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.

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.

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.

Digital (in)equalities and user emancipation: Examining the potential of Adorno's maxim of Mündigkeit for critical intergenerational learning.

The widespread use of mobile technologies has penetrated the lives of people across all age groups with the usage of smartphones and wearables appearing "natural" and without alternatives. The digitalisation of everyday life means that communication and negotiation of social and societal meanings are co-constructed by users and mobile technologies thereby blurring the boundary between on- and off-line as well as social and private spheres. At the same time, the global-market logic that has driven the extent and speed of this social transformation raises questions as to how individuals retain influence and agency over the digital technologies that have come to define both social and private spheres and that surround them at all times. Against this backdrop, this theoretical paper discusses the role of Adorno's maxim of emancipation toward autonomy (Mündigkeit) for education (Erziehung) and critical learning about and living with digital technologies. The paper suggests a way forward through intergenerational learning as a didactical method of enhancing emancipation among younger and older generations of "users" in their joint efforts of becoming critical agents in an age of digitally enhanced data markets.

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.

Perceived Housing in Relation to Retirement and Relocation: A Qualitative Interview Study among Older Adults.

As people age the home environment becomes increasingly important. Retirement commonly leads to spending more time in one's home, and relocating from your own home in older age could be associated with reduced health or wellbeing. The relationship between home and person is complex and perceived aspects of one's housing such as social, emotional and cognitive ties are considered important factors for health and wellbeing. However, little is known about how perceived aspects of the home change in relation to retirement and relocation. This paper used Situational Analysis to explore, via situational mapping, how community dwelling older adults (aged 60-75) perceived their housing situation in relation to retirement and relocation. The results suggest complex relations between relocation/retirement and perceived housing, and between different aspects of perceived housing. Furthermore, the results suggest that the relationship between life transitions and perceived housing can be seen as bi-directional, where different life transitions affect aspects of perceived housing, and that perceived housing affects (decisions for) relocation. The results suggest complex relations between retirement and relocation, as well as other life transitions, and perceived aspects of one's housing. It is important to consider these interactions to understand factors that affect health and wellbeing in older adults.

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.

Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture.

The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has been poorly explored for persons with dementia (PwD).This article describes the empirical development and implementation of support tools to enhance informed consent processes (so called enhanced consent procedures/ECP) for PwD on whether to undergo lumbar puncture. In the end of the process of pilot testing and further development of the tools, the following tools were defined: (1) Standardized Interview Structure, (2) Elaborated Plain Language, (3) Ambience and Room Design, (4) Keyword Lists, (5) Priority Cards, (6) Visualization, and (7) Simplified Written Informed Consent (Patient Information), as well as the general attitude (8) Person-Centered Attitude of the facilitator. As the development, implementation and evaluation of ECP tools is one objective of the transnational ENSURE project, we also include an overview of future empirical procedures. So far, our findings can serve as a selection of possibilities to support PwD in decision-making and help practitioners achieve an appropriate balance between the autonomy and protection of PwD in complex decision-making situation. Future studies should address the question if the proposed set of tools is effective to enhance informed consent processes in PwD.

Considering Situational Variety in Contextualized Aging Research - Opinion About Methodological Perspectives.

Due to the increasingly heterogeneous trajectories of aging, gerontology requires theoretical models and empirical methods that can meaningfully, reliably, and precisely describe, explain, and predict causes and effects within the aging process, considering particular contexts and situations. Human behavior occurs in contexts; nevertheless, situational changes are often neglected in context-based behavior research. This article follows the tradition of environmental gerontology research based on Lawton's Person-Environment-Interaction model (P-E model) and the theoretical developments of recent years. The authors discuss that, despite an explicit time component, current P-E models could be strengthened by focusing on detecting P-E interactions in various everyday situations. Enhancing Lawton's original formula via a situationally based component not only changes the theoretical perspectives on the interplay between person and environment but also demands new data collection approaches in empirical environmental research. Those approaches are discussed through the example of collecting mobile data with smartphones. Future research should include the situational dimension to investigate the complex nature of person environment interactions.

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.

Perceptions of the Neighborhood Built Environment for Walking Behavior in Older Adults Living in Close Proximity.

Past research documents a discordance between perceived and objectively assessed neighborhood environmental features on walking behavior. Therefore, we examined differences in the perception of the same neighborhood built environment. Participants were grouped if they lived 400 m or closer to each other. The perception of the pedestrian infrastructure, neighborhood aesthetics, safety from crime, and safety from traffic was derived from a telephone survey from two North American metropolitan areas; 173 individuals were clustered into 42 groups. Older adults who walked for transport in their neighborhood experienced the same neighborhood as more walkable (ß = .19; p = .011) with better pedestrian infrastructure (ß = .16; p = .037). Older adults with physical limitations experienced the same neighborhood as less safe from crime (ß = -.17; p = .030) and traffic (ß = -.20; p = .009). The study supports the notion that individual behavior and physical restrictions alter the environment's perception and explains part of the discordance between objective and subjective assessment of the neighborhood environment.

The meaning of home questionnaire revisited: Psychometric analyses among people with Parkinson's disease reveals new dimensions.

BACKGROUND: Research addressing perceptions of housing in people with Parkinson's disease (PD) is rare, and existing instruments capturing perceived aspects of housing are rarely used. Perceived housing comprises of several domains and is associated with health in general older populations. One such domain is meaning of home, captured by the Meaning of Home Questionnaire (MOH). The aim of this study was to evaluate psychometric properties of the MOH among people with PD. MATERIALS AND METHODS: The MOH was administrated to 245 participants with PD (mean age = 69.9 years; mean PD duration = 9.7 years). The instrument consisted of four sub-scales with 28 items, each with 11 response options (strongly disagree = 0; strongly agree = 10). We evaluated data quality, structural validity (factor analysis), construct validity (i.e., testing correlations with relevant constructs according to pre-defined hypotheses), corrected item total correlations, floor and ceiling effects and internal consistency. RESULTS: The data quality was high (0-1.2% missing data). The exploratory factor analysis suggested removal of five items and revealed three new factors; "My home is my castle", "My home is my prison" and "My home is my social hub". The 23-item MOH showed statistically significant correlations with life satisfaction, usability and ADL dependence, while not correlated with number of environmental barriers. These findings were largely as hypothesised, thus supporting construct validity (both convergent and discriminant). The corrected item total correlations were >0.3 for all items and the internal consistency was >0.70 for all sub-scales. No floor or ceiling effects were reported except for the sub-scale "My home is my castle" (ceiling effect = 15.6%). CONCLUSIONS: The 23-item MOH version with three new sub-scales is sufficiently reliable and valid for use in PD populations. This paves the way for further research of meaning of home among people with PD, using the 23-item MOH version.

Coping Styles among People with Parkinson's Disease: A Three-Year Follow-Up Study.

People with Parkinson's disease (PD) experience a gradual loss of functional abilities that affects all facets of their daily life. There is a lack of longitudinal studies on coping styles in relation to the disease progression among people with PD. The aim of this study was to explore how coping styles in PD evolve over a 3-year period. Data from the longitudinal project "Home and Health in People Ageing with PD" was utilized (N = 158), including baseline and 3-year follow-up assessments. Coping was captured by ratings of 13 different coping styles. A factor analysis was conducted to analyse patterns of coping styles. Stability and change were analysed for each of the 13 styles with respect to the course of the disease. The factor analysis revealed four coping patterns: pessimistic, optimistic, persistent and support-seeking. The stability of each coping style over time ranged from 75.3% to 90.5%. Those who experienced a worsening of the disease were most inclined to change their coping style (p = 0.006). The results suggest that even when facing severe challenges due to PD in daily life, coping styles remain relatively stable over time. However, a worsening in PD severity appeared to trigger a certain re-evaluation of coping styles.

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.