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PL3: Dementia-friendly society

Detailed programme, abstracts and presentations

PL3: Dementia-friendly society

PL3.1  Arts programmes for people with dementia: what are their effects?

WOODS Bob, WINDLE Gill, HOWSON Teri, ALGAR Kat

There are numerous examples around the world of creative artists working with people with dementia and many anecdotal accounts of the impact this interaction can have. There are fewer systematic, rigorous evaluations of the effects, despite the growing literature on psychosocial interventions in general.

This presentation reviews the evidence-base for creative arts programmes in dementia care, and addresses some of the methodological issues that arise in evaluations of this type. The results from a series of studies led from Bangor University, attempting to develop a methodological framework that is both rigorous and capable of capturing some of the key elements of arts programmes in dementia care will be presented. These include the Dementia & Imagination study where mixed methods, including direct observation (Algar et al., 2014) as well as self-report quantitative outcome measures, are incorporated in the evaluation of a 12-week visual arts intervention. Programmes have been evaluated in both care homes and community settings, and observational methodologies developed and refined. More than 70 people with dementia have participated to date. Case studies of impact and engagement are presented, and consideration given as to ‘what’s special about the arts?’

It is argued that engagement in arts activities may, for the person with dementia, be different from engagement in other activities, but not necessarily greater in impact. However, there may be a particular effect on others witnessing the engagement – including staff, families, artists and the wider community. Any evaluation should seek to take multiple perspectives, recognizing that having a wider impact may bring a knock-on effect of reduced stigma for those living with dementia in the future.

‘Dementia & Imagination’ is funded by the UK Arts & Humanities Research Council (PI: Gill Windle)

PL3.2 People with dementia as partners: the example of the Irish Dementia Working Group

HOUSTON Agnes

In 2002, the Scottish Dementia Working Group (SDWG) was set up and I was delighted to become its first female Chair from 2010-2013. The purpose of the SDWG is to campaign to improve services for people with dementia and their families and to ensure that our voices influence the public policy that impacts on our lives. Since 2002, members of the SDWG have raised awareness at national and international conferences, spoken on radio and television and lobbied government and senior government officials on our needs as people living with dementia.

As a group we also acknowledge how research can influence, not only our lives as those living with dementia now but also those who will develop dementia in the future. We developed a research subgroup to inform research processes and the national research agenda and published our Core Principles for Involving People with Dementia in Research.

We have worked with Alzheimer Scotland and the Scottish Government to inform Scotland’s 2 National Dementia Strategies and will begin work on the third this year.  This is a significant investment at a Government level in terms of people with dementia being treated as partners in dementia policy. It would be rare that any high-level dementia policy meeting did not now include people with dementia, so we have come a long way.   

In my presentation, I will explain in more detail what the SDWG has achieved and how; but also talk about some of the challenges that go along with being a long-standing campaigning group and where we go next.  

PL3.3 The dementia friends campaign in the UK: a vital element for the development of a dementia-friendly society

HUGHES Jeremy

Dementia is a challenge to society as a whole. Lack of awareness and understanding of dementia in the communities has a major impact of the quality of life of those living with dementia and their carers.

Alzheimer’s Society has been leading the way to tackle the unacceptable stigma that surrounds dementia and working with organisations and communities to increase their dementia friendliness.  From an initial commitment in 2012 to raise awareness of dementia and for 20 cities, towns and villages to be signed up to become more dementia friendly, we now have over 1 million Dementia Friends and over 90 communities committed and working to become dementia friendly in England.  The UK has also been leading the way to promote and develop dementia friendliness at a European and wider global level.

Dementia friendly initiatives across the United Kingdom are now positively changing attitudes and action towards dementia.  Alzheimer’s Society’s Dementia Friends programme is our biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, acts and talks about the condition.

Dementia Friends was launched to tackle the stigma and lack of understanding that means many people with the condition experience loneliness and social exclusion. We need to create more communities and businesses that are dementia-friendly so that people affected by dementia feel understood and included.

Over one million people in the UK have become Dementia Friends in the first two years of the initiative. This number is made up of those who became Dementia Friends face-to-face, online and through their work at organisations such as Lloyds Banking Group and Marks & Spencer. As part of Alzheimer's Society's long-term commitment to help more communities and businesses become dementia-friendly, a new target of creating four million Dementia Friends by 2020 has been set. Alzheimer’s Society secured the backing of the Government for Dementia Friends and ran a national TV advertising campaign featuring celebrities alongside a person living with dementia.

National and local businesses and organisations, community groups, faith groups, individuals, young and old, who have become Dementia Friends now are committing themselves to go further and play their part towards creating a truly dementia friendly society through our Dementia Friendly Communities programme.

Dementia Friends, however, is only the first step towards creating a dementia friendly society.  Dementia Friends is the start, not the end.  By raising awareness and attitudes towards dementia we open the door to transforming the way every part of society – from the classroom to the boardroom – thinks and acts about dementia.

Countries across Europe are looking at ways to increase awareness and poor understanding of dementia.  Hearing about the experience and success of Dementia Friends in England will provide delegates with a first-hand insight about the challenges and ways to successfully mobilise society to change the way they think and act about dementia.

PL3.4 Age and dementia as a risk factor for domestic violence: what can we do?

KOPČAVAR GUČEK Nena

Violence is abuse of power, and every violation of fundamental human rights. Violence as a destructive form of interpersonal relations is undoubtedly at least as old as the concept of the family. Each of the types of violence (physical, sexual, psychological, including neglect and economic violence) may occur in family relationships. Domestic violence includes intimate partner violence, violence against children (child abuse) and violence against older (elder abuse).

Violence and neglect cause in the elderly unnecessary suffering, injury, pain, loss or violation of rights and it reduces the quality of life.  Medical abuse, neglect, abandonment and economic violence are most frequent forms of violence in the people with cognitive impairment, such as dementia. The prevalence of various forms of abuse in the elderly in the developed countries is 4 to 6% in domestic settings, dementia being an important risk factor.

Among older people living at home in European Union (EU) (about 142.9 million people) in the last 12 months prior to the survey 2.7% (approximately 4 million) older experienced physical violence, 0.7% were sexually abused(about one million), 19.4%  were exposed to psychological violence (approximately 29 million) and 3.8% to economic violence of (about 6 million). Violence is stated as the cause of 30% of all deaths in the elderly per year in EU.

Examples of good practices of raising awareness, improving education of lay and professional audiences and implementing new strategies will be presented and discussed. Healthcare, social care, non-governmental organizations and interested public have the potential to create a network for prevention, treatment and support for the vulnerable individuals, victims of family violence and people with dementia. Institut Antona Trstenjaka bridgeing intergenerational issues, Mreža Matija providing home care and assistance by volunteers and professionals and Emeritus University In Ljubljana are examples supporting the elderly and their families in Slovenia.

 

 
 

Last Updated: Thursday 24 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
 
 

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