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?