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P22. Quality of life

Detailed Programme, abstracts and presentations

P22. Quality of life (Saturday, 6 October, 10.30-12.00, Europa 4)

P22.1. Younger people with dementia: issues and new challenges

Marion Villez

In recent years, dementia issues have taken a new dimension with younger people with Alzheimer’s. Although early onset dementia concerns only a minority of people, but, due to specific obstacles they face, the challenges are more acute and can be considered as a magnifying glass of the usual dementia issues. Misdiagnosis, professional, financial, psychological and family problems (with young children as well as older parents, etc.) are amoung the main difficulties frequently observed in such patients.

The 3rd Alzheimer French Plan has recognized the question of housing for younger people with dementia as a key issue and has asked to the Fondation Médéric Alzheimer to realize a national survey.  

This survey was completed by a qualitative observation study focusing on 7 local initiatives supported by the FMA, since 2010, though call for projects and awards. Those very divers initiatives are especially dedicated to implement appropriate solutions to meet the needs of younger people with dementia and their relatives, at home or in residential settings.

More than 11 000 collective housing responded (676 000 places) : nursing homes for elderly people, homes for people with disabilities and psychiatric hospitals. Among these 676 000 places, only 2 500 younger residents with dementia are living in those structures. Moreover, we can note that a very few number of providers are involved in the implementation of initiatives for younger people with dementia. Their experience shows that even if they design projects especially for those persons, just a few (4 or 10 in a large area) have recourse to them. It is partly due to the fact that in the field of dementia, most of services and residential facilities are dedicated for elderly people. 

Both studies indicate how important it is to be able to give suitable and targeted information to young person with dementia and to their family but also to raise public awareness on this problem. Finally, it appears that to improve the quality of life of persons coping with such situations, a truly individual person centered care approach is needed such as one-one intervention. All those aspects and changing in the practices represent quite a challenge for the whole society and for professionals.  

P22.2. The “nursing oasis” - an approach to improve the quality of life of people with advanced dementia?

Renate Stemmer; Veronika Enders, RMartin Schmid

Introduction: The need for support for the increasing number of people with advanced dementia has led to the development of new residential care and nursing concepts. Often at this stage of the illness, severe physical and mental limitations occur. If the patient is in a single room, increased immobility or complete bed confinement frequently lead to isolation. Often other aspects of care, such as timely pain management and dealing with fears, are not well addressed during longer phases of isolation.

The "nursing oasis" project lies in the field of residential care and examines the support needs of people with advanced dementia. Other groups of people involved in the study besides the residents of the “oasis” are their relatives as well as the day-to-day nursing staff.    

The concept of a “nursing oasis” assumes that people with advanced dementia who live together in a smaller group experience a feeling of community: thus the well-being of the affected persons can be increased. With the constant presence of nursing staff, the inclusion of relatives, as well as olfactory or acoustic stimulation, positive results are expected.

Methods and materials: The "nursing oasis" gives accommodation for up to eight people in a common room in which the group stay during the day. In addition, four double rooms  exist so that residents can retire here at any time. Usually the residents spend their nights in the double rooms. Based on a tailor-made weekly plan, various daily activities such as music therapy and basal stimulation are carried out.  

The main objective of the study is the evaluation of the effects of a "nursing oasis". Above all, questions concerning the effects on the quality of life of the residents have been addressed. Aspects such as staff day-to-day workload and equipment required have been examined and the relatives have been asked for their opinion.The study includes a control group of people with advanced dementia who are living in a traditional residential home. The descriptive research design includes qualitative methods, for example observations and semi-structured interviews also as quantitative data collection. We use the following instruments: residents/quality of life: H.I.L.De; relatives/satisfaction with care: SWC-EOLD; staff/workload: BHD; staff/opinion: M-NCAS.

Results: Final results will be presented.

Financing: Compulsory long-term care insurance and the Foundation of Altenzentrum Antoniusheim Wiesbaden (Germany);

Timeframe: 2009-2012

P22.3. Quality of Care and Support in Shared-Housing Arrangements for Care-dependent Persons with Dementia – Is there a Relationship with Quality of Life?

Karin Wolf-Ostermann, Andreas Worch, Saskia Meyer, Johannes Gräske

Objectives: Within the last decade the number of Shared-Housing Arrangements (SHA) in Germany for care-dependent persons with dementia approximately increased seven times. SHA are disconnected from residential facilities and served by community care services. It is often claimed that they are beneficial to people with dementia especially in terms of quality of life (QoL). Nevertheless, results on setting-sensitive quality of care and support are lacking. We therefore assessed quality of care and support in SHA and investigated if a higher quality level results in verifiable higher QoL of residents.

Methods: Using a cross-sectional design, SHA in Berlin/Germany were surveyed for their quality of care and support as well as for residents’ QoL. In total, 396 residents in 58 SHA were included into the study. We used a set of quality indicators (QI) especially developed for SHA, regarding aspects of structures, processes and outcomes. Data were assessed by using standardized written questionnaires. Besides QI residents’ socio-demographic data and QoL (QUALIDEM) were evaluated.

Results: Residents in SHA are mostly female (69%) with a mean age of 78 years, living in SHA for nearly three years on average. Nearly three quarters of all residents have a dementia, mostly in a severe stage (GDS ≥ 6: 82.1%). QoL assessed showed moderate to high results (69.5 points out of 100 on average), showing a negative correlation with severity of dementia. The majority of QI, referring to structures and processes, suggest a high-quality care. But outcome indicators indicate a need to improve the quality of care and support, for example in relation to underweight and falls. Further results will be presented concerning the influence of quality of care and support on residents’ QoL.

Conclusion: Setting-sensitive QI are absolutely essential to measure quality of care and support in SHA. The study results will add some clarification as to whether or not claims of a better QoL in SHA due to quality aspects in care and support are viable.

P22.4. Quality of Life, Coping Strategies and Self-efficacy in Alzheimer’s Disease Caregivers

Ana Margarida Cavaleiro

An adequate adaptation to the role of caregiver is essential to ensure a good perceived quality of life by caregivers. Coping strategies are seen as a process that can mediate the impact caregiver’s face and its adaptation to the situation (Gignac & Gottlieb, 1996). The choice of coping strategies is related to perceived self-efficacy by caregivers (Fortinsky et al., 2002) and coping strategies are also considered a mediator between the quality of life and self-efficacy (Plata, 2007). The use of passive coping strategies decreased levels of quality of life (Riedijk et al., 2006).

Thus, finding coping strategies that lead to the most appropriate adaptation processes, as well as realize how important it is perceived self-efficacy in this process, can lead to establish useful interventions to improve the quality of life of caregivers. Subsequently, this study aims to understand the Quality of Life of people with Alzheimer's disease caregivers, through the relationships established between Quality of Life, Coping Strategies, Self-efficacy and Socio-demographic variables.

This presentation intends to reflect on the results of this comparative and correlational study between formal and informal caregivers, in order to establish intervention strategies that can provide caregivers a Good Perceived Quality of Live in order to achieve a greater adaptability to Alzheimer's disease and to the role of caring.

P22.5. Green Day Care as a modell for daycare offered people suffering from dementia

Anita Ellefsen, Per Kristian Hilden

Approximately 20 municipalities in Norway offer farm-based day care services for persons suffering from dementia – so called Green Day Care. One of these is operated in the region of Oslo,Grønn omsorg i storbyen, offering farm-based day care for 6 persons with dementia at an early stage. The service is run by an NGO, The Church City Mission, with funding from the municipality of Oslo.

Over a period of 3 years,Grønn omsorg i storbyenhas systematically documented and examined feedback and observations through a qualitative action research methodology, put in place to facilitate continuous understanding of user experience, including both participating users and next-of-kin, in the interest of programme quality development and evaluation. This paper examines the main findings in this self-evaluation process.

Feedback from users was consistently positive. Participants and their next-of–kin express great benefit and satisfaction overall and with the various programme elements, including types and range of activspoities offered, the organization of the daily programme, the farm environment and programme staff (farmer hosts), food, transportation and programme-home communication and information. In this paper we discuss three dimensions of user experience in particular: (1) the peculiar characteristics of the farm as an arena offering opportunity for participants to experience coping, functional development and wellbeing/wellness; (2) the significance of user interpretation of farm-based activities as “proper work”, and (3) the importance and premises for an experience of close home-programme integration.

Knowledge about the benefits of various activity- and day care programmes to persons suffering from dementia is limited but growing. Though limited in scope, findings fromGrønn omsorg i storbyencontributes valuable insight into this important field, pointing out the factors that most significantly influenced user experience in the Oslo Green Day Care service.

P22.6. Women and men with dementia – recommendations for action

Katharina Heimerl, Elisabeth Reitinger, Eva Eggenberger

Person-centered and gender-sensitive communication with women and men with dementia can be realized in many empathic ways. Not only verbally but also by mimic, by gesture and through touch. Quality of life for people with dementia can be improved considerably through person-centered and gender-sensitive communication. This again has a positive impact on the care givers.

There are no simple recipes – researchers’ and care givers’ experiences agree on that fact. Narratives and experiences made by practitioners that are combined with results from participatory research can add up to reliable and sustainable recommendations for actions.

In a three years’ interdisciplinary and participatory research project, experts in methods of person centered communication (Validation according to Naomi Feil and Basale Stimulation) have worked together with care givers in hospitals and nursing homes and with researchers.

The result is a brochure that addresses people working in health and social care of all possible professional backgrounds. The brochure was published by the Austrian Federal Ministry of Health and contains an introduction to person centered care, research evidence for communication skills trainings, a description of two methods of communication, an insight into key elements of gender-sensitive communication and recommendations for organization development. The brochure concludes with several narratives about care situations with people with dementia in hospitals and nursing homes. The reflective parts of the narratives address ethical and quality issues in dementia care and by this means provide recommendations for action in person-centered and gender-sensitive dementia care.  A list of helpful resources and addresses is provided at the very end of the brochure.

The brochure has been printed in several editions, has been widely spread and is available as download on the webpage of the ministry of health.

Acknowledgements: The project was commissioned and funded by the Austrian Federal Ministry of Health



Last Updated: Thursday 15 November 2012