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How are we doing?Stock-take of spiritual provision in New Zealand dementia units

Dr. Chris PerkinsJuly 2013

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• The Louisa and Patrick Emmet-Murphy Trust• The Selwyn Foundation• Dementia units throughout NZ

• Dr. Rod Perkins (Selwyn Foundation), Bronwen Peterken, Dr. Arden Corter (University of Auckland)

Acknowledgements

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• Background• Methods • Participants• Results

– What is spirituality and what does it mean?– Extent to which being met and possible improvements– How are needs being met?

• Policy / assessment• Resources• Activities• Religious input• Support and training

• Discussion

Overview

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• People with dementia are spiritual beings• Still have spiritual needs despite (or more so, because

of) cognitive impairment• It is possible to attend to spiritual needs of even those

with severe dementia• Spiritual care is part of holistic care

Background

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• Spirituality is seen as part of “wellbeing” in government policy documents

• Spiritual care mandated and audited in aged residential care

• Spirituality is a small part of training of caregivers in residential care

• Culture/spirituality increasingly taught in nursing training in line with Aotearoa /NZ bicultural policies

Spirituality in NZ Aged Care

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“ Residents of dementia rest homes are mobile and show confusion that requires specialist care in a secure environment.”

Specialist or psychogeriatric hospitals: “The residents have high dependency needs coupled with challenging or noisy behaviours.”

Generally GDS stages 6-7: moderately severe to very severe dementia (Global Deterioration Scale Reisberg 1983)

Categories of dementia care

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My questions

• What do staff of dementia units understand by “ spirituality”?

• Are spiritual needs met in dementia care?

• How are needs met?

Approved by Southern Ethics Committee. Ethics ref. 12 STH 12

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• Initial qualitative study in 2 dementia units

• A survey adapted from similar survey of NZ hospices

(R.Egan 2010)

• Survey mailed to 4 contacts in each of

all 201 NZ dementia units

• Analysis and collation of written responses.

Method

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The participants

 

Profit Not for profit0

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20

30

40

50

60

70

percent

percent

57.4%

42.6%

227 responses, from 117 facilities = 58.2%

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Participant’s role %

0

5

10

15

20

25

30

35

40

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Years in job

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“ spirituality includes beliefs, values, sense of meaning and purpose, identity and to some people religion” (Egan 2010).

It seemed important to start by having people think beyond religion

Definition of spirituality- given initially

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Later asked what spirituality means to you personally?

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Importance of spirituality to people in dementia unit

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In this dementia unit how important is spirituality over all?

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To what extent are spiritual needs of residents within your organisation being met?

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Is attending to spiritual needs part of your role?

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Room for improvement?

• Increased chaplain / spiritual advisor time or dedicated chaplain

• Improved staff awareness and education

• More staff, more volunteers, more resident-contact time

• Doesn’t need improvement• Better access to community

resources including churches: • Change in culture of facility ,

closer work with pastoral team• Chapel/ quiet room• Other denominations to be

available• Cultural resources

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How are needs being met?

• Policy and assessment

• Resources• Activities• Religious input• Staff training and

support

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Spiritual Policy?

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Spiritual Assessment?

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Spiritual resources available

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Activities

Uplifting events

“ Activities personal to the dementia resident to feel a sense of self worth and belonging.”

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Access to the outdoors

94.6% had access

to the outdoors

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• Often 80.9% • Sometimes 7.1%

Arts and crafts

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Often 92.9%

Sometimes 7.1%

Music and dancing

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Religious input

• Employed

Yes, 38.4% No,58.9% D/K 2.4%

• Voluntary

Yes, 67.9% No,29.9% D/K 2.3%

• To call in crisis

Yes 92% No,3.5% D/K 4.4%

Spiritual advisors

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Frequency of visits from community churches

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ACE training (mandated) 38.6 %Other: 51.5%Don’t know 7.9%

Other types on training included:• Yearly in-house training – some with chaplain• Local cultural advisors• Palliative care courses• Specific courses “Walking in Another’s Shoes”, “Spark of Life”

Staff education re spirituality

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Support for staff in spiritual matters?

Available: 65.3% None: 34.2% D/K: 0.4%Who supports?

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Personal benefit from working with people with

dementia

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• Surprising acknowledgement of importance of spirituality. NZ not an especially religious country and most respondents NZ born. ? Maori influence- whare tapa wha

• Broad definition of spirituality- in keeping with this attitude. Would it be the same with caregivers who are frequently new immigrants?

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• Self report• Results reflect positivity bias• These are not the caregivers- what happens on the ground

• Don’t know depth of assessment or extent of education

• More research directly with residents, families and caregivers

Limitations

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Questions: • How does this compare with others’

experience?• Are you surprised by the positive

response?• What would you do next to understand

what is really happening?

Thank you

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