The need for integrated, accessible and person-centred care for people with dementia to foster quality of life and facilitate life in the community has been voiced by health policy. Pharmacies have the potential to provide easily accessible information and support for people with dementia, caregivers and the public. The ‘Dementia-friendly Pharmacy’ programme aimed at re-orienting community pharmacy in Austria, focusing on stronger inclusion of professional counselling into core services. It followed principles of health promotion and person-centred care, aiming at empowering all actors involved, and at fostering quality of life. Methodologically, the programme was based on participatory health research, thus involving all relevant actors and consolidating their perspectives on issues related to dementia care. In the course of the programme, a workshop series covering topics relevant for dementia care in community pharmacy, as well as prototypes for small-scale projects were developed, and measures were taken for securing sustainability. Findings related to programme development and implementation encompass pharmacy staff’s motivation to participate in the programme, counselling knowledge and skills development, experience with building community partnerships and cross-organizational development and sustainability. Furthermore, effectiveness of the programme has been established. These findings are discussed against the background of re-orienting pharmacies.
There is a need for communication structures such as facilitated ethical discussions that enable nursing home staff to reflect their everyday decisions. Expression of emotions should be encouraged in ethical decision-making processes in nursing homes. Gender-sensitive reflection supports the development of palliative care as organisational culture.
Background A growing number of older people, mainly women, live in single households. They represent a vulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end of life. Non-kin-carers can play an essential role in supporting individuals’ preferences to stay at home. In research little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay at home even at the end of life. This paper aims to introduce the research protocol. Methods We plan to apply a qualitative longitudinal study to better understand how older people living alone and their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We will conduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20–25 complete data sets and up to 200 personal interviews were planned. These will be complemented by regular telephone contacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructing case trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshops shall assure quality and support knowledge transfer. Discussion This study protocol aims to guide research in a field that is difficult to approach, with regard to its topic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will be enhanced, which is of major relevance for future care planning. With investment in additional reflexivity and communication procedures innovative results and robust knowledge are expected outcomes.
In the spring of 2020, the Austrian government introduced COVID-19 containment policies that had various impacts on older people living alone and their care arrangements. Seven qualitative telephone interviews with older people living alone were conducted to explore how they were affected by these policies. The findings show that the management of everyday life and support was challenging for older people living alone, even though they did not perceive the pandemic as a threat. To better address the needs of older people living alone, it would be important to actively negotiate single measures in the area of conflict between protection, safety and assurance of autonomy.
Community based housing for people with dementia is gaining importance. In co-operation between the people concerned, their relatives, professionals and volunteers, person-centred care, nursing and guidance can be realised within small units. Questions regarding end of life, dying, grief and the role of palliative care form the basis of the exploratory qualitative study presented here. Coping with end of life, ethical decisions and the relevance of hospice and palliative care in the field are highlighted. The results of the study show that "shared flats for people with dementia" are good places for death and dying. Close relationships, good communication with relatives and highly motivated professionals can be regarded as powerful resources. So far only few co-operations between hospice and palliative care exist. Areas of improvement encompass clinical issues and coping with bereavement.
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