Charlotte Löfqvist

Background. The complex nature of late-stage Parkinsons 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 Parkinsons, 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 Parkinsons 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 Parkinsons.

The aim is to describe the development of a novel interdisciplinary graduate school, using the Swedish National Graduate School for Competitive Science on Ageing and Health (SWEAH) as a case example. We explore doctoral students’ perceptions of being part of SWEAH and provide implications for practice. Written self-reports reflecting 78 students’ experiences and perceptions were analyzed using thematic analysis. The findings reveal that affiliation with SWEAH is highly valued. The students emphasized the tailored courses and learning activities and reported that it was instrumental in deepening their knowledge and broadening their research perspectives. The findings demonstrate how students navigate between disciplinary and interdisciplinary contexts and become enculturated with intellectual mindset and understanding of the importance of network building. The graduate school adds an interdisciplinary layer of learning, influenced by peers and researchers, and demonstrates the importance of community building within interdisciplinary environments and how it can be achieved.

In the late stage of Parkinsons disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients and their informal caregivers satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive. This qualitative substudy was part of the longitudinal European multicentre Care of Late Stage Parkinsonism (CLaSP) project. Individual semistructured interviews were conducted with patients (n=11) and informal caregivers (n=9) in Sweden. Data were analysed through the content analysis technique. The final analyses generated one main category: We are trying to get by both with and without the formal care and five subcategories: Availability of health care is important for managing symptoms and everyday life; Dependence on others and scheduled days form everyday life; There is a wish to get adequate help when it is needed; Mixed feelings on future housing and respite care; and Family responsibility and loyalty for a functioning everyday life. Having regular contact with PD-specialised health care was perceived as important. Greater access to physiotherapy was wished for. Maintaining autonomy was perceived as important by patients, in both home health care and a future residential care setting. Responsibility and loyalty between spouses and support from children enabled everyday life to carry on at home, indicating a vulnerability for those without an informal caregiver. The results suggest that regular access to PD-specialised health care is important and that a specialised and multidisciplinary approach to the management of PD symptomatology is likely necessary. Non-PD-specialised staff in home health care and residential care facilities should regularly be given opportunities to obtain PD-specific education and information.

Research has shown that positive evaluations of home are important for very old people’s health, well-being and independence in daily life. The rationale for the present study derives from our survey study findings, confirming such associations also in a younger cohort (N = 371). The purpose of this study was to further increase the understanding of the dynamics of meaning of home and health among community-living healthy younger older people, in the present and in a projected future. Data were collected through semi-structured interviews with 13 persons aged 67–70 years living in ordinary housing in Sweden, followed by a qualitative content analysis. Findings suggest that the home becomes progressively important after retirement. Not only the immediate home environment but also local neighbourhoods influence perceptions about home. Home brings emotional and social benefits but also worries about how to cope with complex home ambivalence when reflecting upon future housing arrangements. The findings suggest that it is important to consider the role of perceived aspects of home for health and well-being in early phases of the ageing process. The findings could be used to raise awareness among policymakers, housing authorities and professionals involved in housing-related counselling.

The aim of this study was to explore the usefulness of research circle methodology in the later stages of the research process. In an active collaboration with the researchers, participants, that is, users of research, discussed and prioritized research on home and health dynamics. Reflections, comments, and evaluations from both leaders and users were analyzed, applying content analysis. The usefulness of the research circle methodology from the users´ perspective reflected the importance of the content, form for research presentations, leadership methods, and the mix of participants. Research leaders reflect on the role as challenging and demanding, where the composition of users plays an important role for the usefulness of the methodology, as well as for practicalities, form, and content of the research presentations. Research circle methodology offers opportunities for knowledge translation; however, it is demanding and presents a range of challenges, such as the heterogeneity of the group, that needs further exploration.

To meet the needs of an increasing, heterogeneous, ageing population it is imperative to understand links between home and health. In Latvia, only limited research targeting the health and home situation of very old people is available. Consequently, the aim of this study was to describe how the home environment and aspects of health have changed over nine years between 2002 and 2011 for very old people in Latvia, living in their home environment. This study is based on the Latvian part of the cross-national European ENABLE-AGE Project comprising data on objective, as well as perceived, aspects of home and health. Longitudinal data from those involved on both data collection occasions (N = 59) was used. At the nine-year follow-up, participants were between 86 and 90 years of age, still living in their own homes. The results show that not only health aspects varied along the ageing process, objective and perceived aspects of home also changed. The physical as well as the cognitive and emotional bonding to the home significantly increased i.e. aspects of meaning such as familiarity and feeling safe in your home, privacy and independence became more important for the very old participants over time. Life satisfaction increased over the years even though objective health factors decreased. Since aspects of home as well as health can be assumed to impact on the outcome of ageing, the situation for this age group in Latvia must be further studied in order to develop suitable and appropriate social and health services, policies and living conditions.

Purpose: To describe the most prominent use of or perceived unmet need of assistive technology (AT) and to compare the characteristics of users, non-users and those expressing perceived unmet need with respect to overall health, independence in everyday life, environmental barriers and socio-demographic features. Method: The study is based on data collected in the “Home and Health in the Third Age Project”. In all, 371 individuals participated and data were collected during home visits in southern Sweden by interviewers trained specifically for this project. The data collection comprised well-proven self-report scales and observational formats on the home environment and health indicators as well as questions about basic demographics and socio-structural data. Results: The proportion of users constituted almost half of the total sample. The most common types of AT used were for furnishing/adaptation (35%) and the highest perceived unmet need concerned AT for communication, in total 8%. Those cohabiting were to a higher extent users of AT for furnishing/adaptation, compared to those who lived alone. A higher perceived unmet need was seen among those who lived alone compared with cohabiting people. Conclusions: These findings are of importance for future planning and development of policy to improve health services for the new generation of elderly.

Purpose: This cross-national qualitative study explores how very old people reflect upon relocation and aging in place. Design and Methods: Swedish and German data are utilized in this study. About 80 community-living participants, 80–89 years of age, were interviewed with open-ended questions at home by trained interviewers. The interviews were analyzed by using conventional qualitative content analyses. Results: Reasoning about relocation or aging in place in very old age is a complex and ambivalent matter. A variety of reflections, emotions, and behaviors for and against a move are revealed. Reasons to move reflect the urge to maintain independence, to stay in control, and to avoid loneliness. This is mainly expressed reactively. Reasons not to move reflect a strong attachment to the home and neighborhood. Moreover, reasons not to move reflect practical aspect such as economy and strain, as well as fear of losing continuity of habits and routines. Implications: There is a need for society to develop counseling systems to meet very old people’s ambivalence and practical considerations to move or not to move. Thus, the ambivalence to stay put or to relocate needs to be further explored from an applied perspective by also taking nonmovers into account.

The purpose of preventive home visits is to promote overall health and wellbeing in old age. The aim of this paper was to describe the process of the development of evidence-based preventive home visits, targeting independent community-living older persons. The evidence base was generated from published studies and practical experiences. The results demonstrate that preventive home visits should be directed to persons 80 years old and older and involve various professional competences. The visits should be personalized, lead to concrete interventions, and be followed up. The health areas assessed should derive from a broad perspective and include social, psychological, and medical aspects. Core components in the protocol developed in this study captured physical, medical, psychosocial, and environmental aspects. Results of a pilot study showed that the protocol validly identified health risks among older people with different levels of ADL dependence.