Maintaining the wairua: spirituality in dementia Chris Perkins, Alzheimers NZ Conference, 26 Oct 2018

So what is spirituality???? Spirituality is about what is essential to our humanity, embraces the desire for meaning and purpose, and has personal, social and transcendent dimensions (Allen & Coleman 2006) That which lies at the core of each person’s being, an essential dimension which brings meaning to life. Constituted not only by religious practices, but understood more broadly, as relationship with God, however God or ultimate meaning is perceived by the person, and in relationship with other people (Elizabeth MacKinlay 2002). “Spirituality means different things to different people.  A working definition may include: one’s ultimate beliefs and values; a sense of meaning and purpose in life; a sense of connectedness; identity and awareness; and for some people, religion”. (Richard Egan, 2009)

Spirituality vs religion A person or group’s relationship with the transcendent Quest for meaning and purpose Connectedness with others , nature or the divine Values Religion Set of beliefs practices and language that characterizes a community that is searching for transcendent meaning in a particular way, generally based on belief in a deity. Transcendence= more than material existence (Chattopadhyay 2007) Tane mahuta in the Waipoua forest: still, cool, silent and very old and very sacred… Tane mahuta was a sapling at the time of the birth of Christ. Wiata

Dr. Chris Perkins, The Selwyn Foundation 24th August 2011 Relationship: Intimacy with others and/or God Environment: Nature Sea, mountains, gardens S P I R I TU A L I T Y- Ultimate Meaning Mediated through Religion: Worship Prayer Reading of Scripture Meditation This demonstrates the way spirituality is mediated / expressed / receive spiritual nurturing in older people taken from Elizabeth MacKinlay’s 2001 research with older people- The arts: Music, Art, Drama, Poetry Dance 6/11/2018 Dr. Chris Perkins, The Selwyn Foundation 24th August 2011

Relationship (connectedness) Arts Nature Religion Place What NZ participants in ageing and spirituality workshops said about accessing spirituality Relationship (connectedness) Arts Nature Religion Place (Perkins, 2010) Relationship; “ laughter”, “being selfless”, “Family- via memories-in the present” Arts: “dance and movement”, “access to paints to create”, Music played for me”, ”reading” Nature: “smell of flowers”, “ sun on my face” Religion: “joining in sacred music”, “beliefs and practices in our own tradition”, “prayer’, ”meditation” Connectedness: connection to our deepest self, connection to the whole of life, full connection to our inner and outer states or worlds, connected to beingness. And about place they said they found spirituality : In a quiet zone--In sacred spaces-- In church But also metaphorical places: Inner space of clarity --A space where I bring myself fully and am real and full -- A place where it is as it is. So what happens in dementia?

Spirituality is no different in dementia: only the brain changes Spirituality is no different in dementia: only the brain changes. The intrinsic value of a person is never lost (Goldsmith 2004) Either spirituality doesn’t change or deepens – dementia as zen state – living in the moment “ I have become very spiritual of late, which I suppose is a natural tendency when one comes face-to-face with the end of life, or at least the end of life as one knows it.” (Jaime Lee.)

There is no doubt in my mind that relationships, nature, religion and art also apply to people with dementia. And our study of people in secure dementia units confirmed that all these aspects of spirituality were very important.

So what is spirituality???? Spirituality is about what is essential to our humanity, embraces the desire for meaning and purpose, and has personal, social and transcendent dimensions (Allen & Coleman 2006) That which lies at the core of each person’s being, an essential dimension which brings meaning to life. Constituted not only by religious practices, but understood more broadly, as relationship with God, however God or ultimate meaning is perceived by the person, and in relationship with other people (Elizabeth MacKinlay 2002). “Spirituality means different things to different people.  A working definition may include: one’s ultimate beliefs and values; a sense of meaning and purpose in life; a sense of connectedness; identity and awareness; and for some people, religion”. (Richard Egan, 2009) How does meaning and purpose apply to people who have lost cognitive skills? These concepts are future and past focussed and are they relevant to people living in the moment?

One of the limiting features of Western Christian thought is “its considerable emphasis on rationality; man’s power of reason as the distinguishing mark of humanity.” (Allen & Coleman 2006) This has been one of the problems for people with dementia…that because they can’t reason, they are seen as not being fully human. And if they’re not human, can they be spiritual?????? For me: the issue is about having “meaning or purpose”, or even “beliefs and values” for a person with advanced dementia.

A better way to understand spirituality? Transcendent within and without… (Transcendence: more than material existence). Spirituality as connection-A. Holmes (2010)

“people with dementia have to be understood in terms of relationships, not because that is all that is left to them, but this is characteristic of all our lives.” Hughes, Louw &Sabat 2006 p.17

Te Ao Maori: the woven universe To take from Maori Marsden’s Te Ao maori- we are part of a woven universe, Defined by our connections That hold us in place regardless of our individual status.

We have a name for this: turangawaewae . We have a place to stand- where we are ourselves, we are who we are regardless of whether we have dementia or not. Turangawaewae is about identity and belonging It can be a geographical place, but is wider than just a physical place

Which brings me back to the photo you saw at the beginning of this presentation. This is my home in 1964 in the unfashionable western end of Karori in Wellington. It was cold and pokey. That’s my father standing outside and some of the neighbourhood children skating down the pavement. But I didn’t want to talk about the house, but the hills you can see behind. Some of you who are nearly as old as me will recall being sent out to play and being told not to come back until teatime. WE climbed the peaks in our gangs, ran in the wind and fell over hugging the warm grass on the hillside - like it was our mother. Makara, Karori and Terawhiti are my mountains… my place, my maunga Sadly, as I grew up the hills were bulldozed to build houses. I found that very painful. I left home and stayed away for a long time.

I think we all love the land – hence our distress when the bush is cut down, rivers polluted, rubbish left on the beach and the nature of the land changed for commercial interests

That is the physical landscape– unsurprisingly I grew up to be mountain woman -- and love the freedom and the spiritually exalting experience of the mountains. But the hills represent more than a physical place. That was an era. Baby boomers freely ranging the place feeling safe My place in Wellington of the 1950s and 1960s, with my friends and attitudes, in the golden age of the welfare state…. My parents and grandparents lived and grew up in Karori and are buried in the Makara cemetery just behind my hills. And so forth… all aspects of my identity and the reason I feel truly myself when buffeted by the Wellington wind. We all have our turangawaewae. It’s about our place in history, our ancestors, our descendants, our community and our current relationships as much as a physical place which is where I get back to Te Ao Maori

The beautiful thing about being part of the woven universe is that we are held in place by our connections. It doesn’t matter whether we remember who, what or where the connections are. We can’t lose our place.

Turangawaewae: at the heart of spirituality in dementia? Even when we forget, we are remembered. We keep our place in the world, in its history and geography. We have our spot in the present between our ancestors who go before us and our descendants who come after us. We are held in place by our families, our carers, our communities, our culture, our land, and our planet. We can never lose our place or our identity. Our identity is retained, even when we have forgotten who we are. Our connections remain to our land, our people and our time.

So to maintain the wairua, we might need to be helped to remain involved in the things that bring us joy – art, religion, nature, relationships.

“The needs of the human spirit do not wait until the priest or presbyter comes with prayers, hymns, holy words and sacraments… The caregiver who showers resident with a respect for the human body, who is attentive to the vulnerability of the human psyche and aware of the needs of the human spirit is providing spiritual care.” Eileen Shamy (2003) If others treat us with care and respect they will help maintain our wairua and honour us for the unique people we are and to retain our identity They confirm that we belong, that we have a place to stand

And those hills: they stopped bulldozing and turned it into Makara Peak Mountain Bike Park… which is as good an outcome as I could possibly wish – ironic though -- because none of us owned a bike . Wellington was too steep for the gearless bikes of the 1950s. Even when we have dementia you and I will always be ourselves -- because we can’t help it --- we have a unique place in this interconnected universe. We will always belong.

Questions and comments

Research into spirituality in dementia units Christine Perkins, Richard Egan, Rebecca Llewellyn & Bronwen Peterken(2015) Still Living, Loving, and Laughing: Spiritual Life in the Dementia Unit, Journal of Religion, Spirituality & Aging, 27:4, 270-287, DOI: 10.1080/15528030.2015.1037532