elizabeth mackinlay centre for ageing and pastoral studies charles sturt university canberra,...
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Elizabeth MacKinlayCentre for Ageing and Pastoral Studies
Charles Sturt UniversityCanberra, Australia
www.centreforageing.org.au
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 reminiscenceSetting up the groupThe meeting placeMemory 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.
Response to Ultimate Response to Ultimate MeaningMeaning
Ultimate Meaning in Ultimate Meaning in LifeLife
Transcend loss/Transcend loss/disabilitiesdisabilities
To find final To find final Meanings: my story Meanings: my story
and God’s storyand God’s story
Find intimacy with Find intimacy with God and/or othersGod and/or others To find hopeTo 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 2000-2005 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 30-0 30 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 beliefsWhat 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 perspectivesMary MMSE 4Childhood 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 17Childhood church & Sunday school
Rushed to get to church. Remembers going at age 14.
Current church & other religious activitiesEnjoys 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 activitiesGoes to services every Friday morning –enjoys, andsometimes 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 19Childhood church & Sunday school I would say that I've had a faith for quite a few years
fromwhen I was only very small.Current church & other religious activitiesGoes to all the services and says has a strong faithWhat 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 10Childhood church & Sunday school Did attend church as a childCurrent church & other religious activitiesDoes 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 perspectivesMaude MMSE 8Childhood 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 activitiesAttends 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 30sCurrent church & other religious
activitiesAttends 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 perspectivesJanet MMSE 21Childhood 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 perspectivesJoy MMSE 12Childhood church & Sunday school “Of course I went to Sunday school, No we were all
a bit religious.”Current church & other religious activitiesDoes 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 perspectivesJosie MMSE 21Childhood church & Sunday school Faith has been important as far back as she can
rememberCurrent church & other religious activitiesThe 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?
• 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 careSpiritual 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?
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