Nobody’s Unpredictable © 2012 Ipsos UK. All rights reserved. Contains Ipsos' Confidential and Proprietary information and may not be disclosed or reproduced without the prior written consent of Ipsos. Global Forum on Incontinence, Copenhagen, April 2012 Ipsos project team: Jon Weeks, Gemma Maurimootoo, Alexander Parker & Freya Benson Presented by Giovanni Lamura, INRCA, Italy Quality of Life in Carers of Older People with Incontinence in Italy

2 Click to edit master title style Content Objectives Methodology Key findings Conclusions & recommendations 2 Discussion

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

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 understanding of 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 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 understanding of 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.” Methodology / 1

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

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

Methodology / 2 Sample 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 Fieldwork country: Italy Data collection: Online Fieldwork dates: 5 th - 15 th 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

carer’s Gender CaseControl (a)(b) Male3138 Female6962 Profile of carers is evenly matched in terms of gender, age, length of care & relationship to relative Statistical significance (2-tailed testing): **: p<.05

carer’s Age carer’s Gender CaseControl (a)(b) Male3138 Female6962 CaseControl (a)(b) yrs yrs yrs yrs yrs 96 Avg (years) 41.4 Profile of carers is evenly matched in terms of gender, age, length of care & relationship to relative Statistical significance (2-tailed testing): **: p<.05

carer’s Age carer’s Gender CaseControl (a)(b) Male3138 Female6962 CaseControl (a)(b) yrs yrs yrs yrs yrs 96 Avg (years) 41.4 Length of Care Provision CaseControl (a)(b) Under 1yr yrs yrs yrs75 5 yrs+2429 Avg (years)2.7 Profile of carers is evenly matched in terms of gender, age, length of care & relationship to relative Statistical significance (2-tailed testing): **: p<.05

Relationship to relative carer’s Age carer’s Gender CaseControl (a)(b) Male3138 Female6962 CaseControl (a)(b) yrs yrs yrs yrs yrs 96 Avg (years) 41.4 CaseControl (a)(b) Your mother2528 Your grandmother**2417 Your father13 18 Your mother-in-law99 Your aunt88 Your grandfather** 82 Your uncle54 Your father-in-law43 Other43 Your son11 Your spouse01 Your daughter01 Length of Care Provision CaseControl (a)(b) Under 1yr yrs yrs yrs75 5 yrs+2429 Avg (years)2.7 Profile of carers is evenly matched in terms of gender, age, length of care & relationship to relative Statistical significance (2-tailed testing): **: p<.05

Relative’s Age Relative’s Gender CaseControl Male 3133 Female 6663 CaseControl 60-69yrs** yrs yrs yrs**1910 Mean Statistical significance: **: p<.05 Also profile of relatives was evenly matched – but more conditions amongst incontinence sufferers

Relative’s Age Relative’s Gender CaseControl Male 3133 Female 6663 CaseControl 60-69yrs** yrs yrs yrs**1910 Mean Statistical significance: **: p<.05 Also profile of relatives was evenly matched – but more conditions amongst incontinence sufferers Conditions of relative CaseControl Incontinence 100- Arthritis** 3527 Osteoporosis** 3425 Heart Condition 3128 Chronic Pain** 3323 Cardiov. Disease 3124 Diabetes** 3221 Dementia** 2814 Depression 2016 Asthma** 1812 Parkinson’s 109 Stroke** 136 Cancer 610 Migraine 74 Menopause 65 Other 56 Angina 63 Epilepsy 22 No. of conditions**

Relative’s Dependency** Conditions of relative Relative’s Age Relative’s Gender CaseControl Male 3133 Female 6663 CaseControl 60-69yrs** yrs yrs yrs**1910 Mean CaseControl Incontinence 100- Arthritis** 3527 Osteoporosis** 3425 Heart Condition 3128 Chronic Pain** 3323 Cardiov. Disease 3124 Diabetes** 3221 Dementia** 2814 Depression 2016 Asthma** 1812 Parkinson’s 109 Stroke** 136 Cancer 610 Migraine 74 Menopause 65 Other 56 Angina 63 Epilepsy 22 No. of conditions** CaseControl Dependent 9893 Independent 1 7 Statistical significance: **: p<.05 Also profile of relatives was evenly matched – but more conditions amongst incontinence sufferers Hired help** CaseControl Yes 13 7 No % of cases helps with changing always or sometimes!

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’  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

© 2012 Ipsos 16 CLICK TO EDIT MASTER TITLE STYLE KEY FINDINGS

Carers of relatives without incontinence have a significantly better QoL, as a result of a variety of factors Those who provide care for someone with incontinence have a significantly worse quality of life (QoL) versus carers who look after someone without incontinence. A difference in seen at 90% confidence Overall QoL is affected by a variety of aspects – there is no single isolating factor; however age, dependency, proximity to relative, income, length of care provision and the amount if support/info available are all seen to have an impact on QoL Future trends suggest the burden for carers will become greater, with an ageing population, an increase in chronic diseases and ill- suited financial structures

Carers of relatives without incontinence have a significantly better QoL, as a result of a variety of factors Those who provide care for someone with incontinence have a significantly worse quality of life (QoL) versus carers who look after someone without incontinence. A difference in seen at 90% confidence Overall QoL is affected by a variety of aspects – there is no single isolating factor; however age, dependency, proximity to relative, income, length of care provision and the amount if support/info available are all seen to have an impact on QoL Future trends suggest the burden for carers will become greater, with an ageing population, an increase in chronic diseases and ill- suited financial structures

Carers of relatives without incontinence have a significantly better QoL, as a result of a variety of factors Those who provide care for someone with incontinence have a significantly worse quality of life (QoL) versus carers who look after someone without incontinence. A difference in seen at 90% confidence Overall QoL is affected by a variety of aspects – there is no single isolating factor; however age, dependency, proximity to relative, income, length of care provision and the amount if support/info available are all seen to have an impact on QoL Future trends suggest the burden for carers will become greater, with an ageing population, an increase in chronic diseases and ill- suited financial structures

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) Base: N=609 % of responses (total sample) Trend of response distribution Average quality of life score across both groups: 13.6

Carers of relatives without incontinence have a better QoL Worse Quality of life 1020 Carers of relatives with incontinence (case) 13.2 Carers of relatives without incontinence (control) 14.0* 15 Better Quality of life Q16A. How would you describe your physical and emotional condition over the last two weeks? Statistical significance: *: p<.1; **: p<.05

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

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

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

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

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

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

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

Rank of factors affecting carer’s QoL ^: Caution, low base size 1.Living Situation Lives 30 minutes away from relative (9.76^) 2.Being Informed Not very well informed about incontinence care (11.14^) 3.Level of Support No support or information from health system (11.62^) 4.Duration of Care Carer has been caring for 4-5 years + (12.12) 5.Dependency Caring for someone severely dependent (12.15) 6.Relative’s Age Caring for someone 90 years + (12.70^) 7.Carer’s Age Carer is aged 50 years + (12.78) 8.Cross Gender Male carer of a female relative (12.95^) Level of support Worse Quality of life Better Quality of Life Living Situation Being Informed Length of Care End user Age CGR Age Cross Gender Dependency 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

© 2012 Ipsos 30 CLICK TO EDIT MASTER TITLE STYLE DISCUSSION: FACTORS AFFECTING QOL 30

Approximately 1 in 5 carers of relatives with incontinence have a QoL score significantly lower than the average Q16A. How would you describe your physical and emotional condition over the last two weeks? Worse Quality of life Better Quality of life High Risk 7.1 Average quality of life (cases) 13.2 “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

QoL is better (p<.1) for control carers of a severely dependent relative Dependency 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 Age & Duration of Care 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)^ Support/info received Carers’ overall Quality of life is affected by a variety of aspects – there is no single factor What affects quality of life? ^: Caution, low base size

QoL is better (p<.1) for control carers of a severely dependent relative Dependency 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 Age & Duration of Care 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)^ Support/info received 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) Living Situation Male case carers of female relatives have a significantly worse (p<.05) QoL Cross Gender Care Control carers on low income (€18,000 or less) have a better (p<.05) QoL vs. incontinence carers Income Carers’ overall Quality of life is affected by a variety of aspects – there is no single factor What affects quality of life? ^: Caution, low base size

TRENDS: AGEING POPULATION “Population ageing is unprecedented, with one in five expected to be over 60 by 2050” (Source: - 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

TRENDS: AGEING POPULATION “Population ageing is unprecedented, with one in five expected to be over 60 by 2050” (Source: - 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

TRENDS: AGEING POPULATION “Population ageing is unprecedented, with one in five expected to be over 60 by 2050” (Source: - 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

TRENDS: REDUCED SUPPORT “Healthcare costs rising faster than funding ➜ support structures become increasingly ill-suited to meet today’s requirements” (Source: - 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 How well informed on Incontinence Care** Base SizeCase (A) Very well informed N=50^ (B) Quite well informed N= (C) Not very well informed N=42^ Support/ information received from health & social system Base SizeCase (A) No support/informationN=26^ (B) Not a lot of support/informationN= (C) Some but would like moreN= (D) Some which is enoughN=36^ (E) Quite a lot of support/informationN=23^ 15.52** (F) A lot of support/informationN=2^ The more informed/supported carers are about incontinence care, the better their QoL ^: Caution, low base size Statistical significance: **: p<.05

TRENDS: REDUCED SUPPORT “Healthcare costs rising faster than funding ➜ support structures become increasingly ill-suited to meet today’s requirements” (Source: - 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 How well informed on Incontinence Care** Base SizeCase (A) Very well informed N=50^ (B) Quite well informed N= (C) Not very well informed N=42^ Support/ information received from health & social system Base SizeCase (A) No support/informationN=26^ (B) Not a lot of support/informationN= (C) Some but would like moreN= (D) Some which is enoughN=36^ (E) Quite a lot of support/informationN=23^ 15.52** (F) A lot of support/informationN=2^ The more informed/supported carers are about incontinence care, the better their QoL ^: Caution, low base size Statistical significance: **: p<.05

TRENDS: REDUCED SUPPORT “Healthcare costs rising faster than funding ➜ support structures become increasingly ill-suited to meet today’s requirements” (Source: - 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 How well informed on Incontinence Care** Base SizeCase (A) Very well informed N=50^ (B) Quite well informed N= (C) Not very well informed N=42^ Support/ information received from health & social system Base SizeCase (A) No support/informationN=26^ (B) Not a lot of support/informationN= (C) Some but would like moreN= (D) Some which is enoughN=36^ (E) Quite a lot of support/informationN=23^ 15.52** (F) A lot of support/informationN=2^ The more informed/supported carers are about incontinence care, the better their QoL ^: Caution, low base size Statistical significance: **: p<.05

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: - 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 Level of Dependency Base SizeCaseControl Severely Dependent* n=103/ Moderately Dependent n=156/ Slightly Dependent n=40/ Independent* n=4/21^ QoL will become more of a burden for those severely dependent Assistance Received Base SizeCaseControl Hired help** n=39/23^ ^: Caution, low base size Statistical significance: *: p<.1; **: p<.05

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: - 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 Level of Dependency Base SizeCaseControl Severely Dependent* n=103/ Moderately Dependent n=156/ Slightly Dependent n=40/ Independent* n=4/21^ QoL will become more of a burden for those severely dependent Assistance Received Base SizeCaseControl Hired help** n=39/23^ ^: Caution, low base size Statistical significance: *: p<.1; **: p<.05

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: - 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 Level of Dependency Base SizeCaseControl Severely Dependent* n=103/ Moderately Dependent n=156/ Slightly Dependent n=40/ Independent* n=4/21^ QoL will become more of a burden for those severely dependent Assistance Received Base SizeCaseControl Hired help** n=39/23^ ^: Caution, low base size Statistical significance: *: p<.1; **: p<.05

Ageing Population “Population ageing is unprecedented, with one in five expected to be over 60 by 2050” (Source: Reduced Support “With healthcare costs rising faster than funding, support structures are becoming increasingly ill- suited for today’s requirements” (Source: Poorer Quality of Life “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” Future trends suggest the care burden for carers of older people with incontinence will become even greater

QoL is improved when the carer has information and support – healthcare system & internet are found to be useful Healthcare system (doctors/pharmacists/nurses/ hospitals) Internet (Medical websites/ Manufacturers websites/Forums)  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 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. How well informed on Incontinence Care** Base SizeCase (A) Very well informed N= (B) Quite well informed N= (C) Not very well informed N= Support/ information received from health & social system Base SizeCase (A) No support/informationN= (B) Not a lot of support/informationN= (C) Some but would like moreN= (D) Some which is enoughN= (E) Quite a lot of support/informationN= ** (F) A lot of support/informationN= The most useful information sources for helping carers 2 1 Statistical significance: **: p<.05

© 2012 Ipsos 45 CLICK TO EDIT MASTER TITLE STYLE CONCLUSIONS & RECOMMENDATIONS 45

QoL of life is impacted by caring for someone with incontinence – growing ageing populations will heighten the need for support §: GP Incontinence Study conducted by Ipsos, sample of 551 GPs /Internists across France, Poland, UK, fieldwork March 2010 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) Quality of Life 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 Future Trends 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 (§) Necessity for Information

© 2012 Ipsos 47 CLICK TO EDIT MASTER TITLE STYLE THANK YOU! 47