Elizabeth MacKinlay Centre for Ageing and Pastoral Studies www.centreforageing.org.au

1. Pilgrims in a Strange Land: Aging, Illness and PersonhoodFinding ways to connect with people with dementia:A spiritual approach Elizabeth MacKinlay Centre for Ageing and Pastoral Studies www.centreforageing.org.au

2. Pilgrims in a Strange Land: Aging, Illness and Personhood Title for today’s seminar taken in part from book by Rev’d Malcolm Goldsmith. Goldsmith, M. (2004) In a strange land … People with dementia and the local church. Southwell, UK: 4M Publications. Goldsmith, M. (1996) Hearing the Voice of People with Dementia: Opportunities and Obstacles. London: Jessica Kingsley Publishers.

3. In a strange land: What’s it like to be diagnosed with dementia? The type of dementia is probably irrelevant in importance as it is the effect of the disease on the person and their family that is central in importance. Dementia is still a feared condition and perhaps fear is one of the greatest barriers to living a quality life. Too often people with dementia are shut off from others in the community and may be even isolated within their own families.

4. Dementia as a topic of conversation For the first time in my professional career as a nurse, I was challenged to meet with Christine as a person first and as someone with dementia, second. With Christine, • I was able to talk freely about dementia, we named it, • we focused on the meaning of it for her. • Christine was the centre of our conversations. • Important to be a person journeying with her, as a partner, not an expert. The role that fitted best was pastoral care. An intentional friendship with Christine. If person-centred care is properly practised, then it too will serve well as a model for care.

5. Issues for people with dementia, following diagnosis • Fear of the future • “I remember my aunt had dementia and I don’t want to end up like her” • Loss of sense of self worth • Should I tell others? • How will people treat me, now I have Alzheimer’s (or any type of dementia)? • Can I still drive? • Will I need to move into assisted care?

6. Things that people with dementia experience • Loss of memory • Inability to find the right words • Needing time to respond to others • Feeling that loved ones take over their lives (in protection, but perceived as loss of control) • Will I still know God? (but what if I am a vegetable?)

7. What does it mean to be a person with dementia? • Still a person • Made in the image of God What does it mean to be made in the ‘image of God’? • It is to be formed after the character or likeness of God • It means to be known and loved by God • To have the potential to be in relationship with God and others

8. Ways of responding and interacting with people who have dementia • If we say that all are made in the image of God that will guide who we are as we care and how we respond to those who have dementia However, • If we do not see people as being made in the image of God, then we need to search for a means of respecting, loving and caring for the other: that other might be me one day – how would I want others to respond to me if I have dementia. • There is a moral imperative to love and care, even if we do not have a religious faith

9. Questions • Who am I as I travel into this disease? • As Christine asked: “Who will I be when I die” • How long do I have before I lose control? • Will I know that I am losing it? • What does my life mean now that I have dementia?

10. Spirituality and Religion S P I R I TU A L I T Y- Ultimate Meaning Mediated through Creation/creativity: nature, sea, mountains, gardens, work – human imagination Relationship: intimacy with others and/or God Religion: Worship Prayer reading of Scripture meditation The arts: music, poetry, art, drama, dance MacKinlay 2006 modified

11. Spirituality: A continuing journey in dementia To find final meanings Transcend loss/ disabilities Response to Ultimate Meaning Ultimate Meaning in Life Find intimacy with God and/or others To find hope MacKinlay 1998 modified

12. Seeing ‘whole’: narrative and ageing In dementia: • Low levels of cognition, translated to mean loss of sense of imagination, of being no longer able to respond to story or to connect with meaning. • We are whole beings, and cognition is a part of the make up of being human, but not all that there is! • Narrative links life from birth to death: this is the self in narrative mode.

13. Story and connections The person - the family - the community - the faith • Our closeness in the connections of the human and divine stories gives us identity, and thus purpose and meaning in our lives. • In secular settings, story and identity are connected too. • Much of our focus on story is associated with memory. • The ability to remember our story lies at the heart of self-knowledge and personhood.

14. Connecting with people with dementia- spiritual or activity programs? • Found: Significant reduction of depression levels in the pastoral care groups (p<.05) • That this project used pastoral care, prayer and meditation, art and music to connect deeply with people with dementia did not guarantee that connections would be made • Pastoral care and the prayer & meditation programs showed more interaction within the groups than the art and music programs. • But still variations between groups based on facilitator communication style. • The art and music programs did not go to the depths that were found in the spiritual reminiscence.

15. What might restrict effective communications? • Knowledge base of the facilitators about the nature of dementia and ways of communicating with these people. • Learning about person-centred care may not be the same as doing person-centred care. • Learning new skills to facilitate an art, or music group may interfere with existing person-centred skills. • Facilitation may become outcome orientated rather than process orientated. • Spiritual reminiscence worked well because the process focuses on story, their own story!

16. What works best for communicating with people who have dementia? • Being present to the person • Avoid concrete questions that will require the person to take in facts and respond to these. • Asking questions about meaning • Connecting spiritually and emotionally • Allowing time for the person to respond – a long time. • Allowing periods of silence. • Calling the person by name, and then pausing, before asking them the question.

17. Outcomes of spiritual reminiscence work include • finding meaning and • hope in the face of increasing vulnerability.