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Symposium S1: Facing dementia together - People with dementia and their carers

Detailed Programme and abstracts

Friday, 1 October 2010: 09.00-10.30 (Red Room)

S1.1. Facing dementia as a couple

James and Maureen McKillop, Scottish Dementia Working Group, United Kingdom, james_1940@hotmail.com

Maureen has her views on James's abilities to live life with dementia. James, who has dementia, has his, and they rarely coincide. They hope the presentation will give delegates some insight into the everyday events which can cause problems for both of them. They do not seek to give solutions as they believe people can best manage their lives themselves, with a bit of give and take.

Couples will have their own life experiences and woven into the mixture will be where they live, children, friends, workmates, social contacts and neighbourhood (e.g. country, islands and towns). They will realise that what works for them, may not work for someone in another area. We are all individuals.

Children will have known their parents all their lives and likewise will know what made them the person they are and how to support them to continue to be that person and stay at home as long as possible.

They hope that authorities appreciate that people with dementia and their carers have distinct and separate needs.

S1.2. Who cares for me? - Trends in family caregiving in European countries

Dieter Ferring, INSIDE, Université de Luxembourg, Luxembourg, dieter.ferring@uni.lu

Responsibility of caring in the case of sickness or disability has traditionally been assigned to close family members although (or because) this may become an enormous emotional and physical strain for the caregiver and his or her family system. The present paper addresses three issues within this context: First, it will outline trends in family caregiving in several European countries by investigating the willingness to support a family member in case of sickness or disability out of differing generational perspectives. Second, it will illustrate the psychosocial situation of family caregivers by referring to indicators of emotional and physical strain. Third and closing, it will give an overview of factors at the individual as well as the social and sociopolitical level that may facilitate or aggravate the task of caring for a family member.

S1.3. Slaying the dementia dragon: Alzheimer organisations responding to stigma and social isolation

Gráinne McGettrick, The Alzheimer Society of Ireland, Ireland, gmcgettrick@alzheimer.ie

Stigma, regardless of its origins, creates fear, shame, social isolation, discrimination and perceptions of negativity. The stigma associated with dementia has significant impact on the way people with dementia live their lives. Stigma assigns the person with dementia to a ‘new social group’ associated with devaluation, mistreatment, social exclusion and loss of status. (Alzheimer’s Society, 2008). In order to reduce the stigma associated with dementia and its consequences, dementia needs to be ‘normailsed’ and seen as part of everyday life. (Nuffield Council on Bioethics, 2009) So how can the stigma associated with dementia be addressed? What role do Alzheimer organisations play in addressing stigma in dementia?

There is a moral imperative on us as Alzheimer organisations to take action to tackle stigma. We have to move the dementia agenda into the socio-political and economic arena and create a dementia discourse that is not just medically led. Alzheimer organisations need to enable rights-based principles to emerge in the dementia landscape providing a right to a diagnosis, a right to services and a right to be part of the mainstream community in which they live. There must be solidarity with the person with dementia and solidarity in the Alzheimer movement to address this issue. We must grow the grassroots movement, learn from people with dementia about the lived experiences and most importantly support the voice of the person to be central to dementia policy and services. Richard Taylor, a person with dementia, speaking at the Alzheimer Disease International conference in 2009 says “For better or for worse, the world depends on the people seated in this room to make it right for people living with dementia … let us in! Affirm our worth by partnering with us”. (Taylor, 2009)

Alzheimer organisations are key agents of change. They can provide the thought leadership, create the space to enable the debate to happen, demolish the current understanding and reconstruct new meanings associated with ‘dementia’. Enabling the voice of the person with dementia is core to the addressing stigma and a key way in which Alzheimer organisations can mobilise a meaningful and sustainable response. Creating awareness and education are important to addressing stigma and the associated social isolation but there is a need to move to a new social order where dementia is seen as part of the norm. A social model of disability approach is being suggested as a potential framework to better understand dementia and challenge stigma in dementia (Gilliard et al., 2005). It shifts the focus away from the individual person to looking at how societal structures and societal responses create the stigmatisation. The ‘stigma of dementia’ resides not with the individual but in the broader socio-economic, attitudinal and architectural environments. Therefore, to address the issue stigma, Alzheimer organisations need to tackle these various barriers. This is certainly a challenge for all Alzheimer organisations and the Alzheimer movement in the next decade. We can no longer have dementia occupying ‘a dark place still’. (Nolan, 2006)

Bibliography

  • Alzheimer’s Society (2008) Out of the Shadows, London: Alzheimer’s Society
  • Gilliard et al. (2005) Dementia care in England and the Social Model of Disability Dementia: the international journal of social research and practice 4(4) 571-586
  • Nolan, L. (2006) Perceptions of Stigma in Dementia: An Exploratory Study, Dublin: The Alzheimer Society of Ireland
  • Nuffied Council on Bioethics (2009) Dementia: Ethical Issues, London, Nuffield Council on Bioethics
  • Taylor, R. (2009) What’s it like to live with Alzheimer’s disease? Presentation to the Alzheimer’s Disease International Annual Conference, Signapore March 2009

S1.4. An ethical framework to support people with dementia and their carers

Julian Hughes, Consultant in Old Age Psychiatry and Honorary Professor of Philosophy of Ageing – Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, Newcastle University, UK, j.c.hughes@ncl.ac.uk

The ethical issues that arise in the context of care for people with dementia are everyday; they especially affect family carers. In this talk I shall present and reflect upon the report produced by the Nuffield Council on Bioethics entitled 'Dementia: Ethical Issues', which appeared in October 2009. The report provided a framework for dealing with ethical dilemmas. I shall present this and then show how the framework can be used to approach a variety of difficult decisions that might occur in the course of looking after a person with dementia. The issues include the central difficulty of having to make decisions for other people who are no longer able to make decisions for themselves. There are then particular dilemmas ranging from telling someone the diagnosis to confidentiality to end-of-life decisions. Of central importance here will be the notions of personhood and solidarity. There is also the issue of research and the lack of equity in terms of money spent on dementia research compared to the amounts spent on other conditions. In short, we need a revolution at every level - personal, regional, national - in order to respond to the moral imperative to improve care for people with dementia and support for their families.

 

 
 

Last Updated: Wednesday 03 November 2010

 

 
 

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