Carers Health Survey Full Results Dr Finian O’Brien Irish College of Psychiatrists

1. Carers Health Survey Full Results Dr Finian O’Brien Irish College of Psychiatrists November 2009

2. Background to Study • Very few Irish studies of carer experience in Ireland • Limited by: • Focusing on carers of those people suffering from particular problems • Small numbers • Sample bias Nevertheless, found that carers were concerned about their own health and lack of financial supports available.

3. Background to Study International Perspective • WHO (Europe) Report on “Lay Participation in Healthcare” • Recommended: 1. “Research should find the common features of lay groups in different countries and help them to become more effective. 2. Objective research should be fostered which gives comparable data for different societies. 3. There is a need for research into lay participation in professional decision-making”

4. Background to Study International Perspective • Princess Royal Trust (UK): “Carers Health Survey” • 2002-2003: collected 1066 self-completed questionnaires by carers. • Reported: • Carers health and quality of life significantly compromised by caring role. • Many carers did not have in place appropriate social, health and financial structure required to adequately carry out their role.

5. Background to Study • Collaboration between Public Education Sub-Committee of Irish College of Psychiatrists and Carers Association. • Aims: • To obtain an accurate reflection of what lay carers experience while looking after someone with a mental and/or physical disability or other condition. • To form a clear picture of the issues, concerns and support required for voluntary carers. • To use the results so-obtained to influence forward planning of service delivery to carers by all organisations involved in such care-provision.

6. Study Method • Questionnaire designed to examine the experience of lay carer and effects (if any) on their physical and mental health initiated by PESC and finalised in collaboration with Carers Association. • Research Proposal submitted to Research Ethics Committee of the Royal College of Surgeons in Ireland for review and approved. • A random sample of 10,000 carers identified from Carers Association national database of carers. • April 2008: Survey sent to 10, 000 carers with return pre-paid SAE. • Free-phone help-line set up by Carers Association for carers who may wish to discuss any of the issues raised in the survey.

7. Results Survey collection end: June 2008 • 1990 responses received (20% response rate). • Data entered manually into “Survey Monkey” (online survey management). • Data downloaded as Excel spreadsheet and converted into SPSS (computerised statistical package) for analysis. • Results presented as percentages of respondents, with confidence intervals, to allow extrapolation of data to the wider population of carers.

8. Section A: The Person(s) Cared For (PCR) Q1: How many people do you care for? Q2: Average age of main person cared-for (standard deviation) years: 62 (28) years; Range: 1-102 years. Second person: 58 (30); Range: 2-97 years. Q3: Gender:54% female(CI: 51.3, 55.8) 46% male (CI: 44.0, 48.6)

9. Q4: Relationship to cared-for person: Q5: Do you live with the cared-for person?

10. Q6: For those not living with PCR, how often they visit to care for them. Q7: The medical/mental condition of PCR

11. Q8: How many others are living in the household of the person being cared-for?

12. Q9: Do other persons in the cared-for person’s household provide care/support for them? And, of those who do help/support Carer:

13. Summary of Information about Person being Cared-for • Slightly more likely to be female • Average age 62 years • Most likely to be parent of Carer and living in Carer’s home • The vast majority of those carers not living with person being cared for visit them daily • Most have a medical illness requiring need for caring, but mental illness also very prevalent. • More than half of those being cared-for had no-one else living with them (other than their carer). - of those who had some-one else living with them, most (65%) did not/were not able to provide care to them. - of those living with them who could help, males were more likely to (be able to) help out.

14. Section B: Questions about the Carer Q1: Marital Status: Q3: Gender:

15. Q2: Age Group Or, alternatively: 0.6% of carers under 25 78.7% of carers between 25-64 years 20.6% of carers over 65 years

16. Q4: Employment Status:

17. Q5: Ethnic Descent:

18. Q6: Geographical Distribution of Carer sample Every county in the Republic had at least one respondent Ulster: (Donegal, Monaghan, Cavan) = 0.9% (0.5, 1.5) Munster: 35.8% (33.7, 38.0) Leinster: 55.1% (52.8, 57.3) Connaught: 8.2% (7.0, 9.5)

19. Q7: Length of Time Being a Carer Q8: Hours per week spent Caring

20. Summary of Information about Carer • Vast majority of carers female and married/cohabiting with their husband. • Over half between 45-64 years of age; One fifth are over 65 years. • Most are retired and over one fifth are unemployed. • Almost 40% of all Carers have carried out caring role for between 1 and 5 years; 57% for over 6 years. • Vast majority (80%) of Carers spend more than 35 hours per week caring.

21. Carer Role & Health

22. Q9: Tasks done on a regular basis while caring and whether they cause ill-health?

23. Q10: How the Carer described their own health 71.3% described their health as “very good” or “quite good”. 28.6% described their health as “not very good” or “not at-all good”

24. Q11: Diagnosed Illness in Carers and whether Carer role caused or worsened their condition?

25. Q11: Diagnosed Illness in Carers and whether Carer role caused or worsened their condition?

26. Q12: Experiences of the Carer while carrying out their role

27. Q13: What Carers worry about:a. The person they care-for

28. Q13: What Carers worry about:b. Themselves Q14: Has the Carer ever wanted to “harm” or neglect the person cared-for?

29. Summary of Information about Carer Role & Health • Most Carers (71%) reported their health as “quite-good”* or “very-good”, but well-over half experienced being mentally & physically “drained” by their role. • Regular carer tasks most reported to cause ill-health reported as: - dealing with verbal/emotional abuse - coping with bizarre/inconsistent behaviour - getting up in the night - dealing with physical aggression • Over half of Carers had a medical problem (most frequent being back injury) and problems most reported to be worsened by caring reported as: - backache - bruising/cuts - peptic ulcer disease • Over half of Carers reported a significant mental health problem, the most frequent being anxiety disorder. Anxiety and depressive disorder reported as the medical conditions most highly associated with their caring role. • Most carers worried how the person being cared-for would cope if they could not care any longer due to illness/death and that they had no time for themselves due to caring.

30. Carer Experience of Services

31. Q15: Professionals/Organisations experienced in relation to caring

32. Q16: Problems experienced by Carers in relation to services

33. Q16: Problems experienced by Carers in relation to services

34. Q16: Problems experienced by Carers in relation to services

35. Q17: Do you know whether person you care-for has opportunities for respite care? If yes, what are those opportunities?

36. Q18: The help Carers Receive

37. Summary of Information about Carer Experience of Services • Carers reported that the services which provided most ongoing support to them are G.P., care workers, Carer/charity organisations and community PHNs/religious groups. • Vast majority (74%) of respondents reported that services made available to them for their role as carer are inadequate. • 12% of carers reported that they could not access services. • Just over half of Carers knew whether the person cared-for has opportunities for respite care. The availability of respite was variable. Over one in five respondents reported that the person cared-for refuses to go into respite care. • While at least half of Carers reported not receiving any extra help with caring, the average amount of weekly help received by Carers is: • - 4.1 (SD 11.3) hours (paid-for by Carer or person cared- • for); median 0 • - 6.8 (SD 10.0) hours (free or provided by others); median 4 • Hrs.

38. What would help Carers?

39. Q19: “How many extra hours per week would be the minimum you think you would need to improve your own health 62.1 response rate to this question Min extra hours per week: Average (standard deviation): 9.6 (13.8) hours Median: 6.0; Range: 0-168

40. Q20: What type of support or help would improve your own health?

41. Q21: Which of these statements do you agree with?

42. Q22: Financial/Tax benefits received by Carer and person cared-for Note: The old age pension was frequently reported. However it was not reliably specified whether the Carer of the person being cared-for (or both) was receiving this.

43. Q23: Type of Transport mostly used by Carer

44. Q24: “Is there anything else of relevance to the issue of your health & caring not covered in this questionnaire?”

45. Q24: “Is there anything else of relevance to the issue of your health & caring not covered in this questionnaire?”

46. Q25: “Have you ever received training for your role as Carer?” “If yes, what training did you receive?”

47. Q26: “What kind of training would be of help to you, if it were available?”

48. Summary of what Carers say would help them carry out their role • At least 9.6 extra hours per-week to improve their own health • Better and more flexible back-up support services, especially home-help & respite care to allow them to have a break. • More financial support • More understanding and “joined-up thinking” between agencies relating to caring • Psychological support • The vast majority of carers had never received training to help them carry out their role and would like training made available to them. • Most carers believe that people do not understand what is involved in caring and that there should be more publicity about caring.

49. Discussion • This is the first study in Ireland and UK to examine the impact of lay-caring on the mental & physical health of Carers, using a random sampling method. It is also the largest study of its kind to be carried out in Ireland & UK on Carer experience • Highlights the real challenges faced by Carers in their role and the effects these have on their mental and physical health • Provides insights into what changes Carers would like to see addressed in present & future planning of services

50. “ Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow“….