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.

Self-reported Changes in Use of and Attitudes Toward ICT in Three Generations in Sweden During the Early Phase of the COVID-19 Pandemic.

COVID-19 has affected the daily activities of people worldwide. Recommendations introduced to reduce the spread of the virus led to increased use of Information and Communication Technologies (ICT) to meet everyday needs. Such rapid digitalization had not been seen previously and not been possible to study before. Hence, this study aimed to identify and describe self-reported changes in usage of and attitudes toward ICT among three generations in Sweden during the early phase of the COVID-19 pandemic. Additionally, it aimed to identify whether and how belonging to a specific generation was related to these changes. A national cross-sectional survey was conducted in June 2020 with a final sample of N = 3,000, stratified into three generations (30-39, 50-59, and 70-79-year-old persons). A majority reported using digital technology more often than before the pandemic. Compared to the youngest generation, the oldest and middle-aged generations reported that they used digital technology more often than before the pandemic. Our results show which technologies were considered essential for different generations during the early phase of the pandemic. This information can be used to guide policy makers based on knowledge concerning the needs and demands for digital technologies in everyday life among people of different ages.

Translation and Psychometric Evaluation of the University of Jyvaskyla Active Aging Scale (UJACAS) for Use in Sweden.

The objectives were to translate the University of Jyvaskyla Active Aging Scale (UJACAS) to Swedish, to establish semantic equivalence and evaluate psychometric properties for use among persons 55 years and older in Sweden. The UJACAS contains 17 items to be self-assessed regarding goals, abilities, opportunity, and activity. Psychometric properties content validity, data quality including floor and ceiling effects, test-retest reliability, internal consistency, and construct validity were evaluated with different samples in three phases, using state-of-the-art statistics. After translating and establishing semantic equivalence, content validity was assessed as high. With ICC = 0.88 (95% CI 0.80-0.93) test-retest reliability was moderate. Internal consistency was high (Cronbach alpha = 0.84-0.91), and 84% of the questions reached the cut-off value of 0.3 for corrected item-total correlation. Construct validity hypotheses were confirmed. Results indicate that the UJACAS is reliable and valid for use among persons 55 and older in Sweden.

Ageing in the right place-usability of a web-based housing counselling service.

INTRODUCTION: Residential reasoning is a complex process that includes decisions on whether to age in place or to relocate. Ageing in the Right Place (ARP), a web-based housing counselling service was created to support older adults in this process. The study's aim was to evaluate the usability of the ARP as regards content, design, specific functions, and self-administration as a mode of delivery and to lay the ground for further optimisation. MATERIAL AND METHOD: Nine women and five men (aged 66-82) completed a series of tasks using the ARP. Qualitative and quantitative usability data were collected through online interviews. Data were analysed using qualitative content analysis and descriptive statistics. RESULTS: Experiences of the specific functions, content, and design of the ARP were described as mainly positive. Additions to the content and optimisation to assist in the general navigation of the website were suggested. The participants disagreed regarding the preferred mode of delivery, which indicates a need for selectable options. A system usability scale median score of 84 indicated acceptable usability. CONCLUSION: The ARP seems to have acceptable usability, which paves the way for further evaluation. SIGNIFICANCE: By enabling residential reasoning, older adults are supported to make proactive choices based on informed decisions.

Synthesizing implications of a collaborative project on socially sustainable housing policies for the aging population.

OBJECTIVE: Based on findings from four transdisciplinary original research studies on housing issues for the aging population, whereof three had a particular focus on marginalized groups, we report a co-produced synthesis of implications from a collaborative research project on socially sustainable housing policies. Researchers and non-academic partners in the ongoing Thematic Collaboration Initiative Social Rights and Housing for the Aging Population at Lund University collaborated in co-creative activities aiming at policy recommendations. RESULTS: Seven types of implications (i.e., themes) that represent macro and meso level approaches with potential to generate impact on social rights and housing for the aging population were identified. The content of legislation and regulations, financial institution strategies, and housing and neighbourhood development exemplify macro level implications. The three themes education and training, communicating with a diversity of stakeholders, and communicating with the public all relate to an overall need for integrated knowledge translation. The theme involving older adults as a resource delivered insight into underutilized capacities of the diverse target group. As the quest for integrated knowledge translation is growing stronger, this research note contributes to development of co-production approaches to synthesize implications of transdisciplinary collaboration, connecting research, practice and policy on societal challenges that ay population aging.

"Why involve older people in research?" Revisiting Alan Walker's earlier editorial based on recent experiences from the UserAge research programme.

Posed 16 years ago in a much-cited editorial by gerontologist, Alan Walker, "Why involve older people in research?" is a question that has since inspired researchers in many countries and from diverse disciplines. In Sweden, researchers and older people have been collaborating in the 6-year UserAge research programme, focusing on user involvement in research on ageing and health, UserAge aims at contributing to an in-depth understanding of the challenges and benefits of user involvement in different phases of the research process. Approaching programme completion, the authors take the opportunity to dwell upon current reasons for and modes of user involvement in ageing research in light of the argument originally put forward by Alan Walker back in 2007.

Homeownership While Aging-How Health and Economic Factors Incentivize or Disincentivize Relocation: Protocol for a Mixed Methods Project.

BACKGROUND: Many factors influence housing choices among older adults, but far from all have been identified. There is little systematic analysis that has included economic factors and virtually no knowledge about the interplay among perceived costs of moving, health status, and the mobility rate of older homeowners. It is currently unclear whether economic factors influence older adults' willingness to move, and the effects of economic policies on their actual behavior in the housing market are largely unknown. OBJECTIVE: The overarching objective of the AGE-HERE project is to develop knowledge of the relationship between health and economic factors that incentivize or disincentivize relocation during the process of aging. METHODS: This project uses a mixed methods convergent design across 4 studies. The initial quantitative register study and subsequent qualitative focus group study will nurture the evidence base and the development of a national survey. The final study will synthesize and integrate the results of the entire project. RESULTS: Ethical approval for the register study (DNR 2022-04626-01) and focus group study (DNR 2023-01887-01) has been obtained. As of July 2023, data analyses (register study) and data collection (focus group study) are currently being conducted. The first paper based on the register data is expected to be submitted after the summer of 2023. Three meetings have been held with the nonacademic reference group. The qualitative data will be analyzed in the autumn. Based on the results of these studies, a survey questionnaire will be developed and distributed nationally during the spring of 2024, followed by data analyses in the autumn. Finally, the results from all studies will be synthesized in 2025. CONCLUSIONS: Results from AGE-HERE will add to the knowledge base for research on aging, health, and housing and can play a critical role in guiding future policy decisions aiming to balance the housing market. Such developments may lower related social costs and support older adults to maintain active, independent, and healthy lives. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47568.

Time to workforce exit after a Parkinson's disease diagnosis.

The impact of Parkinson's disease (PD) on workforce participation has received little attention even though demographic, lifestyle, and political changes together will result in an increased burden of PD on the working-age population. In this study, we investigate workforce survival after a PD diagnosis, as well as what demographic factors that are associated with workforce survival. As an exploratory outcome, we investigate workforce survival in persons with and without device-aided treatment (DAT). This is a nested case-cohort study based on Swedish national data from 2001-2016. Controls were matched on year of birth, sex, and municipality of residence. The used registers contain data on demographics, social insurance, in- and outpatient visits, filled drug prescriptions, and cause of death on the person-level. A total of 4781 persons with PD and 23,905 controls were included. The median survival until all-cause workforce exit was 43 months among persons that were workforce-active at the time of PD diagnosis, compared to 66 months in non-PD controls. Being female, ≥50 years old at diagnosis, or having a lower education were contributing factors to health-related workforce exit. Persons receiving DAT during follow-up exhibited shorter workforce survival than controls. However, this needs further investigation, particularly as patients have generally already left the workforce at the time for start of DAT. It is evident that PD has grave negative effects on workforce participation. Thus, supportive measures need to start at an early stage after diagnosis, and the development of new interventions is urgently needed.

Support Needs Among Older Tenants Living in Public Housing in Sweden: Perspectives of Janitors and Maintenance Staff.

Neighborhood support can improve aging in place for older adults, but research on the role of public housing staff in supporting older tenants is lacking. Twenty-nine participants (janitors, n = 11; maintenance staff, n = 18) collected data about critical situations among older tenants residing in apartments in Sweden. Modifying the Critical Incident Technique (CIT) and applying a mixed-methods design, quantitative and qualitative data were collected and analyzed with descriptive statistics and thematic analysis, integrated through narrative. We found that older tenants asked staff for help with daily tasks. The staff identified CI management dilemmas in meeting older tenants' support needs while following the housing company's regulations, maintaining professional responsibilities, respecting individual work attitudes and preferences, and experienced a lack of competencies in some situations. Staff members were responsive to offering support in simple, practical, and emotional situations and in addressing matters they perceived as deficits in social and health services.

Optimising conditions and environments for digital participation in later life: A macro-meso-micro framework of partnership-building.

The ongoing digitalisation of societies, exacerbated by the COVID-19 pandemic, has led to increased efforts to ensure the digital inclusion of older adults. Digital inclusion strategies throughout the COVID-19 pandemic predominantly focused on increasing access and basic digital literacy of Information and Communication Technologies (ICTs) for all members of society. Older adults, who are more likely to experience digital exclusion, are amongst the target groups of digital inclusion strategies. We propose that beyond digital inclusion, there is a need to focus on digital participation and optimise opportunities for everyone to participate in communities and society in post-pandemic times. Creative digital skills are the foundation of digital participation and can lead to a variety of contributions. Digital participation offers conditions that support agency and active contributions in a digitalised society. Taking macro-, meso-, and micro-level enablers of digital participation in later life into account, we argue for the establishment and implementation of multi-layered and multisectoral partnerships that address environmental factors (including social and physical dimensions) of digital participation and create opportunities for diverse, meaningful and fulfilling engagement with ICTs in later life. The partnership approach can be used in designing and implementing digital participation programmes and should be further evaluated against the needs and lived experiences of older individuals. Foresighted research is needed to investigate key factors of effective partnerships for optimising environments for digital participation in later life.

The Lived Experience of Caregiving and Perception of Service Provision among Family-Caregivers of People with Late-Stage Parkinson's: A Qualitative Study.

Background: The complex nature of late-stage Parkinson's requires multiagency support and leads to an increased burden on family members who assume a multiplicity of responsibilities. The aim of this study is to further understand the lived experiences of family-caregivers and their perception of, and satisfaction with, service provision. Methods: This qualitative substudy was a part of the European multicentre Care of Late-Stage Parkinsonism (CLaSP) project. Purposive sampling resulted in a sample of eleven family-caregivers of people with late-stage Parkinson's, who were interviewed using semistructured open-ended questions. Thematic analysis followed. Findings. Three overarching themes were developed from the data: ensuring continuous support is vital to providing care at home, perceiving unmet service provision needs, and advocating and co-ordinating all aspects of care take their toll. These themes include not only experience of services that caregivers find supportive in order to deliver care but also of disjointed care between multiple agencies, a perceived lack of Parkinson's expertise, and there was a lack of anticipatory future planning. The constancy and scope of the family-caregiver role is described, including the need to project manage multiple aspects of care with multiple agencies, to be an advocate, and to assume new roles such as managing finances. Multiple losses were reported, which in part was mitigated by gaining expertise through information and support from professionals and organised and informal support. Conclusion: The intricacies and consequences of the family-caregivers' role and their experience of service provision indicate the need to acknowledge and consider their role and needs, fully involve them in consultations and provide information and joined-up support to improve their well-being, and ensure their continuous significant contribution to the ongoing care of the person with Parkinson's.

Environmental barriers and housing accessibility problems for people with Parkinson's disease: A three-year perspective.

BACKGROUND: Although housing accessibility is associated with important health outcomes in other populations, few studies have addressed this in a Parkinson's disease population. AIM: To determine the most severe environmental barriers in terms of housing accessibility problems and how these evolved over 3 years among people with Parkinson's disease. MATERIAL AND METHODS: 138 participants were included (men = 67%; mean age = 68 years). The most severe environmental barrier were identified by the Housing Enabler instrument and ranked in descending order. The paired t-test was used to analyse changes in accessibility problems over time. RESULTS: The top 10 barriers remained largely unchanged over 3 years, but with notable changes in order and magnitude. 'No grab bar in hygiene area' and 'Stairs only route' were top-ranked in generating accessibility problems at baseline but decreased significantly (p = 0.041; p = 0.002) at follow-up. 'Difficulties to reach refuse bin' was top-ranked at follow-up, with a significant increase (p < 0.001) of related accessibility problems. CONCLUSIONS AND SIGNIFICANCE: The new knowledge about how accessibility problems evolve over time could be used by occupational therapists to recommend more effective housing adaptations taking the progressive nature of Parkinson's disease into account. On societal level, the results could be used to address accessibility problems systematically.

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.

User involvement in ageing and health research: a survey of researchers' and older adults' perspectives.

BACKGROUND: User involvement in research has rapidly increased and is often a precondition to obtain research funding. Benefits such as effectiveness and increased relevance of research are described in the literature, but the evidence to support this is weak. Little is known about ageing and health researchers' experiences and perspectives towards user involvement in research, and their attitudes towards user involvement compared to the attitudes of the users involved are largely unknown. To examine researchers' experiences and perspectives of user involvement in research on ageing and health, and to compare their attitudes towards user involvement to the attitudes of older adults in the general population. METHODS: A panel study survey was used to elicit responses from researchers in ageing and health as well as from older adults (aged 60 years and older). The researcher sample (N = 64) completed the survey online, while the older adult sample (N = 881) could choose among three different options to complete the survey (online, paper format, telephone). A professional survey company collected the data. Descriptive statistics, exploratory comparisons and descriptive qualitative content analysis were used to analyse the data. RESULTS: More than half (58%) of the researchers had previous experience of involving different categories of users in a wide range of research activities. The most frequent motivation for involving users was to ensure that the research produced is relevant to the target population. A majority (86%) reported benefits, and more than half (59%) described challenges. Differences in attitudes were found between researchers and older adults in the general population. CONCLUSIONS: Ageing and health researchers involve users in their research to improve quality and ensure relevance, but there is no consensus among them whether users should be involved in publicly funded research. While several challenges were identified, training, institutional support and resources from funders could alleviate many of these. Findings reveal significant differences in attitudes between older adults in the general population and researchers. Further research with comparable larger samples is needed to confirm and understand the possible consequences such controversy might have and how to solve them. IRRID (International Registered Report Identifier): RR2-10.2196/17759.

Conditions for uptake of evidence-based knowledge in municipal care for older people in Sweden: a developmental evaluation.

OBJECTIVE: The objective of this paper is to describe the initial phase of a long-term collaboration initiative between a municipality and the Faculty of Medicine at a university in Sweden. The overall ambition of the collaboration is to strengthen the quality of care for older people. The concrete goal is to equip academically trained registered health care professionals (HCP) with tools for transferring evidence-based knowledge into practice. As municipal healthcare for older people is mainly carried out by staff lacking academic education, reg. HCP are key actors to bring in and consolidate an evidence-based approach in this setting. Developmental evaluation (DE) has been used to evaluate four separate activities in the initial phase. The activities where sequenced in a cumulative design to provide knowledge for further development of adequate tools. RESULTS: The cumulative design originally planned did not fit the internal logic of the municipality. Therefore, workflow and pace adjustments were made to proceed towards the joint ambition; the creation of fruitful conditions for the uptake of evidence-based knowledge. Long-term collaboration between academia and organizations outside academia demands a sensitive and flexible research approach, recognizing that collaboration implies mutuality and restricts the sovereignty of academia in designing research.

Objective Observer vs. Patient Motor State Assessments Using the PD Home Diary in Advanced Parkinson's Disease.

Background: The Parkinson Disease (PD) Home Diary (HD) is a commonly used clinical outcome measure, but it has not been extensively compared to direct assessments by experienced observers. Objective: Validation of patient-reported HD by investigating the agreement between motor state assessments by patients and observers. Methods: This observational study included patients with PD and motor fluctuations. Observers were physicians or research nurses. Patients completed a screening visit, one day of diary ratings at home, and then two days of ratings on-site during which patients and observers simultaneously judged the participants' motor state. Results: Observers and 40 patients completed 1,288 pairs of half-hourly blinded motor state assessments. There were significant differences between observer and patient ratings (P < 0.001) and the temporal agreement was poor (Cohen's κ = 0.358). The agreement between patient and observer ratings was 71.1% for observed "On without dyskinesia", 57.3% for observed "Off", and 49.4% for observed "On with dyskinesia". Daily times spent in the three motor states as aggregated diary data showed fair to excellent reliability with intraclass coefficient values ranging from 0.45 to 0.52 for "On" and 0.77 for "Off". Conclusion: There were significant differences between observer and patient ratings. Patients and observers generally agreed on when the patients was in the "On" state (with or without dyskinesia). Patient ratings on the hour level seem to be influenced by other aspects of the patients' experience than the observed motor state, but assessment of daily time spent in the different motor state provides reasonable reliability.

Awareness of and attitudes towards public involvement in research on ageing and health among older people in Sweden.

BACKGROUND: While the importance of involving older people in research is increasingly acknowledged, quantitative studies exploring the perspectives of larger samples of older people who take an active role in research on ageing and health are scarce. The aim of this study was to investigate the awareness of and attitudes towards public involvement in research on ageing and health among older people in Sweden. MATERIALS AND METHODS: Data derived from a survey (N = 881) of people aged 60 years or older in Sweden. Demographics, self-rated health, and attitudes were analysed using descriptive statistics. Awareness of and previous active involvement in research were analysed using chi-square tests and Mann Whitney tests. Factors associated with willingness to be actively involved in research were determined by logistic regressions. RESULTS: Of the 26% who responded (N = 881), 39% (n = 343) were aware that they could be actively involved in research. Awareness and previous active involvement in research were significantly associated with a higher level of education. Public involvement was believed to enhance research communication and enable valuable contributions related to ageing. The proportion of respondents who were willing to be actively involved in research was significantly higher for respondents with previous experience and a higher level of education. CONCLUSIONS: Engaging older people in Sweden in research targeting active involvement in research presents a challenge. The study shows an over-representation of people with higher education, who tend to be more aware, have previous experience, and are more willing to be involved in research with public involvement. This implies a risk that groups with lower education are not represented, and that knowledge co-produced with mostly highly educated groups will lead to a biased picture. Further studies are needed to understand how an increased awareness of research and willingness to participate can be achieved. IRRID: RR2-10.2196/17759.

Challenges related to self-assessment of active ageing during the Covid-19 pandemic in Sweden.

OBJECTIVE: The aim is to describe and reflect upon potentially pandemic-related impact on self-assessments of active ageing. As part of the baseline data collection in the Prospective RELOC-AGE (ClinicalTrials.gov NCT04765696) study, telephone interviews, including the University of Jyvaskyla Active Aging Scale (UJACAS) were conducted with 820 people 55 years or older listed with an interest of relocation at three housing companies in Sweden. Field notes alongside the interviews focused on two topics: (1) how respondents reasoned and replied to the questions included in the UJACAS; (2) whether there were specific items that seemed to be affected by the pandemic. RESULTS: For four items (Participating in events, Exercising, Maintaining friendships, Getting to know new people), recurrent comments indicated that respondents had been affected by the pandemic situation regarding one or more of the facets in UJACAS: will to act, ability to act, opportunity to act, or frequency or extent of doing the activity. Opportunities to act was most frequently commented on as a factor affected by restricted participation in activities. As Prospective RELOC-AGE is a longitudinal study focused on associations between housing, relocation and active ageing, it is imperative to consider the potential pandemic-related impact on baseline data in future analyses.

People with Parkinson's disease and housing issues: A scoping review.

BACKGROUND AND AIMS: There is evidence that housing issues are associated with health outcomes as people age, but little is known in this respect regarding the specific population of people with Parkinson's disease (PD). The objective of this literature review was to identify and analyze the knowledge gap concerning people with PD and housing issues. METHODS: Applying established guidelines for scoping reviews, a systematic literature search was done in relevant databases applying the following inclusion criteria: empirical studies including human participants with PD, addressing housing in the objective, hypothesis or research questions, and published in English in peer-reviewed journals. Data were analyzed using a framework of domains, factors, and variables influencing housing decisions among older people. RESULTS: Twelve publications were identified, originating from a few researchers and with very different scopes. While the social dimension was scarcely attended to, the publications addressed all six domains of the analytical framework and 30% of the variables specified therein, but many were only used for descriptive purposes. CONCLUSION: This scoping review reveals that there is a substantial knowledge gap regarding people with PD and housing issues. The knowledge gap is most evident in the social dimension, while the studies identified provide more information relating to the health dimension than what is the case in research on housing targeting the general aging population. Because society urgently needs evidence to support the development of housing policies and provide suitable housing for this vulnerable population, more research targeting people with PD and housing issues is warranted.