Future dementia care and evaluating the efficiency of the Dementia Initiative

1. Future dementia care and evaluating the efficiency of the Dementia Initiative Penny Taylor, Associate Director Access Economics 04 June 2009

2. Making choicesFuture dementia care: projections, problems and preferences • Access Economics report for Alzheimer’s Australia

3. InterGenerational Report 2:2007 • IGR2: % population 65+ increases from 8.5% 1967 to 13.4% 2007 & 25.3% 2047

4. Dependency ratios • Dependency increases from 48.2% in 2007 to 90.9% by mid-century

5. Participation, productivity and cost effectiveness • Productivity Commission (2005) ageing report – government spending on health, aged care and pensions will be key drivers of future growth in government spending. • Plausible increases in fertility and net migration would have little impact on ageing trends. • PC recommended: • Measures to raise productivity and labour participation • More cost-effective service provision, especially in health care* *(highly relevant to the evaluation of the Dementia Initiative)

6. Labour force participation • These findings have led to a Govt focus on improving labour force participation and productivity including among older people (55+) and women.

7. Primary carers 2003

8. 2009 Budget fiscal strategy • The 2009-10 Budget fiscal strategy - once economic growth returns to above trend levels, hold real growth in spending to 2% pa until the budget returns to surplus. • AE projections of population growth per annum 2008 to 2028:

9. Future dementia care • Demographic ageing will lead to an increase in the number and % of people who have dementia • In 2009, 1.1% of the population has dementia. By 2050, 2.8% of the population is projected to have dementia • Implies a greater future need in Australia for dementia care services whilst at the same time, governments will have less capacity to pay • Providing quality care for people with dementia will be a core issue

10. Access Economics project • investigate the current cost and staff resources allocated to dementia care (through literature, data and analysis) • investigate the future workforce for dementia care (through economic modelling and analysis) • investigate carers’ preferences in relation to future care arrangements (using a choice modelling survey)

11. Workforce allocated to dementia care • Formal paid care staff in RAC and community care (HACC, EACH) includes: • Direct care (nurses, physio etc) = 74% of wage costs • Other staff (managers, cooks etc) • Unpaid volunteers who work in RAC facilities and community care • Unpaid care provided by family, friends or neighbours (informal care)

12. Formal (paid) care for people with dementia 2008

13. Volunteers in RAC • Based on ABS data, around 3.7 million hours per year provided by volunteers in RAC for dementia • 2,174 full time equivalents • Note – many volunteers also involved in HACC, and other community care programs, but extremely difficult to estimate quantum of this.

14. Unpaid informal care • StollzNow (2007) survey suggested most family and friends of pwd spent less than 5 hpw, but 18% spent 40+ hpw. Average was 16 hpw. • The AE survey for this project found family carers spend on average 24.4 hpw and informal care is not just provided to pwd living in the community, but also to pwd living in RAC, and receiving community care. Confirmed by AIHW data for EACH and CACP. • ABS SDAC data (small sample for dementia) suggested an average of 38 to 42 hours of informal care per week per person with dementia

15. Unpaid informal care • Used the AE survey estimate of 24.4 hours of informal care provided per week per person with dementia (as mid point) to estimate unpaid informal care hours. • Estimated 203 million unpaid hours of care provided to people with dementia in 2008.

16. Value of care for people with dementia 2008

17. Second task in Making Choices report • Project the likely future use of dementia care and the supply of staff and unpaid carers providing various types of dementia care. • Modelling was based on current dementia care policy and programs, and current rates of use of different types of care (including unpaid care). • Projections are based only on demographic change (all else held constant)

18. Approach to projections of future dementia care • Future use of dementia care • Applied current usage rates for unpaid family care, community care and RAC to the projected dementia population • Projections of pwd by age and gender using 2003 prevalence rates by age/gender applied to demographic projections • Future supply of dementia care • Supply of unpaid informal care based on the rate at which current population by age and gender supplies unpaid care. Note - Unpaid family care is provided to pwd in RAC as well as receiving community care (based on AIHW and AE survey) • Supply of community care based on growth in the population aged 70+ (consistent with Australian Government approach to aged care planning) • Supply of RAC workforce based on split between nurses and other staff • Nurses modelled separately based on AE nurses workforce model • Higher proportion of nurses in high care RAC than low care RAC • Other RAC (non-nursing) staff grown at rate of growth of population aged 70+

19. Projections of gaps in dementia care (per pwd)

20. Projections of gaps in informal care By 2029, excess demand of 6.6 hours per person with dementia per week

21. Projections of gaps in RAC • High care RAC - by 2029, excess demand of 3.8 hours per pwd per week (92,500 FTEs) • Low care RAC – by 2029, excess demand of 0.4 hours pwd per week (9,000 FTEs)

22. 3rd task in Making Choices Report • The dementia care workforce requires urgent planning • AE undertook a choice modelling survey to determine the characteristics of paid care that are valued most • Results can be used to inform us about service delivery options that are preferred by consumers (people with dementia and their carers). • We can then direct future resources to those areas that are valued most.

23. Choice modelling survey • To determine the attributes current and former informal carers value, two choice modelling experiments were used • One for community care and the other for residential care • Each experiment presents respondents with a series of dementia care scenarios and asks them to choose their most preferred option • Value of alternative dementia care services are implicitly revealed through the choices respondents make.

24. Sample statistics

25. Sample statistics

26. Sample statistics

27. Attributes/levels - community care • General home support services (1 service/week; 2/week; 1/fortnight; or not available) • Dementia care case worker (organise individualised care program incl community care; or not available) • Qualified person who can provide support for a specific need (Not available; or 1/month; 1/fortnight; 1/week) • Community centres that offer counselling, recreational activities, education, and info services (available during working week and w/e; only during week; only w/e; or not available) • Helpline that can provide advice and referral services (available 24hrs; 7am-10pm; working hrs; or not available) • Emotional support for those providing care (none; phone; group; or individual) • Respite care (available regularly for extended periods; regularly for part of day only; emergencies special events only; not available) • Out-of-pocket costs ($0/week; $25/week; $50/week; $75/week)

29. Attributes/levels RAC • Distance between home of person providing care and RAC facility (10 mins away; 30 mins; 60 mins; 90 mins) • RAC facility provides (all private; some private; limited private; no private) • Accommodate cultural backgrounds (individual; group; special occasions only; never) • Skills of the staff (specialist dementia; legal minimum) • Capacity to provide services for different stages of dementia(All stages; early to moderate only) • Visiting hours (fully flexible+overnight; fully flexible; 7am-10pm; 8am-11am + 5pm-8pm) • Accommodation bond ($100,000; $200,000; $300,000; $400,000) • Ongoing cost for accommodation($30/day; $60; $90; $120)

31. Findings- choice in care provision

32. Survey findings

33. Survey findings

34. The survey results represent the average • The results represent ‘average’ preferences across all respondents. In reality, each caring situation is different so preferences across individuals will vary. Preferences depend on factors such as: • Severity of dementia • Exposure the range of formal care services available • Given the individuality of care situations and experiences with dementia care services across Australia, it is likely a wide range of preferences have been expressed within the choice modelling survey. However, the results represent average preferences for individual service characteristics.

35. Demand for community care

36. Community care rankings

37. Demand for RAC

38. Demand for RAC

39. Demand for RAC

40. Demand for RAC

41. Demand for RAC

42. Demand for RAC

43. Demand for RAC

44. RAC rankings

45. Implications … Eight major issues need to be addressed • Aged care planning ratios • Balance of community and residential • Information and consumer support • Quality dementia care • Workforce options for training • Quality care for special needs groups • Research • Develop new financing mechanisms

46. The balance of community and residential care services • Carers and people with dementia value choice. Economic argument for consumer sovereignty - consumers generally better positioned to select the care appropriate to their circumstances. • More flexibility in community and respite care services to respond to the range of needs

47. Information and consumer support • Carers and people with dementia are required to make complex choices. They need to be well informed and supported through Aged Care Assessment Teams and organisations such as Alzheimer's Australia • Access to information and carer support should be enhanced and expanded through the National Dementia Support Program and the Commonwealth Respite and Carelink Centres.

48. Quality dementia care • The consistency and coverage of dementia skills training needs to be improved by extending access to dementia training for formal and family carers, promoting pervasive understanding of quality person-centred dementia care, and monitoring outcomes

49. Workforce options for carers • improved access to quality long day respite care (potentially through greater prioritisation of dementia respite services in the National Carers Respite Program); and • greater workplace flexibility (eg carer leave entitlements, work-based aged care).

50. Special needs groups Special needs groups are disadvantaged in accessing quality dementia care: • Younger people with dementia; • Indigenous people; • people from Culturally and Linguistically Diverse backgrounds; • those with dementia and psychiatric issues who fall between the aged care and mental health systems; and • those in rural and remote areas.