1. FamilyCare Carer Support Services - West Hume Investigating Gaps for Rural Carers through Research Victorian Carer Services Network Best Practice Forum – August 2010 Carol Reid & Lynne Harmer

2. When does the caring role end? When does carer burden end? When do carer support services end? Introduction

3. “Exploring the role of the carer: at home and in the aged care setting” Introduction

4. More programs need to provide social interaction for carers and care recipients Hard to adjust when services stop after entry into Residential Aged Care Facility Introduction

5. Direct written quotes from the study “put him away” “let her down” Introduction

6. Appreciative of service assistance Services supported their caring role Appreciated quality of care at RACF Reciprocal care – giving back to aged parents Themes Introduction

7. “This group are no longer carers as they don’t receive a Centrelink carer payment” Introduction

8. Exploring the role of the carer: at home and in the aged care setting Primary Health Care Research Evaluation and Development Program (PHCRED) 2009 University of Melbourne School of Rural Health Shepparton. Funded by DoHA. Research Fellow: Carol Reid Carer Support Coordinator Familycare 19 Welsford St Shepparton 3630 Ph: 58 23 7081 creid@familycare.net.au Research Supervisor: Associate Professor Julie Pallant Director of Research and Graduate Studies Rural Health Academic Centre University of Melbourne jpallant@unimelb.edu.au

9. The Literature Key words searched: carer, burden, attitude, aged care, residential aged care facility Multiple carer studies Variety of concepts researched Range of countries

10. The Literature Review Caring role continues in the RACF Active and direct caring role maintained Continues over time Responsibilities are similar

11. Cross sectional (two groups) Quantitative Research Methodology Ethics approval under a minimal risk application by the School of Rural Health Human Ethics Advisory Group at the University of Melbourne (HREC number: 932313.1)

12. To examine and compare carer burden and role attitude in the two settings of Community and Residential Aged Care Facility (RACF) Aim

13. Carer Burden is the subjective belief that current and future resources are inadequate to meet role demands 1 Definition of Carer Burden 1 O’Rourke N., Tuokko H., Psychometric Properties of an Abridged Version of the Zarit Burden Interview Within a Representative Canadian Caregiver Sample, The Gerontologist, 2003; 43(1): 121-127

14. Postal questionnaire West Hume Region (5 LGA’s) Participant criteria Participant sources Method

15. Measures: Zarit Burden Interview (short version ZBI) 2 Attitude to Caring Role Scale (ACRS) Specifically developed for this study 2 Bedard M., Molloy W., Squire L., Dubois S., Lever J., O’Donnell M. The Zarit Burden Interview: A New Short Version and Screening Version’, The Gerontologist, 2001; 41(5): 652 - 657

16. Measures Zarit Burden Interview (ZBI Short Version) 3 12 items Good reliability Scale: 0 (never) to 4 (nearly always) Range 0 - 48 Score 16 and above indicates high burden

17. Measures Developed for this study Example questions My role as a carer adds meaning to my life My role as a carer is a worthwhile role Attitude to Caring Role Scale (ACRS)

18. 18 Total = 90 Respondents Community setting 61% (n = 55) RACF setting 39% (n = 35) Male 26% (n = 23) Female 74% (n = 67) Results

19. Reasons for care: Cognitive Dementia, Alzheimer's disease, memory loss, confusion Loss of independent self care Poor mobility, falls, incontinence, arthritis and joint problems, frail and frail aged

20. Results Carer Burden – Zarit Burden Interview totals Higher burden present in both groups of carers No statistically significant difference between burden scores for carers in the Community setting and carers in the RACF setting.

21. Results Attitude to Caring Role Scale – (ACRS) High positive attitude to the caring role across this group of carers

22. Results “Do carers in the Community setting and carers in the RACF setting differ in their attitude to the caring role?” A small but statistically significant difference Higher positive attitude in RACF (median = 20) Community setting (median = 18)

23. Results “Is there a relationship between levels of Carer Burden and the Attitude to the Caring Role?” Pearson’s correlation: r = -.20 (p =.08) Very weak, non – significant association between burden and attitude to the caring role Higher levels of burden do not necessarily lead to negative perceptions of the caring role

24. Results “Is there anything else you would like to share with us about your role as a carer?” Main themes: 1. Service system 2. Rural issues 3. Reciprocal care 4. Family Issues 5. Time demands 6. Carer Voice 7. Loss/grief/guilt 8. Relationship

25. Results Rural Issues Travel times Long waiting lists Availability of transport options Lack/limited services

26. Results Carer Voice “Thanks for your interest” “Thanks for asking” “Hope this helps with carer studies”

27. Results Time demands Limitations on life Life on hold Multiple chores, not just direct care; banking, transport, shopping, errands, appointments, travel time, visiting

28. Results Service system Fragmented & difficult to navigate Lack of knowledge, advice, awareness of services Equity and access Management of services not local

29. Discussion This research was unique The Caring role continues after placement Converting data into a meaningful response

30. Formulating a service response 1. Best Practice 2. Pilot Project

31. Responding to unmet carer need Liaison with service providers and the community to promote supports available for carers Best Practice

32. From the study 91% (n=82) of carers saw their GP as the initial source of support Referrals to Carer Support from GP’s limited Carers find services difficult to navigate and fragmented Improve Liaison

33. ‘Caring away from Home’ Pilot project

34. First Step: Flexibility of service guidelines to be inclusive of carers in the RACF setting Access for these carers to current activities Pilot project

35. Relieve carer burden with emotional and peer support and education Social Connectedness Restructure a new caring role Project Aim

36. Project Outline Collaborate with local RACF’s Access to planned carer outings, information and education days

37. Project Outline Formation of a Support Group Carer ‘Connection Worker’ to visit RACF’s Explore rural carer needs and links to community options

38. Equity in carer support services Encourage mentoring Demystify and de-stigmatise entry into aged care Evaluation of project Project Outcomes:

39. Conclusion Lynne's 3 questions 1. When does the caring role end? 2. When does carer burden end? 3. When do carer support services end?

40. Conclusion When does the value of the caring role end?

41. Acknowledgements Supervisor: Associate Professor Julie Pallant, Director of Research Studies, University of Melbourne, School of Rural Health Familycare Carer Support Services West Hume RACF’s West Hume Carer Support Groups Project Funded by PHCRED & DoHA