[Digitalization and care relationships of people living alone in old age: a critical analysis of policy documents]. / Digitalisierung und Sorgebeziehungen von Alleinlebenden im Alter: eine kritische Analyse politischer Dokumente.

Digitalization is transforming social life and relationships. New cultural ideas of care, cooperation and reciprocity are emerging that can create challenges for older people. These are particularly poignant for older people living alone, who use digital devices less frequently and rely on support to manage the increasing number of digital tasks (appointments, bookings, financial matters). This article explores the relationship between digitalization and care relationships among older people living alone using a critical document analysis approach according to Bacchi. This approach makes it possible to look at the understanding behind the terms living alone, care relationships, and digitalization, each in relation to older people and in interaction as well as to render gaps visible. The analysis of laws and social policies as well as of political and civil society orientated documents leads to two key findings: Firstly, an individual responsibility to deal with needs arising from gaining access to and handling of digitalization is expected of older people and their social networks. This is striking as digitalization is presented as a means of dealing with the large-scale social challenges, such as demographic change and shortage of care staff. Secondly, the analysis shows that legal documents that set out the structure for policies do not focus on digitalization in later life. With older people not being a target group of policy of digitalization, fewer strategies are put into practice.

Project DECIDE, part II: decision-making places for people with dementia in Alzheimer's disease: supporting advance decision-making by improving person-environment fit.

BACKGROUND: The UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer's disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the 'spatial intervention study' of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. METHODS: People with a suspected or confirmed diagnosis of dementia in Alzheimer's disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed. DISCUSSION: The results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice. TRIAL REGISTRATION: DRKS00030799 .

Empowering patients with dementia to make legally effective decisions: a randomized controlled trial on enhancing capacity to consent to treatment.

Objectives: As our society ages, the incidence of age-related diseases increases and with it the number of medical treatments that require informed consent. Capacity to consent is often categorically questioned in persons with dementia (PwD) without appropriate assessment, depriving them of their right to autonomous decision-making. Supportive structures for PwD that comply with legal requirements are lacking. The EmMa project tried to overcome this shortcoming by developing and testing possible supportive measures to enhance the informed consent process for PwD.Method: These enhanced consent procedures (ECPs) were tested in a randomized controlled trial with 40 PwD. It was hypothesized that strengths-based ECPs could improve capacity to consent to a drug treatment in PwD as measured with a semi-structured interview.Results: Against the expectations, no effect of the ECPs on capacity to consent could be found, but the ECPs improved understanding of information in PwD.Conclusion: To empower PwD in clinical settings, however, all aspects of capacity to consent should be targeted with specific aids that are implemented carefully and selectively. More research on possible aids for ECPs is urgently needed in order to enable ethically and legally robust informed consent. In particular, effective ways to improve both reasoning and appreciation are yet to be found.

Project DECIDE, part 1: increasing the amount of valid advance directives in people with Alzheimer's disease by offering advance care planning-a prospective double-arm intervention study.

BACKGROUND: Everybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer's dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is 'Respecting Choices'®-an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study's aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD. METHOD: We intend to recruit at least N = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed. DISCUSSION: The results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD. Trial Registration DRKS, DRKS00026691, registered 15th of October 2021, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691.

Person-environment fit of environmental support provided during medical consultations with older patients.

As some cognitive functions decline in old age, the ability to decide about important life events such as medical treatment is endangered. Environmental support to improve the comprehension of health-related information is therefore necessary. With a small-scale explorative approach, the present survey study aimed at investigating person-environment fit (PE-fit) of support provided during medical consultations. This fit was calculated by assessing the match between aids provided by five medical practitioners during medical consultations and aids most appreciated by the geriatric patients (N = 88). The results showed that the largest discrepancies of used and appreciated aids could be found concerning the opportunity to discuss decisions with relatives, the possibility to take notes, the use of objects, pictures and a keyword list. Female patients indicated a lower PE-fit. These findings highlight discrepancies between the use of specific aids and the wishes of patients and call for thoughtful use of aids during consultations with geriatric patients.

Advancing health literacy measurement in old age.

Health literacy is described as a domain of competence across the life-span, gaining particular prominence in light of age-associated health restrictions. However, no specific measurement approach has been proposed for old age. The aim of this study is to augment the existing HLS-EU-Q16 scale (16 items) by items sensitive to age-specific aspects of health literacy to ensure validity and reliability for use in old age. In a first step, the HLS-EU-Q16 was administered in a sample of 463 individuals aged 72 - 92 years. Psychometric properties were evaluated using confirmatory factor analysis and item-response-theory item fit statistics. Scale reliability was found to be poor in this population segment. In a second step, age-specific items were developed based on qualitative in-depth interviews with older persons. In a third step, we tested if the additional set of age-specific items was able to enhance a valid and reliable measurement of health literacy in a second sample of older adults (N = 107, 49 - 91 years). With the inclusion of an eight-item add-on, it was possible to measure health literacy in old and very old age with both high validity and satisfying precision (reliability = 0.80). The study contributes to a population-specific measurement of health literacy.

How do dementia researchers view support tools for informed consent procedures of persons with dementia?

The study aimed to assess how dementia researchers view eight support tools that have been defined to enhance informed consent (IC) procedures for people with dementia (PwD). In an online survey, 19 dementia researchers from Germany and Portugal evaluated the tools in terms of 4 implementation criteria. Overall, they all had a very positive attitude towards the support tools, whereby the tools person-centered attitude of the researcher and elaborated plain language were the most highly rated of the eight tools. Our findings also indicated that familiar support tools were assessed more favorably than those that were previously unknown. Overall, the results of this study showed that the participating dementia researchers were open to the use of decision support measures in PwD and were willing to apply the support tools in practice.

Psychometric properties of the external Housing-Related Control Belief Questionnaire among people with Parkinson's disease.

BACKGROUND: Housing-related control beliefs are associated with aspects of health among older people in general. Research on Parkinson's disease (PD) focusing on perceptions of the home are rare and instruments capturing perceived aspects of home have seldom been used. AIMS: To evaluate psychometric properties of the external Housing-related Control Beliefs Questionnaire (HCQ) among people with PD. METHODS: The external HCQ were administrated to 245 participants with PD, (mean age = 69.9 years; mean PD duration = 9.7 years). External HCQ has 16-items, with five response options. The psychometric properties evaluated were data quality, structural validity (factor analysis), floor and ceiling effects, corrected item total correlations, internal consistency and construct validity (testing correlations with relevant constructs according to pre-defined hypotheses). RESULTS: Data quality was high. Structural validity showed a unidimensional construct with removal of two items. Homogeneity was questionable, but strengthened after the removal of the two items. For the 14-item version internal consistency was α = 0.78 and SEM 4.47. Corrected item total correlation ranged between 0.31 and 0.54 and no floor or ceiling effects. Significant correlations with relevant constructs supported the construct validity. CONCLUSIONS: Taken together, the psychometric results suggest a 14-item version of the external HCQ to be sufficiently reliable and valid for use in the PD population. The results pave the way for further studies, using the HCQ to analyse how perceptions of control of the home may be associated with health among people ageing with PD.

[Emotional robots in a nursing context : Empirical analysis of the present use and the effects of Paro and Pleo]. / Emotionale Roboter im Pflegekontext : Empirische Analyse des bisherigen Einsatzes und der Wirkungen von Paro und Pleo.

BACKGROUND: It has been questioned by researchers in robotics as well in the general public to what extent companion-type robots can support the elderly with the fulfillment of their psychological and social needs. Although these robots have already been used in care settings in Germany, research has referred little to this practical experience in order to analyze their impact and benefit. To start to close this gap, the current article reports on the current use of companion-type robots in care settings, on the effects reported by professional caregivers as well as on the role of psychosocial needs in the acceptance and use of companion-type robots by the elderly. MATERIAL AND METHODS: In the first study, 30 professional caregivers with experience in the use of the robot seal Paro in care settings were interviewed regarding Paro's application and the observed effects on their clients. In the second study, three case examples are presented from an interaction study in which vulnerable elderly persons had the robot dinosaur Pleo at their disposal for a maximum period of 15 days. RESULTS: Paro is used very flexibly in a variety of settings and with a broad range of user groups (study 1). The reported psychosocial effects were mainly positive but short term. The case examples (study 2) show that psychosocial needs can both foster or hinder robot acceptance and use. They also emphasize the important role of caregivers in the interaction between the elderly and emotional robots in the context of eldercare. CONCLUSION: The beneficial and ethical use of companion-type robots in care settings demands a high commitment on the part of the caregivers. Given this prerequisite, emotional robots can be a valuable therapeutic tool.

Assessing capacity to consent to treatment with cholinesterase inhibitors in dementia using a specific and standardized version of the MacArthur Competence Assessment Tool (MacCAT-T).

BACKGROUND: The use of assessment tools has been shown to improve the inter-rater reliability of capacity assessments. However, instrument-based capacity assessments of people with dementia face challenges. In dementia research, measuring capacity with instruments like the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) mostly employ hypothetical treatment vignettes that can overwhelm the abstraction capabilities of people with dementia and are thus not always suitable for this target group. The primary aim of this study was to provide a standardized real informed consent paradigm that enables the dementia-specific properties of capacity to consent to treatment in people with dementia to be identified in a real informed consent process that is both externally valid and ethically justifiable. METHODS: The sample consisted of 53 people with mild to moderate dementia and a group of 133 people without cognitive impairment. Rather than using a hypothetical treatment vignette, we used a standardized version of the MacCAT-T to assess capacity to consent to treatment with cholinesterase inhibitors in people with dementia. Inter-rater reliability, item statistics, and psychometric properties were also investigated. RESULTS: Intraclass correlations (ICCs) (0.951-0.990) indicated high inter-rater reliability of the standardized real informed consent paradigm. In the dementia group, performance on different items of the MacCAT-T varied. Most people with dementia were able to express a treatment choice, and were aware of the need to take a tablet. Further information on the course of the disorder and the benefits and risks of the treatment were less understood, as was comparative reasoning regarding treatment alternatives. CONCLUSION: The standardized real informed consent paradigm enabled us to detect dementia-specific characteristics of patients' capacity to consent to treatment with cholinesterase inhibitors. In order to determine suitable enhanced consent procedures for this treatment, we recommend the consideration of MacCAT-T results on an item level. People with dementia seem to understand only basic information. Our data indicate that one useful strategy to enhance capacity to consent is to reduce attention and memory demands as far as possible.

[Violence against the elderly in domestic care settings : Short profile of an interdisciplinary research project]. / Gewalt gegen alte Menschen in häuslicher Pflege : Kurzportrait eines interdisziplinären Forschungsprojekts.

Most elderly people wish to remain and be cared for in their own home. Approximately 1.38 million people in Germany are cared for without professional support. However, domestic care by relatives can be a risk factor for violence against the elderly. This research project deals with the issue from a legal and social sciences perspective. The aim of the project is to develop a regulatory framework providing aid-oriented prevention and intervention in the family care of vulnerable elderly people by public agencies and courts. Firstly, empirical data on the situation in family care will be analyzed; secondly, the existing legal framework will be examined. In a third step, recommendations for legislation and administration will be developed in collaboration with practitioners. Initial findings show that, although various support, advice, and training services exist, the situation at home is not always safe. There is a lack of legal regulation on the issue of abuse in the family care setting, especially compared with German legislation on child protection. Thus, the legal framework should reinforce the prevention of care problems by giving more efficient support to carers and permitting legal intervention in the case of abuse. However, at the same time, the proposed legislation should take into account the importance of the individual's right to self-determination.

Community Relocation in Very Old Age: Changes in Housing Accessibility.

OBJECTIVE: The objective of this study was to compare environmental barriers, housing accessibility, and usability before and after relocation of very old, single-living people in the community. It also examined whether accessibility improved after relocation compared with a simulated scenario in which participants would have remained in their former dwellings. METHOD: Data from the Swedish part of the longitudinal Enabling Autonomy, Participation, and Well-Being in Old Age: The Home Environment as a Determinant for Healthy Ageing database were analyzed with a before-and-after design (N = 29). Mean time from before to after data collection was 2.6 yr. RESULTS: The number of environmental barriers was significantly reduced after relocation, especially barriers at entrances and in bathrooms. In addition, usability was stable and accessibility improved compared with the simulated scenario of remaining in the former dwelling. CONCLUSION: Community-based moves to new dwellings may lead to fewer environmental barriers and stable levels of usability and accessibility. This relocation is a positive outcome, considering the expected functional decline in old age.

Person-Environment Exchange Processes in Transition into Dementia: A Scoping Review.

BACKGROUND AND OBJECTIVES: The important role that the environment plays in the lives of older people is widely acknowledged. To date, little is known about person-environment processes during the early stages of dementia. This scoping review aims to provide an overview of the processes involved during early dementia and the relationship to different dimensions of their life space. RESEARCH DESIGN AND METHODS: A scoping review was conducted according to the Johanna Briggs Institute Manual, which involved searching for research on early dementia and the environment across 3 databases. RESULTS: A total of 1,358 records were screened, with 284 sources included in the first categorization of the diverse relationships that exist between the environment and the person living with early dementia. Finally, 102 sources were selected that describe person-environment exchange processes of agency, belonging, or stress. People living with dementia actively shape, use, seek out, and avoid their environment as a reaction to both declining abilities and environmental barriers. Specifically, feelings of connectedness and familiarity are important. DISCUSSION AND IMPLICATIONS: Taking both an environmental gerontology perspective and a processual, that is, transition perspective broadens the understanding of the experience and behavior of people living with early dementia. They constantly interact with and shape their environment and desire a sense of belonging. This sense of belonging might be threatened by dementia but can be actively reinforced by people living with dementia. These person-environment processes and their dynamics over time should be further investigated. Especially, quantitative data and data on socioeconomic environments are lacking.

Moving in together in later life: Making spaces into places as a joint endeavor.

BACKGROUND AND OBJECTIVES: We focus on the linkages between relocation, new forms of partner cohabitation, and retirement. What are the patterns and trajectories of moving in with a partner in retirement? How do older adults experience different transitions, place attachment, and placemaking when they move in with a partner? RESEARCH DESIGN AND METHODS: In this qualitative study, 50 persons between 60 and 75 years old were interviewed in Sweden and Germany. For this paper, we focused on nine participants who experienced a relocation with a partner in retirement. Interviews were transcribed and analyzed using a strategy derived from social constructivist Grounded Theory and thematic analysis. RESULTS: Research participants described experiences of several relocations and cohabitation trajectories. In particular, we identified two patterns of relocating with a partner in retirement: moving into a new place with a partner and moving into a partner's pre-existing home, the latter proving more challenging for forming place attachment and for the couple relationship. Relocation experiences appeared to form a joint process in which relationships and retirement were renegotiated. DISCUSSION AND IMPLICATIONS: Using cross-cultural data, this novel study shows an unexpected diversity in housing and cohabitation trajectories among older adults. More research is needed to understand what "aging in the right place" with "the right person" really means and the role of life course trajectories and couple negotiations in such processes. Future research should focus on what comes before and after relocation rather than solely studying the decision-making process that leads up to a move.

Need for and challenges facing functional communication as outcome parameter in AD clinical trials.

This paper (1) highlights the relevance of functional communication as an outcome parameter in Alzheimer disease (AD) clinical trials; (2) identifies studies that have reported functional communication outcome measures in AD clinical trials; (3) critically reviews the scales of functional communication used in recent AD clinical trials by summarizing the sources of information, characteristics, and available psychometric data for these scales; and (4) evaluates whether these measures actually or partially assess functional communication. To provide direction for future research and generate suggestions to assist in the development of a valid and reliable functional communication scale for the needs of AD clinical trials, we have included not only functional communication scales, but also related concepts that give thought-provoking impulses for the development of a functional communication scale. As outcome measures for AD clinical trials, the 6 identified papers use 6 different scales, for functional communication and for related concepts. All of the scales appear to have questionable psychometric properties, but still provide a promising basis for the creation of a functional communication scale. We conclude with concrete suggestions on how to combine the advantages of the existing scales for future research aimed at developing a valid and reliable functional communication scale for the needs of AD clinical trials.

Aspects of housing and perceived health among ADL independent and ADL dependent groups of older people in three national samples.

AIMS: Good housing solutions are important for the ageing population in order to promote health and maintain functional ability. The objective of this study was to investigate whether and how objective and perceived aspects of housing were related to perceived health among ADL independent and ADL dependent groups of older, single-living people within three national samples. METHODS: The current study was based on national samples (German, n = 450; Latvian, n = 303; Swedish, n = 397) from the European ENABLE-AGE Project, using data on ADL dependence, perceived health, objective and perceived aspects of housing. Descriptive statistics, correlations and multivariate ordinal regression models were used to analyze the data. RESULTS: The participants in the ADL dependent groups generally were older, had more functional limitations and perceived their health as poorer compared to ADL independent groups. With regard to perceived housing, usability as well as meaning of home indicators was often lower in the ADL dependent groups, housing satisfaction was at the same level while housing-related external control beliefs were higher. The differences among the national samples were highly significant for both ADL groups, for all variables except number of outdoor environmental barriers in the ADL independent groups. The relations between perceived health on one hand and objective and perceived aspects of housing on the other show great diversities among the ADL groups and the national samples. CONCLUSIONS: The results serve to alert health care practitioners that it is important to draw attention to how older people perceive their housing situation and to the fact that different levels of functional independence demand different interventions.