SS1 Living well with dementia

SS1.1 Change in dementia: the mother-son relationship

ROHRA Helga

Our talk focuses on the period leading up to diagnosis and eight years of living with a diagnosis of Lewy body dementia. It is about a young man, just 17 years old, who has had to deal with changes in behaviour and mood, and the symptoms of dementia experienced by his mother. We are critical about the lack of support for young people.

Our journey highlights the importance of spirituality and we share some of the strategies that we have developed in order to deal with dementia. We also focus on the social impact of dementia and on psychological changes in personality and show what has empowered us to say: "We are not victims of dementia but victors". Our message is a positive one, showing that life is worth living despite dementia.

SS1.2 How people with dementia can contribute to/participate in research.

HOUSTON Agnes

Join Agnes Houston and hear her personal experience of how she went from thinking that dementia research was all about being a guinea pig for big pharmacy looking to find a pill to cure dementia to discovering and participating in psychosocial research projects, and then being invited to join the team in Edinburgh Centre for Research on the Experience of Dementia.

SS1.3 How the CRPD can enhance my life living with dementia

ROCHFORD – BRENNAN Helen

This presentation will address the challenges of living with a dementia diagnosis within a wider human rights context.  It will specifically highlight the denial of rights that people living with dementia experience and how this, in turn, impacts on diagnosis and post-diagnosis supports. Drawing on lived experience and the wisdom of experiential knowledge, Helen Rochford Brennan provides a unique insight into living with dementia and realising her rights. Addressing issues such as stigma, social inclusion and equity, this presentation highlights how a human rights based approach to diagnosis can support people to live well with dementia.