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P12: Care pathways

Detailed programme, abstracts and presentations

P12: Care pathways

P12.1. Towards a restraint free dementia care – a national initiative

HOFFMAN Wilhelmina, NORDBERG Gunilla

Since the 80’s there has been an ongoing discussion in Sweden regarding restraints in dementia care, and it has been the subject of numerous investigations. Even if the intent is good, the use of restraints within dementia care is not consistent with the Swedish Constitution.

Is dementia care without restraint really possible? Some argue that this is impossible, whilst other claim that a restraint free care is possible by constantly revaluate and develop alternative working methods. A restrain free care is about preventing threatening situations and behavioural and psychological symptoms of dementia (BPSD) that can create disturbance. Person-centered care is the key to avoid difficult situations and develop strategies to approach if these troublesome situations occur. This prevents the risk of thinking that restraints are the “only solution”.

The Swedish Dementia Centre (SDC) received 2013 a commission from the Swedish government to create an educational package regarding how to work towards a restraint free care. SDC has developed the package, under the name “Vision Zero”, with the help and support of many experts and knowledgeable persons around the country. The package consists of web based educations, one for leaders and one for care workers, a handbook on the web and in paper format for people working within the area. In addition a pamphlet for family carers and two applications for smartphones and tablets. Our hope is that this package will lead to a dementia care free from restrain.

The knowledgebase of dementia is under intense development at the same time as the care of persons with dementia face both opportunities and challenges.

SDC, established 2008, is a non-profit foundation and the Swedish national centre for excellence in dementia care. SDC actively promotes future development in care of persons with dementia – towards a more dementia friendly society.

P12.2. “If we can get through this week” – experiences of formal dementia home and community care in Ireland

HOPPER Louise, JOYCE Rachael, STEPHAN Astrid, BIEBER Anja, IRVING Kate, VERHEY Frans

Access to formal dementia care services varies widely within and across European countries. This paper presents Irish data from one study within the Access to Timely Formal Care (Actifcare) JPND-funded research project. The study explored the personal experiences, and perceived barriers or facilitators in accessing formal home- and community-based health and social care systems from the perspectives of people with dementia, informal caregivers, and healthcare professionals. An exploratory qualitative design with purposive sampling was used. Two focus groups were conducted with people with dementia already using, or having previously tried to access, formal care (n=8); three with informal caregivers of different ages and with different relationships to the person with dementia (n=16); and three with healthcare professionals from a variety of backgrounds (n=18). Discussions followed an agreed structure, were tape-recorded, transcribed, and analysed using inductive content analysis. Common themes emerged across the groups with regard to: (1) Understanding Care Needs, (2) Accessing Services and Service Availability, (3) Education and Awareness, (4) Capacity and Rights, (5) Best Practice, (6) The Impact of a Dementia Diagnosis and (7) The Impact of Caring. Conflicting views were evident between the wishes of people with dementia and their caregivers (formal and informal), and also amongst healthcare professionals regarding the most appropriate time for care. A theme of Problems Resulting from Poor Care also emerged from the healthcare professional groups. These findings are interpreted in the context of Irish health and social care structures and recommendations are made in light of the recent publication of the Irish National Dementia Strategy. The findings support the increasing body of evidence that highlights the very clear gaps that exist between the formal home- and community-based care that is available in Ireland, and the care advocated for by people with dementia, their informal caregivers, and health professionals alike.

P12.3. Project Palliare: equipping the qualified dementia workforce to support advanced dementia care and family caring


Demographic ageing is a worldwide process with the associated incidence of dementia expected to increase globally to over 80 million by 2040. In the early stages of dementia many people live independently but, as dementia advances, living well requires increased levels of support and care. People at the advanced stage of the illness are particularly vulnerable and their needs may be complicated by communication difficulty, pain and behaviour that carers find difficult to understand. This can result in poor quality of care as the person with dementia cannot communicate their needs and preferences. At the advanced stage, people with dementia and their family need to be supported by a qualified and confident care workforce, who is both evidence informed and supported to continually develop their practice. Workforce training, commitment to good quality continuing care and services for people living with dementia are WHO priorities.  Education for care staff and partnership working with families is recognised at strategic and policy level across Europe.  However, the reality is that research and training on advanced dementia is scarce. This highlights the importance, in the face of the rising incidence of dementia, for accessible education to support and manage care for people with advanced dementia, making use of modern technology, communication and networking to support learning in a virtual environment.

The purpose of the paper is to present an overview of a European Union Erasmus + funded two year project, ‘Palliare’ which began in September 2014. The project aims to collaboratively create a range of practice based and experiential online learning resources to support carers of people in the advanced stage of dementia. This will be facilitated through a virtual international Community of Practice – a learning environment where people with common interest come together to share and learn from each other, to meet pre-determined needs. This paper will  focus  on one of the activities from the  Palliare project, the educational gap analysis of the qualified dementia workforce. This work will inform the development of the interprofessional learning modules. We will highlight the importance, and potential contribution, that this education can make in equipping the qualified dementia workforce to support advanced dementia care and family caring in the 21st century.

P12.5. Informing to improve: Exploring the views of people affected by dementia to develop better care pathways

KELLY Fiona, HEWARD Michelle, INNES Anthea

This paper reports on the Dementia Pathway Redesign project, funded by the National Health Service (NHS) England, Mental Health Dementia and Neurological Strategic Clinical Network. The aim of the project was to develop a diagnosis and post-diagnostic dementia care pathway for people with dementia and their families in the South of England that met their needs and wishes in a more equitable way.

To ascertain people’s current experiences of diagnosis and post-diagnostic support and identify gaps in services, seven focus groups were held throughout the region; representing its geographical (island, coastal and rural) and population size (city and small town) diversity.  A total of 73 people took part: 27 people with dementia, 37 carers or family members and 9 representatives of local communities or support workers of existing groups. The age range of people with dementia was 59-87 years and the age range of carers/family members was 40-89 years. The focus groups were lively and participants were eager to share their experiences and pleased to be involved in research with the potential to improve their lives.

A thematic analysis of transcripts from focus groups revealed variability in the support and information participants received, which impacted on their experience of diagnosis and post-diagnostic support. Participants told positive stories of their experiences, while others told stories of uncertainty and distress. This paper reports findings from focus groups and recommendations for a future pathway informed by these findings. It also discusses how pressure from government targets to increase diagnosis rates in the region meant that the focus of the pathway shifted from local communities to care homes, with the consequence that the views of people with dementia and their family carers living in their own homes  was side-lined in the development of the new pathway.



Last Updated: Monday 28 September 2015


  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene