1. Carers NSW Biennial Conference March 2011 Making Caring Count the cost and value of caring. Jane Hall Professor of Health Economics Centre for Health Economics Research and Evaluation University of Technology Sydney

2. Outline Counting – the importance of unpaid work Costing - Approaches to costing informal care Valuing - How should informal care be valued –Understanding benefits and costs –Some research Policy – what we need to know

3. Counting carers 18% Australians have a disability that affects their daily activities –Almost 1 in 5 12% Australians are carers for someone with a disability of aged over 60 –1 in 8 13% of women and 11% men are carers –1 in 7-8 women; 1 in 9 men Source ABS Survey of Disability, Ageing and Carers 2009

4. Paid and unpaid work Time Use NecessarySleeping, eating, washing 46% Contracted timePaid work, formal education 16% Committed timeHousework, childcare, informal care, volunteering 17% Free timeSports and leisure21% Source: ABS Time Use Survey 2006

5. How men and women use their time ABS Time Use Survey 2006

6. Who cares? Time spent on unpaid work ABS Time Use Survey 2006

7. Counting for Nothing Informal care traditionally seen as a free resource So moving from institutions to home care is seen as a cost saving But –Time of carers (direct input) Van den Berg and Spauwen 2006, and others –Reduces paid employment or education Ettner 1996, Carmichael and Charles 2003, –Reduces pay Heitmuller and Inglis 2007

8. Effects of caregiving are complex Negative Physical and mental health Finances Social life and leisure Positive Satisfaction with role Altruism Reciprocity

9. What’s it worth? Approaches to valuing informal care Proxy method –Hours of care = what you would have paid for them –Implies perfect substitution –Assumes paid care is available Opportunity cost method –Hours of care = what you would have been paid –Ignores difficulty of different tasks –Ignores why carers care Both focus on cost not benefit

10. Why is this important Many health care programs are assessed by considering costs and benefits Ignoring costs and benefits of carers leads to under estimates and invalid comparisons Focussing only on costs –Current methods probably under-estimate Benefits or consequences may be positive and negative –Spillover effects –Altruistic gains

11. Well-being research More large scale surveys include a question on happiness or life satisfaction Subjective measure of experience Generally used –Income, unemployment, family situations, inflation. Higher income is associated with higher wellbeing So lower wellbeing can valued as drop in income

12. Wellbeing losses due to caregiving in Australia: current work HILDA panel data Representative sample, surveyed 2001-06 Data set includes –life satisfaction, –living arrangements, –income, employment, –provision of informal care, –health-related quality of life (SF-6D) 16,984 individuals 2,729 carers

13. 13 Self reported life satisfaction OverallCaregiversNon caregivers 00.140.200.14 1 0.170.190.17 2 0.380.540.37 3 0.721.060.69 4 1.301.631.27 5 4.385.614.27 6 5.866.695.78 7 18.3818.0818.41 8 32.4331.1032.55 9 21.5120.9021.57 10 14.7214.0114.79

14. What affects satisfaction? Positives –Income –Health –Married/partner –Working part-time Negative –Unemployed/Working full-time –Children

15. Informal care Reduces wellbeing by 0.07 (-10 scale) –Small but significant Caregiving, not hours of care Impact –Income effect $325 per week –Health effect 0.04 QALY

16. Preferences research: Stated preferences: individuals’ choices in hypothetical scenarios tell us about their preferences Moves from a rating scale to exploring trade-offs Allows for ‘non-market’ situations Increasingly used to explore health and health care

17. Assessing carers’ preferences in palliative care: recent research Palliative care is a special situation but not often studied Sample of informal carers of community palliative care –82 in descriptive phase –168 high care (72) and low care (96) in preference study Data collection –Face-to-face interviews –Various methods

18. Health of informal carers * **** *** **** *** **** *p<0.05; **p<0.01; ***p<0.001; ****p<0.0001.

19. Impact of caring Emotional - negative & positive Sports/hobbies/interests Social life/relationships/family Holidays/travel Work Physical health Finances

20. Negative emotional impacts Emotional exhaustion “I am her nurse, her cook, her driver, her cleaner. In other words I replace everybody including the nurse because I [am] giving her also the injections …. I am completely exhausted, not physically as much as the other way” Frustration, takes over life “It’s my father and I love him and I’ll do it, but ….it’s stopping your normal life, like what you normally do and it can become quite frustrating at times. Your life changes completely” Neglect own emotional health “I think I don’t look after my emotional well-being well enough. I think that’s one thing that I just let slip. The time thing - can I actually fit in - no I can’t, you know and so that’s when people have given me names of counselors, that’s the sort of thing I push to the back of the priorities”

21. Positive emotional impacts Satisfaction “Well, I wouldn’t have wanted anyone else to care for her and I think we believe we’re doing a good job and it helps us you know. At least we know that we’ve done all we can for her. So there is satisfaction yeh” Giving something back “My mother’s had a terrible life really as far as family goes so it’s great to give her something back in her lifetime you know” Benefits of home-care “It gives me pleasure. She is my mother and she looked after me, and my kids. It’s the least I can do. It is better for her to be at home. I can give her extra care and comfort. I know what she likes. I can play her special music, arrange her so she is comfortable, cook and serve her food I know she likes”

22. Plan APlan B A general community nurse visitsnot providedweekly A palliative care nurse visitsnot providedweekly Phone advice from a palliative care nurse is not providedavailable 24 hours a day Help with general household tasks2 hours per week4 hours per week Meals cooked and delivered2 per week4 per week Someone to do household shoppingprovidednot provided Transport to medical appointments and treatment not providedprovided Emotional support for younot providedfrom group meetings with carers in the same situation Emotional support for the sick personnot providedFrom group meetings with others in the same situation A case coordinator isprovidednot provided

23. High Care Choice of current Significant covariates: informal care time; working, night care

24. Summary Informal carers value –Palliative Care nurse visits –24 hour access to PC nurse phone advice –Community nurse visits High Care –Personal care assistant, shopping & home respite Low Care –Domestic help, transport, emotional support carer & a case coordinator Threshold effects Carers don’t want to be replaced!

25. Conclusion Importance of counting –Out of the count, out of mind Value of caring activity –The right values are needed to evaluate policy Impact of caring –Understanding needed to make good policy