How spiritual care is provided in New Zealand dementia units
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- The document summarizes the results of a survey of 201 New Zealand dementia care units on their provision of spiritual care. - Key findings include that over half of respondents saw spirituality as important, though room for improvement was noted, particularly in staff education and dedicated chaplain time. - Spiritual needs were met through various activities, religious input, and resources, though assessment and policies were sometimes lacking. - The study provided insight but was limited by self-reported data; further research directly with residents and caregivers is needed to fully understand the implementation and effectiveness of spiritual care practices.
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How spiritual care is provided in New Zealand dementia units
- 1. 1
- 2. How are we doing? Stock-take of spiritual provision in New Zealand dementia units Dr. Chris Perkins July 2013 2
- 3. • 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 3
- 4. • 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 4
- 5. • 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 5
- 6. • 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 6
- 7. “ 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 7
- 8. 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 8
- 9. • 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 9
- 10. The participants 10 0 10 20 30 40 50 60 70 Profit Not for profit percent percent 57.4% 42.6% 227 responses, from 117 facilities = 58.2%
- 11. Participant’s role % 11 0 5 10 15 20 25 30 35 40 Owner Manager Charge Nurse/ Clinical Coordinator Chaplain/ spiritual advisor Diversional therapist Other
- 12. Years in job 12
- 13. “ 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 13 Definition of spirituality- given initially
- 14. Later asked what spirituality means to you personally? 14
- 15. Importance of spirituality to people in dementia unit 15
- 16. 16 In this dementia unit how important is spirituality over all?
- 17. 17 To what extent are spiritual needs of residents within your organisation being met?
- 18. 18 Is attending to spiritual needs part of your role?
- 19. Room for improvement? 19 •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
- 20. How are needs being met? • Policy and assessment • Resources • Activities • Religious input • Staff training and support 20
- 24. Activities 24 Uplifting events “ Activities personal to the dementia resident to feel a sense of self worth and belonging.”
- 25. Access to the outdoors 94.6% had access to the outdoors 25
- 26. 26 •Often 80.9% •Sometimes 7.1% Arts and crafts
- 27. 27 Often 92.9% Sometimes 7.1% Music and dancing
- 28. Religious input 28 • 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
- 29. Frequency of visits from community churches 29
- 30. 30 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
- 31. Support for staff in spiritual matters? 31 Available: 65.3% None: 34.2% D/K: 0.4% Who supports?
- 32. Personal benefit from working with people with dementia 32
- 33. 33 • 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?
- 34. 34 •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
- 35. 35 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
- 36. 36
- 37. 37
Editor's Notes
- The Health of Older People Strategy (2002) makes reference to “wellbeing”, defined in the glossary as“A dimension of health beyond the absence of disease or infirmity, including social, emotional and spiritual aspects of health.” Guidance for Improving Supportive Care for Adults with Cancer in New Zealand (Ministry of Health, 2010, pp. 44-45) contains a two page section on spiritual care. Further, in the most recent WHO statement on health promotion, the Bangkok Charter, it states explicitly that spirituality is part of an inclusive concept of health (WHO, 2005). Many residents’ care is government-subsidized via contracts between District Health Boards and care providers. The Aged Residential Care Contract (MOH2009) specifies that facilities will “assist the meeting of each Subsidised Resident’s social, spiritual, cultural and recreational needs” D 41c (p.34). and must develop policies on “Spirituality and counseling, including availability of chaplaincy” D5.4 q (p.35). The contracts are regularly audited, by review of policy documents, resident admission assessment data and care plans and interviews with residents, families and staff. Care staff are not expected to provide spiritual care although learning about “values and beliefs” is part of the mandated training programme. Most spiritual provision seems to come from local mainline church ministers visiting, but people from different denominations are available on call and families sometimes take their relatives out to church (C. Cumming auditor, personal communication, June 2, 2010). Also (Waldegrave 2009)(ACE training Packet)(Treaty of Waitangi 1840)
- Contacts were manager, charge nurse, spiritual advisor/chaplaindiversional therapist)
- Since we sent out survey to 4 contacts in each, some organisations are over represented. The spread of dementia units is about 32% NFP and 68% for profit. 23.8% of replies came from facilities with a religious affiliation- overall 24% of aged residential care is provided by religious organisations.
- Other respondents included caregivers, volunteers. 82% were Pakeha / NZ European and 12.5% Maori
- – 73% greater than 5 years and over 90 % more than two years
- From a list of possible meanings of spirituality, the mean number of choices per participant was 4.2. There was clearly a broad understanding of what spirituality might encompass. Other meanings included: acceptance, individuality, ritual, belonging/ community/companionship, generosity, joy, positive energy, self-empowerment, wellbeing, wholeness and more
- A range of comments from “depends on the person” to “ every resident has some need for spirituality , be it organised religion, new age or searching for meaning in life” ’ to “ never had a resident in Dementia Unit express any thoughts regarding spirituality” to “ I am frequently moved by responses of people with dementia.”
- Most people thought that spirituality was generally seen as important in the place where they worked
- Over 60% thought completely or a great dealSome of the comments are; “ often staff provide this without knowing” and “Attitudes and actions of staff rather than expression of beliefs express compassion and awareness of each individual.” “ We are very fortunate to have people sensitive to spiritual needs in unit.” Many commented that it depended on what the individual wanted. One person thought the staff on their unit should be more aware of residents’ spiritual needs.
- More funding, Karakia, more activities, better outdoor space
- Can’t analyse by type of organisation because of skew- having a spiritual policy is necessary for funding
- About 90% of respondents said this occurred at least most of the time
- These included bus rides and picnics, rugby, netball, art gallery , museum, church, concerts, entertainment – or “ by residents’ choice”Some commented that it was difficult to get residents out
- “Access to the outside every day with large garden, vege garden, bird aviary, chooks” “ sea views” , “rabbits”
- Visiting musicians and also play own instruments, sing-a-long (including hymns), karaoke, DVDs, CDs, line dancing, kapahaka,
- Only about 10% had visits from church members less than monthly.Pastoral caregivers have said to me that though they go and do a weekly service they don’t feel they have the time to sit or talk with people that is really needed.
- Adds up to more than 100,so it appears some people have more than one source of support
- “I work because I have to”“ Gratitude: seeing carers at work with love and compassion, glimpsing the presence of the person inside, a response to prayer/ music. All so profoundly moving.”“ I am more sensitive to others’ feelings. I stop and think before acting, I laugh more. I reflect on life and living and practise patience.”“ I like the challenge of understanding, de-escalating , establishing trust, humour.”“ I love working with dementia. They don’t judge me if I don’t do things perfectly.”“It is extremely rewarding”“ It is the most fulfilling experience of anything I have done. I receive as much as I give.”“I love my job more than words can explain.”
- Mason 1998) – ironic since there as very few Maori in residential care (100 in Auckland in 2008)OPAL Study 2008: Increasing dependency in residential care from 1988-2008; 20% survive 3 months and 40% less than 12 months after admission. Median length of stay is 1. years. Mean time in care is 2.5 years. OPAL 10/9/8 Older People’s Ability Level Census: Boyd,M.,Connolly, M and Kerse, N. et al University of Auckland.