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Finding Meaningful Connections

September marks Dementia Awareness Month. Guest writer Rev Prof Elizabeth MacKinlay asks, what does it mean to be diagnosed with dementia and what does it mean to live well with this condition?

Dementia is more than a disease of the brain, it encompasses the whole human being and their physical, mental, social, emotional and spiritual being. Therefore, how we respond to people who have dementia will be influenced not just by the physical disease, but also by social, cultural and spiritual factors. Society often carries the story of separation and alienation of the person who has dementia as ‘not normal’ - that they are no longer a person, that having dementia is a living death, they are seen as being an empty shell. But these notions are increasingly challenged by other stories that show different outcomes - that the person remains, even if communication becomes more difficult. New ways of seeing, acknowledge cognitive loss but at the same time see emotional and spiritual ways of connecting remain, including wisdom, humour and insight.

The challenge for us all is not to be trapped in negative stereotypes, and most importantly, not to be trapped by fear of dementia.

The way that dementia is experienced may differ, affected by personality, attitudes, education, resilience, culture, spirituality and what the person who has dementia believes about the possibilities of living effectively with the disease - and the characteristics of the people who accompany the person with dementia on the life journey. Indeed, ‘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, p.35).

Connecting effectively with others is vital for healthy human communities. When people experience increasing difficulties in communicating with others, the need for meaningful interactions does not decrease, in fact, it becomes even more important to find ways of encouraging continuing connectedness with others.

We can either empower or disable people who have dementia through our attitudes towards them. For example, we may disempower people by being too quick to find words for the person who is struggling to express themselves, as they often then lose the next thought and feel trapped and anxious. It is in that context that we enter into connecting effectively with the person who has dementia, and it is important to focus on meaningful conversation rather than trying to get the person to remember facts; that sets them up for failure. The story forms an important part of connecting for all of us, including people with dementia. It is at the emotional and spiritual levels that deepest connections can occur, and that is gratifying for all parties to the conversation.

The spiritual dimension is spelt out in the diagram – relationship, creativity, the arts, religion – and finding meaning in the midst of this experience. All these components are fertile ground for exploration in finding meaningful situations and connections with people who have dementia. All aspects are important including creativity and human imagination. Vitally engaging with people who have dementia assists them to find meaning and purpose in their daily lives, not just as spectators, but as participants in life.

Elizabeth MacKinlay is a registered nurse and a priest in the Anglican Church of Australia. She is a member of the Centre for Public and Contextual Theology at Charles Sturt University where she researches issues around spirituality, frailty and ageing. Her book: Finding meaning in the experience of dementia. (MacKinlay and Trevitt) was awarded the 2013 Australasian Journal of Ageing book prize. A companion book from 2015 is titled: Facilitating spiritual reminiscence for people with dementia: A learning guide. A second edition of Elizabeth’s book: The Spiritual Dimension of Ageing was published in 2017.

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