Elizabeth MacKinlay Centre for Ageing and Pastoral Studies Charles Sturt University Canberra, Australia

Sharing story A context of story: It has been said that We are story We live our lives in relationship with each other through story. Our identity is bound up in story What about story for people who have dementia?

Doing spiritual reminiscence focus on the meaning of events and experiences in the lives of the participants rather than on the description of the events remembered The process of small group spiritual reminiscence Setting up the group The meeting place Memory prompters and vehicles of story

Spiritual reminiscence Spiritual reminiscence helps the person with dementia to find meaning in life in the present, and develop strategies to accept changes of health, and increasing disability. It offers people with dementia the chance to talk about their fears and hopes and how they want to shape their life now. For those who hold a faith perspective of life, spiritual reminiscence can assist them to grow spiritually, through reflecting on the place of God or a deity and the faith community in the life journey.

But who is this person with dementia?  How can he or she still be a person if they cannot tell their story, logically and coherently?  In the view of some, they cannot be held to still be persons.

Spiritual Tasks & Process of Ageing: A continuing process Response to Ultimate Meaning Ultimate Meaning in Life Transcend loss/ disabilities To find final Meanings: my story and God’s story Find intimacy with God and/or others To find hope MacKinlay 1998

The need for community in dementia “As I travel towards the dissolution of my self, my personality, my very “essence,” my relationship with God needs increasing support from you, my other in the body of Christ. Don’t abandon me at any stage, for the Holy Spirit connects us. It links our souls, our spirits-not our minds or brains. I need you to minister to me, to sing with me, pray with me, to be my memory for me.” Bryden & MacKinlay 2002, p.74 Dementia-A spiritual journey towards the divine: A personal view of dementia.

Study of people with dementia and finding meaning in life Study* of 113 people with dementia in residential care Program over 6 week or 24 week weekly sessions of spiritual reminiscence. Pre study in-depth interviews. Pre & post weekly session behaviour ratings. Weekly sessions all audio recorded and transcribed, research assistants kept journals of all non-verbal behaviours. * ARC Linkage Grant Finding meaning in the experience of dementia: The place of spiritual reminiscence work. MacKinlay & Trevitt - book published 2012

Study of people with dementia and finding meaning in life Findings of project: MMSE (a measure of cognitive level scores full cognitive function) In the study some people with MMSE as low as four were able to respond meaningfully to questions, while others with MMSE of 15, and some up to 20 had significant problems in communicating (although a careful reading of the transcripts could give the general meaning). It appears that MMSE fails to predict how well people with dementia will communicate.

Findings: characteristics related to religion  Most of these older people with dementia acknowledged having a strong identification with the denomination they first remembered as children. (this will be different for the next cohort of older people, many have no religious background)  Only one had no childhood experience of religion.  Ten (of 32 reported here) do not attend church services now, but five of these related to God by belief and/or prayer

Spiritual and religious beliefs What do you think God is like? Do you have an image of God or some sense of a deity or otherness? If you hold an image of God, can you tell me about this image? Do you feel near to God? What are your earliest memories of church, mosque, temple or other worship? Do you find art or music expresses spirituality for you? Do you find plants, gardens, or animals are ways of expressing spirituality for you?

Spiritual and religious practices Do you take part in any religious/spiritual activities now? For example do you: Attend church services, engage in Bible or other religious readings, prayer, meditation or study groups? Are there particular cultural and / or religious beliefs that should be considered in your care? How important are these to you? How can we help you to find meaning now?

Participant religious practices & faith perspectives Mary MMSE 4 Childhood church & Sunday school “Yes I used to do that” Current church & other religious activities “Well I could I am sure, and might if I think, I have got a terrible pain of it, if I, kneel in fact, yes.” Does not pray What is God like? “My life, I mean I was here, then, when, you know, they were in and out to me, really, and it is a long thing to tell you anything, or, I am still dressed and everything.”

Participant religious practices & faith perspectives Peggy MMSE 17 Childhood church & Sunday school Rushed to get to church. Remembers going at age 14. Current church & other religious activities Enjoys attending church services What is God like? A friend

Participant religious practices & faith perspectives Carol MMSE 19 Childhood church & Sunday school When little, went to church every Sunday Current church & other religious activities Goes to services every Friday morning –enjoys, and sometimes on the weekend too. But “I don't feel the same about it” (compared with the past). Stills prays, sometimes What is God like? Do you have an image of God? No I haven't. I used to.

Participant religious practices & faith perspectives Joanne MMSE 19 Childhood church & Sunday school I would say that I've had a faith for quite a few years from when I was only very small. Current church & other religious activities Goes to all the services and says has a strong faith What is God like? I need to answer that question I more or less need to give it a lot more thought than I can do in a few minutes.

Participant religious practices & faith perspectives Frances MMSE 10 Childhood church & Sunday school Did attend church as a child Current church & other religious activities Does not attend church, prays only to be with her twin. What is God like? “No, it’s all muddled up” This woman was very distressed about being separated from her twin

Participant religious practices & faith perspectives Maude MMSE 8 Childhood church & Sunday school “The earliest memories when I was going to, part of it school, and that was with, and of course then they come from different countries” “We were the Proddies” Current church & other religious activities Attends sometimes. Prays, “Yes, when I get the bible I read something in, and I think well that is this and that, and that, look at it. And I think well that is the bible and that is what is going to take me home.” What is God like? “I say I’ll ask God to tell me. See I ask him, he is there in all love and all the rest”

Participant religious practices & faith perspectives Joan MMSE 20 Childhood church & Sunday school Was converted in her 30s Current church & other religious activities Attends services. Reads the bible: “I am studying it all the time yes, all the time.” Prays often. What is God like? “I see him as a father”

Participant religious practices & faith perspectives Janet MMSE 21 Childhood church & Sunday school From childhood Current church & other religious activities “I try to pray, and you know, make things sort of possible for various things. …put myself in a position where I, talk with God, or read his words, you know, his messages in the Bible, and various things, and you know, you sort of can’t just wipe it off.” Does not attend any services because: “Well I don’t know what would be available” “I guess I felt a lot, along the way, that I was not good enough”. What is God like? “I think of God a lot …doing the work that he would be doing, wants to do, and wants people to look after and this sort of thing.”

Participant religious practices & faith perspectives Joy MMSE 12 Childhood church & Sunday school “Of course I went to Sunday school, No we were all a bit religious.” Current church & other religious activities Does attend sometimes, twice last month. What is God like? “Ah no. See in 3 years time I'll be a hundred. I know the feeling he gives us, and um I don't know. … No well I haven't really got full control of my mind.”

Participant religious practices & faith perspectives Josie MMSE 21 Childhood church & Sunday school Faith has been important as far back as she can remember Current church & other religious activities The good things in my life are going to mass every day of the week, um if I can fit it into the week by going to mass every day, I'll do so. What is God like? “Ah I firmly believe in God. The God that I believe in is a personal God, err who I can apply to with some of my minor err minor slips in memory or something like that. That does concern me because err in the last 2 or 3 years my memory has let me down completely.”

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?

Strategies for story telling for people who have higher cognitive function A spiritual lifeline The seasons of one’s life Reflection on: The river of life and my life journey Life’s turning points Healing and forgiveness –scars tell our stories (Morgan 2002) Reflecting on our own deaths

Applying findings to pastoral and spiritual care Spiritual reminiscence can be used even with severe dementia. Entertainment vs real connecting and engagement in small groups. Facilitating spiritual reminiscence: Have developed and run workshops throughout Australia, and overseas to more than 500 participants Learning package We have used spiritual reminiscence extensively, and it has been easy to link into the needs of these people; many have a long term religious foundation. What about the coming cohorts of older people, the Baby Boomers?