Workshop: Opening up the conversation Rev Prof Elizabeth MacKinlay AM PhD, RN Centre for Ageing and Pastoral Studies School of Theology, Charles Sturt University

Talking with people who have dementia What are the hardest things about trying to communicate with a person who has dementia?

Practising the conversation when I don’t think they can understand what I say: How can I as a care provider speak about things that matter with the person who has dementia? How can I speak with my family member who has dementia? How can I listen to the person who has dementia?

Ways of responding to people with dementia We found some families did not want the word ‘dementia’ mentioned to their loved ones. Why do you think that might be so? How often have you spoken to someone about their memory loss and dementia? – Is this an easy topic to talk about? Have you noticed that people have ‘expectations’ of someone with dementia? – What may these ‘expectations’ be? How might you respond to a family member who says ‘I don’t want to visit, I would rather remember them how they used to be – he/she is not the ‘same’ person anymore.’

The person with dementia: relationships “people with dementia have to be understood in terms of relationships, not because this is all that is left to them, but because this is characteristic of all our lives.” (Hughes, Louw and Sabat 2006 p35).

Think back on your interactions with older people – those with or without dementia. What topics would you mostly talk about or listen to? Are there any topics that you think are not appropriate to talk about with older people? Have you ever asked them what brings meaning, or joy or sadness to their lives?

Whose behaviour? Is it the behaviour of the person with dementia OR Is it the behaviour of the family and /or care providers that needs to be modified? Kitwood’s malignant psychology, Bird’s work with staff

Kitwood and ‘malignant social psychology’ or – how we behave with people with dementia Disempowerment Infantilisation Intimidation Labelling Stigmatisation Outpacing Invalidation Banishment Objectification Ignoring Imposition With-holding Accusation Disruption Mockery Disparagement

Identifying examples of malignant psychology in action Can you identify and give examples of any or all of these aspects of malignant psychology. What do you think are some of the underlying issues related to these types of behaviours? What effects do you think these behaviours might make to the people with dementia? Is it easy for the person with dementia to modify these behaviours? Have you ever seen the same person with dementia respond differently when cared for by different people? Can you think of any ways to reduce or eliminate these types of behaviours in aged care and our community?

Staff stress and resident behaviour Staff stress can be reduced when staff understand reasons for behaviours: their own and residents’. Different staff responses to same residents can make real differences in the ‘behaviours’ of residents.

Good communication especially with people with dementia involves engaging in social interaction as well as achieving set tasks providing support for the person’s sense of identity and self worth ensuring that the exchanges are a two-way process by listening and responding to one another being aware that any communication involves the communication of an attitude of concern and care allowing enough time for communication to achieve these broader goals. (Crisp, 2000).

Effective communication involves Connecting with the person emotionally and spiritually

Questions of meaning in life What brings greatest meaning to your life? Where do you find purpose in life? – Often responses relate to relationship and connectedness

Growing older and transcendence What’s it like growing older? What are the hardest things in your life now? As you move closer to the end of your life what do you hope for?