Quality of Life in Carers of Older People with Incontinence in Italy

1. Global Forum on Incontinence, Copenhagen, 24-25 April 2012 Quality of Life in Carers of Older People with Incontinence in Italy Ipsos project team: Jon Weeks, Gemma Maurimootoo, Alexander Parker & Freya Benson Presented by Giovanni Lamura, INRCA, Italy (g.lamura@inrca.it)

2. Objectives Methodology Content Key findings Discussion Conclusions & recommendations

3. Research Objectives Establish the extent to which incontinence impacts on carers’ quality of life Key Objective Specifically • To focus on the social, emotional and physical impact for carers of someone with incontinence versus those caring for someone without incontinence Without incontinence With incontinence VS.

4. Methodology / 1 The qualitative research presented before has highlighted a link between caring for incontinent persons and experiencing a poorer quality of life(QoL). This research is now being conducted to gain a quantitative understandingof this link. In order to make a realistic comparison, the quality of life has been assessed amongst those caring for someone suffering from incontinence (case group), versus carers of someone not suffering from incontinence (but still presenting at least one other condition) (control group). THE HYPOTHESIS:“There is a severe impact on the quality of life of carers looking after someone with incontinence.”

5. Methodology / 2 • Fieldwork country: Italy • Data collection: Online • Fieldwork dates: 5th- 15th Dec 2011 • N=300 respondents per group (case & control) • Locations: Metropolitan 29%, Urban 59%, Rural 12% Fieldwork

6. Methodology / 2 • Carer must: • be 18 + • provide care to a relative for at least 10 hours per week • Relative must: • Be aged 60 + • Suffer from a condition for which they require care assistance • Not live in a nursing/care home • (If ‘case’) suffer from mid/heavy incontinence • Fieldwork country: Italy • Data collection: Online • Fieldwork dates: 5th- 15th Dec 2011 • N=300 respondents per group (case & control) • Locations: Metropolitan 29%, Urban 59%, Rural 12% Sample Fieldwork

7. Methodology / 2 • Carer must: • be 18 + • provide care to a relative for at least 10 hours per week • Relative must: • Be aged 60 + • Suffer from a condition for which they require care assistance • Not live in a nursing/care home • (If ‘case’) suffer from mid/heavy incontinence • Fieldwork country: Italy • Data collection: Online • Fieldwork dates: 5th- 15th Dec 2011 • N=300 respondents per group (case & control) • Locations: Metropolitan 29%, Urban 59%, Rural 12% Length: 25 mins Sections on: • Relative’s details and conditions • Details of caring • Emotions experienced by carers • Attitudes of carers and impact of their role on them • Reasons for providing care • Availability of information and support • Demographics Questionnaire Sample Fieldwork

8. Profile of carers is evenly matched in terms of gender, age, length of care & relationship to relative carer’s Gender Statistical significance (2-tailed testing): **: p<.05

9. Profile of carers is evenly matched in terms of gender, age, length of care & relationship to relative carer’s Gender carer’s Age Statistical significance (2-tailed testing): **: p<.05

10. Profile of carers is evenly matched in terms of gender, age, length of care & relationship to relative carer’s Gender carer’s Age Length of Care Provision Statistical significance (2-tailed testing): **: p<.05

11. Profile of carers is evenly matched in terms of gender, age, length of care & relationship to relative Relationship to relative carer’s Gender carer’s Age Length of Care Provision Statistical significance (2-tailed testing): **: p<.05

12. Also profile of relatives was evenly matched – but more conditions amongst incontinence sufferers Relative’s Gender Relative’s Age Statistical significance: **: p<.05

13. Also profile of relatives was evenly matched – but more conditions amongst incontinence sufferers Conditions of relative Relative’s Gender Relative’s Age Statistical significance: **: p<.05

14. Also profile of relatives was evenly matched – but more conditions amongst incontinence sufferers Conditions of relative Relative’s Dependency** Relative’s Gender Relative’s Age Hired help** 88% of cases helps with changing always or sometimes! Statistical significance: **: p<.05

15. How is Quality of Life Measured? • In this study consumers were asked to describe their physical & emotional wellbeing over the last two weeks. Their answers were then weighted and a QoL mean score was calculated using a scale from 0 to 25 whereby a higher score signifies a better quality of life • The QoL measure in this study is reflective of that used in the ‘Warwick Edinburgh Mental wellbeing scale’ Worse Quality of life Better Quality of life 0 10 15 20 25

16. KEY FINDINGS

17. Carers of relatives without incontinence have a significantly better QoL, as a result of a variety of factors

18. Carers of relatives without incontinence have a significantly better QoL, as a result of a variety of factors

19. Carers of relatives without incontinence have a significantly better QoL, as a result of a variety of factors

20. A normal distribution of results is seen across the sample for the QoL question ➜ data validity Frequency of QoL scores across total sample (both groups) % of responses (total sample) Trend of response distribution Average quality of life score across both groups:13.6 Base: N=609

21. Carers of relatives without incontinence have a better QoL Carers of relatives with incontinence (case) 13.2 Worse Quality of life 10 20 15 Better Quality of life Carers of relatives without incontinence (control) 14.0* Statistical significance: *: p<.1; **: p<.05 Q16A. How would you describe your physical and emotional condition over the last two weeks?

22. Quality of life deteriorates as the carer and/or the relative gets older or the first spends more time providing care Statistical significance: *: p<.1; **: p<.05 ^Caution: Very small base size

23. Quality of life deteriorates as the carer and/or the relative gets older or the first spends more time providing care Statistical significance: *: p<.1; **: p<.05 ^Caution: Very small base size

24. Gender difference in the carer-sufferer relationship has an impact on the QoL of male carers of female relatives with incontinence Statistical significance: **: p<.05

25. Dependency of cared-for relative shows some directional differences ^: Caution: Very small base size Statistical significance: *: p<.1; **: p<.05

26. Cyclical nature of QoL for carers of relatives with incontinence: powerless ➜ acceptance ➜ burden QoL for carers of relatives with incontinence over time QoL for carers of relatives with incontinent over time Acceptance (14.27) (n=122) ** Burden (12.12) (n=95) Powerlessness (13.02) (n=87) Q1. For how long have you been taking care of[INSERT RELATIVE FROM S5D]?Base n=304 Statistical significance: **: p<.05

27. Cyclical nature of QoL for carers of relatives with incontinence: powerless ➜ acceptance ➜ burden QoL for carers of relatives with incontinence over time QoL for carers of relatives with incontinent over time Acceptance (14.27) (n=122) ** Burden (12.12) (n=95) Powerlessness (13.02) (n=87) Q1. For how long have you been taking care of[INSERT RELATIVE FROM S5D]?Base n=304 Statistical significance: **: p<.05

28. Cyclical nature of QoL for carers of relatives with incontinence: powerless ➜ acceptance ➜ burden QoL for carers of relatives with incontinence over time QoL for carers of relatives with incontinent over time Acceptance (14.27) (n=122) ** Burden (12.12) (n=95) Powerlessness (13.02) (n=87) Q1. For how long have you been taking care of[INSERT RELATIVE FROM S5D]?Base n=304 Statistical significance: **: p<.05

29. Rank of factors affecting carer’s QoL Worse Quality of life Living SituationLives 30 minutes away from relative (9.76^) Being InformedNot very well informed about incontinence care (11.14^) Level of SupportNo support or information from health system (11.62^) Duration of CareCarer has been caring for 4-5 years + (12.12) DependencyCaring for someone severely dependent (12.15) Relative’s AgeCaring for someone 90 years + (12.70^) Carer’s AgeCarer is aged 50 years + (12.78) 8. Cross GenderMale carer of a female relative (12.95^) 9 Living Situation 10 11 Being Informed Level of support 12 Length of Care Dependency End user Age CGR Age Cross Gender 13 Better Quality of Life Variables have been sorted in ascending order according to their QoL score (low to high). Although this can give some indication of hierarchy it cannot be considered absolute, as we cannot be sure that that listed variable is the single factor responsible for this QoL score ^: Caution, low base size

30. DISCUSSION: FACTORS AFFECTING QOL

31. Approximately 1 in 5 carers of relatives with incontinence have a QoL score significantly lower than the average • “High risk” group of carers: -20% of the total - QoL significantly below the average (7.1 vs 13.2) • Risk factors: • Very severe condition of relative (number of conditions, dementia/depression, mostly immobile and non-communicative) • Very high dependency on carer (who lives in same household, helps with most activities of daily life, has given up normal life) • Carer experiences financial difficulties • Carer’s resulting emotional /attitudinal outlook is very negative Better Quality of life 10 20 0 25 15 Average quality of life (cases)13.2 Worse Quality of life High Risk7.1 Q16A. How would you describe your physical and emotional condition over the last two weeks?

32. Carers’ overall Quality of life is affected by a variety of aspects – there is no single factor Age & Duration of Care • Age has a strong correlation with overall quality of life, with QoL deteriorating as the carer and the relative gets older • Control carers who have spent 5yrs+ caring have a signif. (p<.05) better QoL What affects quality of life? Support/info received • The level of support and information available has an impact on QoL, with those better informed/supported having a better QoL (p<.05)^ • Even when hired help is enlisted, control carers have a better QoL (p<.05)^ Dependency • QoL is better (p<.1) for control carers of a severely dependent relative ^: Caution, low base size

33. Carers’ overall Quality of life is affected by a variety of aspects – there is no single factor Age & Duration of Care Cross Gender Care Income Living Situation • Age has a strong correlation with overall quality of life, with QoL deteriorating as the carer and the relative gets older • Control carers who have spent 5yrs+ caring have a signif. (p<.05) better QoL • Male case carers of female relatives have a significantly worse (p<.05) QoL • Control carers on low income (€18,000 or less) have a better (p<.05) QoL vs. incontinence carers What affects quality of life? • Control carers living close to the end user (same HH or walking distance) have a better QoL • Control carers living 30mins drive away have a worse QoL (p<.05) Support/info received • The level of support and information available has an impact on QoL, with those better informed/supported having a better QoL (p<.05)^ • Even when hired help is enlisted, control carers have a better QoL (p<.05)^ Dependency • QoL is better (p<.1) for control carers of a severely dependent relative ^: Caution, low base size

34. TRENDS: AGEING POPULATION “Population ageing is unprecedented, with one in five expected to be over 60 by 2050” (Source: www.UN.org) Age has a strong correlation with overall quality of life, which deteriorates as the age of either carer or cared for relative increases With the ageing population carers will increasingly need to care for (incontinent) older relatives for longer, whilst they themselves are ageing In the future carers’ QoL may worsen when incontinence is present QoL deteriorates as age of carer and relative increases ^: Caution, low base size

35. TRENDS: AGEING POPULATION “Population ageing is unprecedented, with one in five expected to be over 60 by 2050” (Source: www.UN.org) Age has a strong correlation with overall quality of life, which deteriorates as the age of either carer or cared for relative increases With the ageing population carers will increasingly need to care for (incontinent) older relatives for longer, whilst they themselves are ageing In the future carers’ QoL may worsen when incontinence is present QoL deteriorates as age of carer and relative increases ^: Caution, low base size

36. TRENDS: AGEING POPULATION “Population ageing is unprecedented, with one in five expected to be over 60 by 2050” (Source: www.UN.org) Age has a strong correlation with overall quality of life, which deteriorates as the age of either carer or cared for relative increases With the ageing population carers will increasingly need to care for (incontinent) older relatives for longer, whilst they themselves are ageing In the future carers’ QoL may worsen when incontinence is present QoL deteriorates as age of carer and relative increases ^: Caution, low base size

37. TRENDS: REDUCED SUPPORT “Healthcare costs rising faster than funding ➜ support structures become increasingly ill-suited to meet today’s requirements” (Source: www.eufutureofhealthcare.com) With decreased support from the state, receiving the right level of support and information will become more important The more informed/supported carers are, the better their QoL; in case of incontinence, carers receiving hired help still report a significantly worse QoL than carers of non incontinent relatives The more informed/supported carers are about incontinence care, the better their QoL Statistical significance: **: p<.05 ^: Caution, low base size

38. TRENDS: REDUCED SUPPORT “Healthcare costs rising faster than funding ➜ support structures become increasingly ill-suited to meet today’s requirements” (Source: www.eufutureofhealthcare.com) With decreased support from the state, receiving the right level of support and information will become more important The more informed/supported carers are, the better their QoL; in case of incontinence, carers receiving hired help still report a significantly worse QoL than carers of non incontinent relatives The more informed/supported carers are about incontinence care, the better their QoL Statistical significance: **: p<.05 ^: Caution, low base size

39. TRENDS: REDUCED SUPPORT “Healthcare costs rising faster than funding ➜ support structures become increasingly ill-suited to meet today’s requirements” (Source: www.eufutureofhealthcare.com) With decreased support from the state, receiving the right level of support and information will become more important The more informed/supported carers are, the better their QoL; in case of incontinence, carers receiving hired help still report a significantly worse QoL than carers of non incontinent relatives The more informed/supported carers are about incontinence care, the better their QoL Statistical significance: **: p<.05 ^: Caution, low base size

40. TRENDS: CARE BURDEN “With an increase in chronic diseases, an ageing population and ill-suited financial structures, the care burden of those severely dependent will become greater” (Source: www.eufutureofhealthcare.com) QoL is directionally worse for incontinence carers of someone who is severely dependent, even when receiving hired help - As older people live longer, over time (5yrs+) incontinence carers will also see their QoL worsen significantly vs. other carers QoL will become more of a burden for those severely dependent Statistical significance: *: p<.1; **: p<.05 ^: Caution, low base size

41. TRENDS: CARE BURDEN “With an increase in chronic diseases, an ageing population and ill-suited financial structures, the care burden of those severely dependent will become greater” (Source: www.eufutureofhealthcare.com) QoL is directionally worse for incontinence carers of someone who is severely dependent, even when receiving hired help - As older people live longer, over time (5yrs+) incontinence carers will also see their QoL worsen significantly vs. other carers QoL will become more of a burden for those severely dependent Statistical significance: *: p<.1; **: p<.05 ^: Caution, low base size

42. TRENDS: CARE BURDEN “With an increase in chronic diseases, an ageing population and ill-suited financial structures, the care burden of those severely dependent will become greater” (Source: www.eufutureofhealthcare.com) QoL is directionally worse for incontinence carers of someone who is severely dependent, even when receiving hired help - As older people live longer, over time (5yrs+) incontinence carers will also see their QoL worsen significantly vs. other carers QoL will become more of a burden for those severely dependent Statistical significance: *: p<.1; **: p<.05 ^: Caution, low base size

43. Future trends suggest the care burden for carers of older people with incontinence will become even greater Ageing Population Reduced Support Poorer Quality of Life “Population ageing is unprecedented, with one in five expected to be over 60 by 2050” (Source: www.UN.org) “With healthcare costs rising faster than funding, support structures are becoming increasingly ill-suited for today’s requirements” (Source: www.eufutureofhealthcare.com) “With an increase in chronic diseases, an ageing population and ill-suited financial structures, the care burden of those severely dependent will become even greater”

44. QoL is improved when the carer has information and support – healthcare system & internet are found to be useful • The healthcare system e.g. doctors, pharmacists and internet sources e.g. medical websites are considered the most useful amongst carers of incontinent relatives seeking more information. • Our research shows the more informed/supported carers are the better their QoL. The most useful information sources for helping carers 2 1 Internet (Medical websites/Manufacturers websites/Forums) Healthcare system (doctors/pharmacists/nurses/ hospitals) Statistical significance: **: p<.05

45. Conclusions &recommendationS

46. QoL of life is impacted by caring for someone with incontinence – growing ageing populations will heighten the need for support Quality of Life • The hypothesis that caring for someone with incontinence affects quality of life is observed, although the impact is not as great as we might have expected • Quality of life of carers of relatives with incontinence is affected by various factors (age, level of support/info, dependency, length of time spent caring) Future Trends • With an increase in chronic diseases, an ageing population and ill-suited healthcare structures, the care burden for carers of persons with incontinence will become even greater • Helping these carers is crucial with these future trends in mind Necessity for Information • Information on incontinence is necessary for carers to improve QoL • Disseminating this supportive documentation via healthcare system as well as Internet will be most useful to carers • Previous work amongst General Practitioners also highlighted a need for greater understanding and support with the condition (§) §: GP Incontinence Study conducted by Ipsos, sample of 551 GPs /Internists across France, Poland, UK, fieldwork March 2010

47. THANK YOU!