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P1. People with dementia

Detailed programme and abstracts

P1.1. Goal-oriented cognitive rehabilitation in early-stage dementia: the GREAT trial

KUDLICKA Aleksandra, BAYER Antony, JONES Roy, KNAPP Martin, KOPELMAN Michael, LEROI Iracema, OYEBODE Jan, POOL Jackie, WOODS Bob, CLARE Linda

Text to be added on the 20/07/2017

P1.2. “Being apart improves being together”: day care to support families living with dementia – a comparative study in Norway and Scotland

ROKSTAD Anne Marie Mork, ROBERTSON Jane, MCCABE Louise, STRANDENÆS Margit Gausdal, TRETTETEIG Signe, VATNE Solfrid

This paper presents a study comparing experiences of day care for people with dementia and their carers in Norway and Scotland. Day care provision is prominent in both countries despite differing policy contexts: while emphasized in the Norwegian dementia plan, Scotland does not highlight day care as a focus in its national strategy. A qualitative cross-national study was undertaken to explore the experiences of those attending day care and their carers, and to compare these between the two countries. Semi-structured interviews were conducted with 17 people with dementia and 17 caregivers in Norway, and 19 people with dementia and 15 caregivers in Scotland. The research sought to engage directly with people with dementia and emphasizes their views and opinions about day care services alongside those of their family carers.  Data were analyzed thematically and comparatively to explore experiences and outcomes. Despite differing policy contexts, there were strong similarities in experiences of people in the two countries, particularly in relation to aspects of day care that supported a sense of wellbeing. People with dementia described benefiting from a sense of togetherness while at day care. Experiences of inclusion and social support were highlighted as important. Caregivers described benefits from a break from their caregiving role with the knowledge their relative was safe and enjoying an active, social day. While these outcomes are separate but connected, day care also directly supported the relationship between people with dementia and their caregivers and had the potential to improve wellbeing for both. Being apart improved being together. Sustaining relationships between people with dementia and their caregivers is vital, with the potential to reduce stress and burden for carers and enabling them to continue caring.  Day care should therefore be viewed as a service that has the potential to enhance relational as well as individual wellbeing. 

P1.3. From personhood to policy in dementia, lessons from Ireland

HENNELLY Niamh, O’SHEA Eamon

Background: Personhood and its realisation in person-centred care is part of the narrative, if not always the actuality, of care in all kinds of settings for people with dementia. However, there is a paucity of research into personhood in dementia and public policy, in relation to origins, content and impact. This paper examines how personhood is conceptualised, prioritised and operationalised within dementia care in Ireland, as reflected in the Irish National Dementia Strategy.

Methods: A content analysis of submissions made in the drafting of the Strategy, and of the Strategy itself, explores the degree to which personhood has influenced the development and content of policy. The submissions are further categorised into competing dementia care models. A structural analysis of the Strategy examines its principles, actions and outcomes in relation to personhood.

Results: Of 72 submissions, 61% contained references to personhood and its synonyms; 40% of the submissions fit a biomedical model, 31% a social model and 29% a biopsychosocial model. The Strategy contained one direct reference to personhood and 34 references to synonyms. Of these, half were contained within its key principles and objectives; none were associated within priority actions or outcomes. While the Strategy identifies personhood as one of two key principles, this is not reflected in its actions and outcomes. There is no clear signpost as to how the principle of personhood should influence education, training and service provision in dementia care.

Conclusions: This research has implications for the future development of dementia care policy in Ireland, particularly in ensuring that the principle of personhood is reflected in measurable actions and outcomes. Clear direction on how personhood can be supported in practice is absent from the Strategy. The challenge, therefore, is to provide the knowledge, incentives and resources for personhood to take hold in dementia care in Ireland.

P1.4. The resilience reserve: explaining resilience in the context of dementia

CHRISTIE Julie

This paper addresses the subject of resilience in the context of dementia. Resilience has been variously described as a set of characteristics, as a process, as a strategy and as a perspective, with no single agreed definition or application at this time (Anderson, 2015).  However, the term is used with increasing frequency with respect to living well with dementia and the outcomes for post diagnostic support. Within the dementia literature, resilience is predominantly discussed in relation to carers and care-giving. Harris and Keady stated in 2008 that moving to a resilience discourse would change social perceptions of dementia. Yet, despite this, the literature attempting to understand resilience in dementia remains relatively rare and there is a focus on those in the earlier stages. This paper explores the concept of resilience with reference to the author’s PhD research in this area.

The interplay between a person with dementia’s life experience, previous knowledge and skills and social factors, including networks and access to resources has not been well understood until now. This papers describes the research findings linking identity and resilience in the context of work with six people who are ageing with dementia. The author proposes that the preservation of identity could be re-framed as the outcome of a resilience process. This paper explores the ways in which each person could potentially acquire resources over their life which could help to mitigate threats to identity which occur through dementia. This is referred to as the resilience reserve. This paper details the potential domains of such a reserve and makes recommendations for practice and future research in order that the resilience of the person living with dementia might be realised. 

P1.5. Sowing the Seeds: Co-creating a framework for the delivery of meaningful community gardening initiatives involving people with dementia

NOONE Sarah

This presentation will chronicle the development of a framework for the delivery of meaningful community gardening initiatives for people with dementia, based upon the findings of an action research study.

Though an increasing body of evidence suggests that outdoor activities offer many benefits for people with dementia, access to nature is routinely denied to people living with the condition, compounding the feelings of social isolation and disempowerment expressed by such individuals. A small number of studies have identified positive associations between gardening and dementia; however, these studies collected data from researcher observations, as opposed to participant interviews, limiting their ability to capture the nuances informing their participants’ experiences. Existing guidelines concerning gardening and dementia are primarily concerned with risk aversion, rather than providing a meaningful, beneficial experience for people with dementia.

The first phase of this action research study concerned the delivery of a community gardening initiative for people with dementia, with the researcher conducting qualitative interviews following each session to explore the participants’ experiences. The findings revealed that for people with dementia, gardening is not simply a matter of enjoying time outdoors; it is a forum for the expression of identity, and establishment of autonomy. The project fuelled a sense of achievement, provided stress relief, and enabled participants to form a new social unit based upon a shared interest, rather than a shared diagnosis.

These discoveries informed the creation of a practical resource intended to guide horticultural and dementia care professionals in the delivery of gardening initiatives designed to enable people with dementia to obtain maximal enjoyment and benefit from outdoor spaces. This presentation will detail the collaborative design of the resource, which was co-created with people with dementia and therapeutic horticulture professionals, to ensure the development of a meaningful, empowering framework for community gardening involving people with dementia.

P1.6. Philanthropy and the person with dementia: influencing dementia policy in Ireland

CARNEY Patricia, O’SHEA Eamon

The publication of a National Dementia Strategy in 2014 was a significant milestone in the development of a more holistic, integrated and person-centred dementia model in Ireland. Personhood and citizenship are clearly identified as core underlying principles of the Strategy. This paper examines the various influences on the development of that Strategy and how philanthropy, through the work of The Atlantic Philanthropies, has helped shape policy formulation and implementation in dementia care in recent years, supporting a greater role for the person with dementia in decision-making. Atlantic has had an intensive funding relationship with Ireland in recent decades, initially supporting public infrastructural development in higher education, followed by investment in human rights, disability and ageing. Atlantic began funding dementia directly in 2011, investing €33 million over five years and leveraging a further €51 million from government and related agencies. Atlantic’s investment programme in Ireland was far reaching, covering: advocacy and awareness; service transformation; education and training; brain health; and measurement, research and evaluation. Atlantic funding helped shape content and objectives within the Irish National Dementia Strategy and supported its implementation. Without Atlantic, the Strategy would have been cost neutral, given the country’s budget deficit and the austerity rules that applied to all areas of public expenditure at the time. People with dementia now play an increasing role in decision-making in Ireland. For example, The Irish Dementia Working Group comprising people with dementia, have been involved in many advocacy campaigns in mainstream media, as well as collaborating in dementia research, education and training. A person-centred approach to dementia care delivery is now much more common in Ireland, associated with the evolution towards a biopsychosocial model of dementia in the country. A greater emphasis on the person with dementia in Ireland has been influenced by Atlantic’s involvement in the policy process and carries lessons for other countries wishing to adopt such an approach.

 

 
 

Last Updated: Monday 23 October 2017

 

 
  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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