1 The link between spirituality and€¦ · •Overwhelm with Problems – 12/24 said they had ......

1The link between spirituality and

well-being in people with dementia

Kirstin Robertson-GillamPhD candidate MA (Hons ) MCouns BA(Psych) RN RMT

The link between The link between spirituality and spirituality and

wellwell--being in people being in people with dementiawith dementia

Kirstin RobertsonKirstin Robertson--GillamGillamPhD candidate MA (Hons ) MCouns BA(Psych) RN RMTPhD candidate MA (Hons ) MCouns BA(Psych) RN RMT

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• A transcendent meaning about life

• Can be expressed through religion, nature, energy, belief in all good, importance of family and community

•The essence of personhood expresses individual uniqueness

• Personal beliefs and values profoundly effect how a person copes with illness.

Definition of Spirituality

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• Creativity is associated with meaning and purpose and enhances spirituality

(Kerka, 1999)

• Creativity in later life optimizes a person’s functioning in the face of growing constraints of old age

(Nakamura & Czikszentmihalyi, 2003)

Creativity linked to Spirituality

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• To achieve this spiritual

dimension, there has to be a meeting of …The carer’s spirituality… and …The person with dementia’s spirituality.

• It is our spirituality which reaches out and connects in the most meaningful way.

Spiritual dimension

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• Sets of beliefs, stories and practices that respond to a basic human desire to find meaning and purpose in an integrated way

(Shea 2004)

• A constructed sense of self is dependent on the actions and interactions that a person maintains in a larger social world

(Daaleman, 2004)

Spiritualities as Self Identity

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“Reminiscing and expressing ourselves through creative activities can help us to experience the reality of interconnectedness and to string together, into a coherent form, the pebbles, pearls and jagged rocks of our own unique life experiences.”

(Sylvia May, Diversional Therapist, 2005)

Life stories and reminiscence

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• A randomized controlled trial

• 41 participants with average Mini Mental Scores of 13.6

• Age range 74 – 93 years, living in hostel care

• 15 psychosocial interventions of choir and reminiscence over 7.5 weeks.

Research: Choir therapy reduces depression in people with dementia

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Results indicated that:

• People with dementia experience life through their emotions and have the capacity for a rich inner life.

• People with dementia can express their personhood through creativity and spirituality

• Choir singing and reminiscence decrease depression in people with dementia.

Results of Research

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Cornell scale of depression in dementia

Results of Research: Depression

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Levels of responsiveness -- communication

Results of Research: Interventions

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Levels of responsiveness -- feelings

Results of Research: Interventions

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Levels of responsiveness -- mood

Results of Research: Interventions

13 SIWB scale (adapted from Daaleman & Frey, 2004)

Self-efficacy

1 What do you do to help yourself each day?

2 Can you finish what you start each day?

3 Do you have any problems?

4 Do you feel that you have control over your life?

Life scheme

5 What do you live for?

6 How do you feel about your family and friends?

7 Do you feel empty or lonely inside?

8 How do you feel about your life now?

14 Spirituality Index of Well-BeingPre-intervention results

1 = Minor issue

2 = Medium issue

3 = Big issue

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Pre Self Efficacy themes• Helplessness

Loneliness/Yearning:

“I’d rather be in my own place”

Helping Self:

“Living takes a lot of control”

Self Identity:

Loss of “normal self”

Limitations imposed by dementia

Spirituality Index of Well-Being

16Pre Self Efficacy themes• Incompleteness

Hopelessness

“It’s not important because I only get upset because I’m not well enough”

Helping Self:

“I feel myself I’m useful”

Process of doing versus finishing tasks:

“Doesn’t matter to do things rather than finish them”

Spirituality Index of Well-Being

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Pre Self Efficacy themes• Overwhelm with Problems

Financial: “My wife/daughter takes all the money”

Hopelessness: “There’s someone who rules over you”

Personal Insight: “I’m shrinking”

Shadowing: “ I follow her”

Resignation: “Not a great deal I can do about it”

Spirituality Index of Well-Being

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Pre Life Scheme themes• Purposelessness

Losses: husband/wife/daughter

Being proactive

Doing good deeds and usefulness

Being creative: “Can’t sing anymore”

Don’t know

Resignation: “Everything’s finished”

Spirituality Index of Well-Being

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Pre Life Scheme themes• Meaninglessness

“Don’t know any”

Family of origin as meaning

Broken relationships

Usefulness

Lack of activity

To reproduce gives meaning

Spirituality Index of Well-Being

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Pre Life Scheme themes• Emptiness

“It’s there all the time. Got to accept it”

“Empty because I used to be a singer”

“ I worry about living here”

“ My brain’s not working too good”

Angry about abusive marriage.

Lack of privacy in hostel living removes self identity and gives emptiness.

Spirituality Index of Well-Being

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Learning new information

Spirituality Index of Well-Being

22 Spirituality Index of Well-Being

Expressing normal self

23 Spirituality Index of Well-Being

Self efficacy

24 Spirituality Index of Well-Being

Expressing humour

25 Spirituality Index of Well-BeingPost-intervention results

1 = Minor issue

2 = Medium issue

3 = Big issue

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Post Self Efficacy themes• Helplessness

•Choices 15/24 felt more empowered to make own choices

•“Choir makes you feel like you were still in the world”

• Helpful to others and being active

• “What’s the good of being wishy-washy?”

• “I try to help myself as much as possible”

Spirituality Index of Well-Being

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Post Self Efficacy themes• Incompleteness

“It’s important to finish what I start”

Helpless/self identity: “Embarrassing to have a shower with someone watching me because I’m Welsh”

“ I don’t like loose ends”

“ Just go with the flow”

“ I like to see everything done and then go out”

Spirituality Index of Well-Being

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Post Self Efficacy themes• Overwhelm with Problems – 12/24 said they had

no problems or overwhelm.

Loneliness – miss family, life before dementia

Try to help self as much as possible

“Singing overcomes negative feelings”

Spirituality Index of Well-Being

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Post Life Scheme themes• Purposelessness

Originality: “ Got have your own purpose and own reason for doing it”

Family gives purpose

Activity gives purpose: “ I like to pick up your ornaments after our talking group”

Loss of career expectations

“Not good enough”

Spirituality Index of Well-Being

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Post Life Scheme themes• Meaninglessness

Name, culture and country of origin gives meaning and self identity

Being “me-myself” gives self identity

Reincarnation: “I’m coming back as a singer”

Helpfulness and politeness to others gives meaning

Spirituality Index of Well-Being

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Post Life Scheme themes• Emptiness

Sadness/ Distancing: “I turn off so it doesn’t hurt”

Regrets about not having had a good education

Stress overload (PTSD from war trauma)

Loneliness: Wants to re-marry so won’t be lonely

Empty at night

Spirituality Index of Well-Being

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Post Life Scheme themes• Emptiness

Helpfulness helps emptiness

Being active helps emptiness

Grief and loss – misses partner/family

“ I don’t wish I was dead anymore”(choir member)

Spirituality Index of Well-Being

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• A holistic approach to physical and mental health issues

• Requires listening to the individual and maintaining their rights

• An awareness of the effects of care practices on personhood

• Requires understanding of one’s own personhood and spiritual needs first.

(McDonald, 2008)

Spiritual care and person-centred care

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“The contributions we make to spiritual aspects of care and the spiritual nourishment we receive in return, occur both in the course of structured programs, (during interactions) and at spontaneous moments when the time is ripe and we must seize it.”

(Sylvia May, Diversional Therapist, 2005)

Conclusion

35 Conclusion“God made people because he loves stories.”

(Rabbi Harold Kushner, 1981)

We all have our stories that make us We all have our stories that make us unique and special. unique and special.

Psychosocial activities can reach into Psychosocial activities can reach into the creative centre of the spirit where the creative centre of the spirit where

we live and have our beingswe live and have our beings..

36 Follow-up

Email

kirstin@optusnet.com.au

37 ReferencesAntonovsky, A. (1987). The structure and properties of the sense of coherence scale. Social Science & Medicine, v36, March 1993, p.725-33.

Bandura, A. (1994). Self-efficacy. In V.S. Ramachaudran. (ed). Encyclopedia of human behaviour. v4, p71-81. New York, Academic Press.

Daaleman, T. & Frey, B. (2004). The spirituality index of well-being: A new instrument of health-related quality-of-life research. Annals of Family Medicine, v2, no5, September/October 2004.

Daaleman, T. (2004). Religion, spirituality, and the practice of medicine. Journal of the American Board of Family Practice, v17, no5, September/October 2004.

Daaleman, T., & Elder, G. (2007). Family medicine and the Life Course program. Journal of the American Board of Family Practice, v20, no1, January/February 2007.

Kushner, H. (1981). Why bad things happen to good people. USA, Random House.

McDonald, T. (2008). Professional nursing in the aged care industry. Australian Catholic University. [Unpublished PowerPoint].

Poll, J.B. & Smith, T.B. (2003). The spiritual self: Toward a conceptualization of spiritual identity development. Journal of Psychology and Theology: Summer 31,2: ProQuest Religion. USA.

Shea, J. (2001). Integrating spirituality into health care. Second Opinion, no5, March 2001. Chicago, Park Ridge Center.