. Further investigation should be carried out regarding different types of dementia care networks.

Can technology impact loneliness in dementia? A scoping review on the role of assistive technologies in delivering psychosocial interventions in long-term care.

PURPOSE: We aimed to identify assistive technologies that are promising for addressing loneliness in people living with dementia in long-term care. MATERIALS AND METHODS: A scoping review was conducted. EBSCO, PubMed, Cochrane Library, and ProQuest were searched from 2000 to 2020. The included studies were selected by three independent researchers and summarised, compared, and categorized according to technology type. Publications were eligible for inclusion when they reported on psychosocial interventions aiming to reduce loneliness and/or social isolation in people with dementia in long-term care settings. RESULTS: Twenty-four papers were included (20 original research papers and four reviews). Most studies were conducted in Australia and Europe. The studies aimed to investigate two different types of assistive technology: social robots, and multimedia computer systems. Most studies focussed on behaviour, engagement, and mood as primary outcomes. Only one study directly aimed to alleviate loneliness. CONCLUSIONS: Even though only one study addressed loneliness directly, it became clear that assistive technologies used to apply psychosocial interventions have the potential to impact loneliness in people with dementia in long-term care. However, it remains unclear why loneliness was not included as an outcome and how loneliness could become a key outcome in evaluating assistive technologies.IMPLICATIONS FOR REHABILITATIONLoneliness among older adults is associated with health risks, such as the development of dementia, depression, and increased mortality.Ambient Assisted Living (AAL) technologies have been studied to address loneliness for older adults; however people with dementia are often excluded from such studies.This diverse group of technologies is shown to have a promising impact on outcomes, such as social engagement, quality of life, and mood, but loneliness was studied less often.More research is needed to discover the potential of assistive technologies for people with dementia living in long-term care.

Implementing Active Assisted Living Technology in the Long-term Care of People Living With Dementia to Address Loneliness: European Survey.

BACKGROUND: In the lives of people with dementia, loneliness is an important issue with psychological and physical consequences. Active assisted living (AAL) technology has been gaining visibility in the care of persons living with dementia, including addressing loneliness. However, to the best of our knowledge, there is a lack of evidence concerning the factors influencing the implementation of AAL technology within the context of dementia, loneliness, and long-term care (LTC). OBJECTIVE: We aimed to identify the familiarity with AAL technology that is promising for addressing loneliness in persons living with dementia in LTC in Europe and the factors influencing AAL technology implementation. METHODS: A web-based survey was developed based on findings from our previous literature review. The Consolidated Framework for Implementation Research guided the development and analysis of the survey. Participants included 24 representatives of Alzheimer Europe member associations from 15 European countries. The data were analyzed using basic statistical methods (descriptive statistics). RESULTS: The baby seal robot Paro was reported to be the most familiar AAL technology by 19 of 24 participants addressing loneliness in people with dementia living in LTC. Participants from Norway (n=2) reported familiarity with 14 AAL technologies, and participants from Serbia (n=1) reported zero familiarity. It seems that countries that invest less in LTC facilities are familiar with fewer AAL technologies. At the same time, these countries report a more positive attitude toward AAL technology, express a higher need for it, and see more advantages than disadvantages than those countries that invest more in LTC. However, a country's investment in LTC facilities does not seem to be linked to other implementation aspects such as costs, planning, and the impact of infrastructure. CONCLUSIONS: Implementation of AAL technology to address loneliness in dementia seems to be linked to familiarity with the technology in a country as well as national investment in LTC facilities. This survey confirms the literature on higher investment countries' critical stance in regard to AAL technology implementation to address loneliness in persons living with dementia living in LTC. Further research is needed to clarify the potential reasons why familiarity with more AAL technology does not seem to be directly linked with acceptance, positive attitude, or satisfaction with AAL technology addressing loneliness in persons living with dementia.

Theoretical approaches to process evaluations of complex interventions in health care: a systematic scoping review protocol.

BACKGROUND: Complex interventions in health care are characterized by multiple interacting components as well as by numerous nonlinear interactions with the social systems within which they are being implemented. The process of developing, evaluating and implementing complex interventions is therefore challenging. Established guidance such as the MRC (Medical Research Council) framework for developing and evaluating complex interventions refers to process evaluations as an integral part of the development of complex evidence-based interventions. Even though the need for process evaluations is recognized, the realization of such approaches is challenging because methodological instruction is sparse, and the phenomenon of interest is complex. A number of theoretical approaches indicating how to conduct process evaluations of complex interventions in health care exist, but a systematic and comprehensive overview of these is missing. Thus, the objective of the systematic scoping review described herein is to provide an overview and analysis of theoretical approaches suitable for the planning and conducting of process evaluations. METHODS: The design and conduct of this review will follow the procedures of a systematic scoping review. The search strategy will be developed following the BeHEMoTh (Behaviour of interest; Health context; Exclusions; Models or Theories) template which has been conceptualized for structured reviews of theory. The systematic search of the MEDLINE (via PubMed), CINAHL (via EBSCO) and PsycInfo (via EBSCO) electronic databases will be complemented by "hand searching" techniques. Study selection, data extraction, and data analysis will be performed by tandems of two researchers independently of each other. Divergent decisions and judgements between the two researchers will be discussed by the whole review team. DISCUSSION: The findings from this scoping review will provide an overview and comparison of theoretical approaches suitable for process evaluations of complex interventions in health care. The review results will support researchers in choosing the theoretical approach that best fits the respective focus of their process evaluation study. SYSTEMATIC REVIEW REGISTRATION: This study has been registered with PROSPERO (International Prospective Register of Systematic Reviews) under registration number CRD42020211732 .

Care Arrangements in Dementia Care Networks: Findings From the DemNet-D Study Baseline and 1-Year Follow-Up.

OBJECTIVE: This study was conducted to describe care arrangements for persons with dementia (PwDs) who are living at home with the support of a dementia care network (DCN). METHOD: Data on the utilization of formal and informal support were collected in face-to-face interviews at baseline and 1-year follow-up with PwDs and caregivers receiving support from 1 of 13 DCNs. RESULTS: Men with dementia were supported by twice as many informal caregivers as women (2 vs. 1, respectively, p < .001). Regional differences were found in home-care nursing services, social care groups, companion home services, and day care. The care situations were considered stable by most caregivers. DISCUSSION: DCNs appear to contribute to a high degree of perceived stability in care situations. Future research should investigate possible gender differences in informal support networks. DCNs should continue their efforts in making low-threshold services in rural areas available and accessible.

Key Aspects of a Sustainable Health Insurance System in Germany.

BACKGROUND: The main goals of health-care systems are to improve the health of the population they serve, respond to people's legitimate expectations, and offer fair financing. As a result, the health system in Germany is subject to continuous adaption as well as public and political discussions about its design. OBJECTIVE: This paper analyzes the key challenges for the German health-care system and the underlying factors driving these challenges. We aim to identify possible solutions to put the German health-care system in a better position to face these challenges. METHODS: We utilize a broad array of methods to answer these questions, including a review of the published and grey literature on health-care planning in Germany, semi-structured interviews with stakeholders in the system, and an online questionnaire. RESULTS: We find that the most urgent (and manageable) aspects that merit attention are holistic hospital planning, initiatives to increase (administrative) innovation in the health-care system, incentives to increase prevention, and approaches to increase analytical quality assurance. CONCLUSION: We found that hospital planning, innovation, quality control, and prevention, are considered to be the topics most in need of attention in the German health system.

Nonpharmacological therapies and provision of aids in outpatient dementia networks in Germany: utilization rates and associated factors.

BACKGROUND: Nonpharmacological therapies and the provision of aids are described to be supportive in the treatment of persons with dementia (PWDs). These aim to maintain individuals' participation in daily activities as long as possible, to slow the progression of their disease, and to support their independent living at home. However, there is a lack of knowledge about the utilization of therapies and aids among community-dwelling PWDs. OBJECTIVE: The aims of the study were a) to describe the utilization of nonpharmacological therapies and aids among community-dwelling PWDs and b) to analyze the factors associated with utilization. METHOD: As part of a cross-sectional study of n=560 caregivers of PWDs in dementia networks throughout Germany, we assessed sociodemographics, clinical variables, and the utilization of nonpharmacological therapies (physiotherapy [PT], occupational therapy [OT]), and aids (sensory, mobility, and others), using face-to-face interviews and questionnaires. RESULTS: Approximately every fourth PWD received PT and every seventh PWD received OT. Sensory aids were utilized by 91.1%, personal hygiene aids by 77.2%, mobility aids by 58.6%, and medical aids by 57.7% of the sample. Regression analysis revealed that the utilization of PT and medical aids was associated with comorbidities (odds ratio [OR] 1.17 and OR 1.27, respectively) and that the utilization of OT and sensory aids was associated with age (OR 1.06 and OR 0.95, respectively). CONCLUSION: The utilization of nonpharmacological therapies and aids among community-dwelling people served by dementia networks is more frequent than that reported for people in other settings. This result indicates that PWDs in integrated care models such as dementia networks receive better health care.