Penny Taylor, Associate Director

Access Economics

04 June 2009

Future dementia care and evaluating the efficiency of the

Dementia Initiative

1

• Access Economics report for Alzheimer’s Australia

2

Making choices

Future dementia care: projections,

problems and preferences

InterGenerational Report 2:2007

3

• IGR2: % population 65+ increases from 8.5% 1967 to 13.4% 2007 & 25.3% 2047

SHARE OF AUSTRALIA’S POPULATION AGED 65 YEARS AND OLDER, 1967-2047

0%

5%

10%

15%

20%

25%

30%

1967 1977 1987 1997 2007 2017 2027 2037 2047

Source: Access Economics derived from Costello (2007:16).

Dependency ratios

4

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

DEPENDENCY RATIOS, 2007 TO 2151

2007 2020 2051 2101 2151 Population (million) 21.0 24.8 32.0 40.3 45.7 Share of 65+ (%) 13.1 17.3 26.3 32.2 33.7 Share of <15 (%) 19.4 18.0 15.6 14.3 14.0 Share of 15-64 67.5 64.7 58.1 53.5 52.3 65+ dependency (%) 19.5 26.8 45.3 60.1 64.2 <15 dependency (%) 28.7 27.8 26.9 26.7 26.7

Total dependency (%) 48.2 54.6 72.2 86.8 90.9 Source: Productivity Commission (2008).

Participation, productivity and cost effectiveness

5

• 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)

Labour force participation

6

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

EMPLOYMENT PARTICIPATION, 2008 (%)

Age (years) Males Females 10-14 0.0% 0.0% 15-19 55.8% 58.9% 20-24 85.2% 78.8% 25-29 89.9% 74.8% 30-34 90.3% 68.7% 35-39 90.6% 70.8% 40-44 89.4% 75.0% 45-49 90.0% 77.4% 50-54 86.0% 68.7% 55-59 72.8% 52.7% 60-64 50.8% 28.1% 65-69 20.7% 8.5% 70-74 5.9% 1.3% 75-79 0.0% 0.0%

Sources: ABS 6105.0.

Primary carers 2003

7

FIGURE ERROR! NO TEXT OF SPECIFIED STYLE IN DOCUMENT.-1: PRIMARY CARERS BY AGE

AND GENDER, AUSTRALIA, 2003

0

10

20

30

40

50

60

70

80

90

< 18 18-24 25-34 35-44 45-54 55-64 65-74 75+

Age Group

Nu

mb

er o

f p

rim

ary

care

rs (

'000

)

Male Female

Source: ABS (2005a).

2009 Budget fiscal strategy

8

• 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:

0.0%

1.0%

2.0%

3.0%

4.0%

5.0%

6.0%

0-14 15-24 25-34 35-44 45-49 50-54 55-59 60-64 65-74 75-84 85+

Popu

latio

n gr

owth

per

annu

m

Age group

Male

Female

Future dementia care

9

• 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

Access Economics project

10

1. investigate the current cost and staff resources allocated to dementia care (through literature, data and analysis)

2. investigate the future workforce for dementia care (through economic modelling and analysis)

3. investigate carers’ preferences in relation to future care arrangements (using a choice modelling survey)

Workforce allocated to dementia care

11

• 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)

Formal (paid) care for people with dementia 2008

12

Residential location – living in …

People with dementia

(pwd) % of pwd

Hours of care

provided FTEs

Annual hours

per pwdFTEs per

pwd

Community with no assistance 85,125 37% 0 0 0 0.0

Community with HACC 41,399 18% 1.6 million 941 39 0.0

Community with CACP 7,291 3% 5 million 2,909 685 0.4

Community with EACH, EACHD 3,368 2% 3.4 million 2,005 1,023 0.6

RAC Low care (RCS 5-8) 15,061 7% 20.4 million 11,882 1,355 0.8

RAC High care (RCS1-4) 75,107 33% 113.5 million 66,099 1,512 0.9

Total 227,350 100% 144 million 83,835 1,012 0.6

Volunteers in RAC

13

– 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.

Unpaid informal care

14

• 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

Unpaid informal care

15

• 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.

Value of care for people with dementia 2008

16

Type of care Million hours LOW $ million HIGH $ million

Unpaid informal care 203.4 881.2 5,523.5

Community care (paid) 10.0 248.6 288.1

RAC (paid) 133.9 3,641.0 5,064.3

RAC volunteers 3.7 16.2 16.2

Total 351 million hours $3,987 million $10,892 million

Second task in Making Choices report

17

• 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)

Approach to projections of future dementia care

18

• 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+

Projections of gaps in dementia care (per pwd)

19

-7.0

-6.0

-5.0

-4.0

-3.0

-2.0

-1.0

0.0

1.0

2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 2027 2028 2029

Ho

urs

of c

are

pe

r pw

d p

er w

ee

k

Year

Informal care

HACC

CACP

EACH and EACH D

RAC Low

RAC High

Projections of gaps in informal care

20

0

50,000

100,000

150,000

200,000

250,000

300,000

350,000

400,000

450,000

2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 2027 2028 2029

Ho

urs

of i

nfo

rma

l ca

re p

er

yea

r ('0

00

)

Year

Demand Supply

By 2029, excess demand of 6.6 hours per person with dementia per week

Projections of gaps in RAC

21

0

50,000

100,000

150,000

200,000

250,000

2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 2027 2028 2029

Ho

urs

of c

are

pe

r ye

ar (

'00

0)

Year

Demand Supply

• 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)

3rd task in Making Choices Report

22

• 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.

Choice modelling survey

23

• 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

PROPORTION OF CURRENT CARERS VERSUS PREVIOUS CARERS

Frequency %

Currently providing care for a person with dementia 307 54.4

Previously provided care for a person with dementia 257 45.6

Total 564 100.0

Sample statistics

25

AGE DISTRIBUTION OF SURVEY RESPONDENTS AND RECIPIENTS OF CARE

Respondents Care recipients

% Cum % % Cum %

18-30 15.2 15.2 3.4 3.4

31-40 16.3 31.6 2.1 5.5

41-50 16.7 48.2 2.0 7.4

51-60 24.1 72.3 7.8 15.2

61-70 20.2 92.6 13.1 28.4

71-80 5.7 98.2 32.3 60.6

81-90 1.8 100.0 31.7 92.4

90+ 0.0 100.0 7.6 100.0

Total 100.0 100.0

Sample statistics

26

GEOGRAPHY OF RESPONDENT’S PERMANENT RESIDENCE

Frequency %

State/Territory

NSW 167 29.5

Victoria 113 20.0

Queensland 91 16.2

Western Australia 50 8.9

South Australia 55 9.7

Tasmania 36 6.3

ACT 42 7.5

Northern territory 10 1.8

Regional environment

Inner suburbs of a state/territory capital city 247 43.8

Outer metropolitan area of a state/territory capital city 102 18.1

Large city/town (not a capital) 121 21.5

Small town (less than 10,000 people) 45 8.0

Rural Area 48 8.5

Remote/outback area 1 0.2

Sample statistics

Attributes/levels - community care

27

• 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)

28

Attributes/levels RAC

29

• 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)

30

31

RANKING ON WHETHER RESPONDENTS HAD A CHOICE IN PROVIDING CARE

0

5

10

15

20

25

30

Complete choice 2 3 4 No choice

pro

po

rtio

n o

f sa

mp

le (

%)

Findings- choice in care provision

32

DISTRIBUTION OF HOURS SPENT BY RESPONDENTS PROVIDING INFORMAL CARE

0

5

10

15

20

0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55+

Hours providing informal care

Pro

po

rtio

n o

f re

spo

nd

ents

(%

)

Survey findings

33

IMPACT OF PROVIDING CARE ON EMPLOYMENT

Frequency % of respondents

Get in late, leave early, or take time off work during the day to provide care

161 28.5

Take leave of absence to provide care 115 20.4

Go from working full-time to part-time, or take a less demanding job

74 13.1

Stop working altogether 45 8.0

Turn down a promotion to provide care 47 8.3

Lose any of your job benefits 28 5.0

None of these 111 19.7

Other 13 2.3

Note: Frequency of responses add up to more than the total number of respondents as they were allowed to choose more than one option.

Survey findings

The survey results represent the average

34

• 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 % change in demand

Home Support such as shopping, transport, and cleaning

Not available 0.0 Available once a fortnight 38.8* Available once a week 44.3* Available twice a week 54.5* Dementia care case worker Not available 0.0 Can develop an individual care program and organise care services 24.2* Qualified person who can provide support at home for a specific need Not available 0.0 Available once a month 1.5 Available once a fortnight 13.1* Available once a week 19.9* Community centre that offers counselling, recreational activities, education and information services

Not available 0.0 Available on weekends only 1.6 Available during the working week only 9.5 Available during the working week and on weekends 30.6* Helpline that can provide advice, information, and referral to services Not available 0.0 Available during working hours 13.5* Available between 7am and 10pm 16.9* Available 24 hours a day 18.5* Emotional support for those caring for someone with dementia Not provided 0.0 Provided over the phone by a counsellor 14.5* Provided through group meetings with a counsellor at a clinic 17.2* Provided by a counsellor at a clinic on an individual basis 16.6* Respite care Not available 0.0 Available for emergencies/special events only 25.0* Available daily but only for part of a day at a time 35.4* Available daily and for extended periods of time (including holidays) 48.0*

36

RANKING OF COMMUNITY CARE ATTRIBUTES

0 10 20 30 40 50 60

Qualif ied person - Once a month

Community centre - Weekends only

Community centre - Working w eek only

Qualif ied person - Once a fortnight

Helpline - Working hours only

Emotional support - Over the phone by a counsellor

Emotional support - Clinic on an individual basis

Helpline - Available 7am and 10pm

Emotional support - Group meetings w ith a counsellor

Helpline - 24 hours a day

Qualif ied person - Once a w eek

Case w orker available

Respite - Emergencies/special events only

Community centre - Working w eek and w eekends

Respite - Daily but only for part of the day

Home support - Once a fortnight

Home support - Once a w eek

Respite - Daily for extended periods of time

Home support - Available tw ice a w eek

Impact on probability (% change)

Community care rankings

37

CHANGE IN DEMAND FOR RESIDENTIAL CARE

% change in demand

Distance from residential care

90 minutes 0.0

60 minutes 15.3*

30 minutes 18.6*

10 minutes 25.4*

Demand for RAC

38

CHANGE IN DEMAND FOR RESIDENTIAL CARE

% change in demand

Private facilities

No private facilities (room, bathroom, outdoor) 0.0

Limited private facilities (room only) 20.1*

Some private facilities (room and bathroom only) 51.1*

All private facilities (room, bathroom, and outdoor area) 53.0*

Demand for RAC

39

CHANGE IN DEMAND FOR RESIDENTIAL CARE

% change in demand

Ability to accommodate cultural background and recreational needs

Cannot be met 0.0

On special occasions only 12.5*

On a group basis 17.9*

On an individual basis 30.2*

Demand for RAC

40

CHANGE IN DEMAND FOR RESIDENTIAL CARE

% change in demand

Skills of the staff in providing dementia care

At a minimum standard required by law 0.0

Specialised in providing dementia care 45.7*

Demand for RAC

41

CHANGE IN DEMAND FOR RESIDENTIAL CARE

% change in demand

Capacity to accommodate all stages of dementia

Early and moderate stages of dementia 0.0

All stages of dementia. The resident will not have to move locations as the condition advances 25.3*

Demand for RAC

42

CHANGE IN DEMAND FOR RESIDENTIAL CARE

% change in demand

Visiting hours

Restricted between 8am and 11am and 5pm and 8pm 0.0

Restricted to between 7am and 10pm 17.6*

Fully flexible but family and friends CANNOT stay overnight 8.9

Fully flexible, but family and friends CAN stay overnight 13.5*

Demand for RAC

43

CHANGE IN DEMAND FOR RESIDENTIAL CARE

% change in demand

Bond

$400,000 0.0

$300,000 8.3

$200,000 19.9*

$100,000 13.2*

Demand for RAC

44

RANKING OF RESIDENTIAL CARE ATTRIBUTES

0 10 20 30 40 50 60

Bond - $300,000

Visitng hours - Fully f lexible but cannot stay overnight

Cultural and recreational - Special occassions

Bond - $100,000

Visitng hours - Fully f lexible, can stay overnight

Distance - 60 minutes

Visiting hours - 7am to 10pm

Cultural and recreational - Group basis

Distance - 30 minutes

Bond - $200,000

Private facilities - Room only

Capacity - Can accommodate all stages of dementia

Distance - 10 minutes

Cultural and recreational - Individual basis

Skills - Specialised in providing dementia care

Private facilities - Room and bathroom

Private facilities - Room, bathroom, outdoor

Impact on probability (% change)

RAC rankings

Implications …

45

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

The balance of community and residential care services

46

• 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

Information and consumer support

47

• 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.

Quality dementia care

48

• 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

Workforce options for carers

49

• 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).

Special needs groups

50

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.

Research

51

• The potential for reducing the incidence, prevalence and disability burden of dementia in the longer term will be dependent on research and dementia risk reduction. It is recommended that:– investment in dementia research and prevention should

continue to be expanded; and– awareness of dementia risk reduction is promoted eg,

through the Mind your Mind program.

Develop new financing mechanisms

52

• Future funding of care implies higher taxation (since higher debt is not sustainable long term), service reductions (unlikely to be preferred), or an increase in private provisioning for care services.

• It will become increasingly important for people with the capacity to pay (through accumulated household wealth) to do so, allowing the government to continue to provide a safety net for those without the financial means to cover their dementia care costs.

Evaluation of the Dementia Initiative

53

• 2005 Australian Government Budget Dementia Initiative– Measure 1 - Dementia – A National Health Priority ($70.5 million) – additional research,

improved care initiatives and early intervention programs.– Measure 2 – EACHD ($225.1 million) – 2,000 dementia specific EACH places.– Measure 3 – Training to Care for People with Dementia Program ($25 million) –

additional dementia specific training for up to 9,000 aged care workers, and up to 7,000 carers and community workers.

• AE was part of the consortium commissioned by the Australian Government to undertake an evaluation of the National Dementia Initiative from March 06 to May 09. Two key questions:

– What effect the Dementia Initiative has had on consumers; that is, people with dementia and their carers

– What added value has been given to current dementia care in Australia as a result of the activities funded by the Dementia Initiative.

Access Economics role

54

• Efficiency – did DI programs provide value for money?

• Undertake CBA/CEA• Build an economic model for DOHA to undertake

further analysis• Costs = full costs of delivery of DI including

development, delivery and evaluation• Benefits = health system costs (hospitals, drugs etc);

RAC and community care; unpaid family care; productivity losses; burden of disease.

Economic evaluation

55

• 7 projects evaluated (In-Depth Evaluations)• Varied nature of projects and data availability (or lack

thereof) led to a range of evaluation metrics being used.• Outputs or benefits measured were not comparable across

projects. Eg.• QALYs • Number of publications• Number of students trained• Improvement in work efficiency

• Recommendation arising – adoption of an agreed QoL metric from roll-out phase of future projects

Measure 1

56

• NDSP, DBMAS, DTSCs and DCRC• Economic data comprised:

– cost information provided from program returns and acquittals; and– outcome data from various sources.

• Example NDSP– Cost data from financial reports and funding agreements– Outcome data from surveys and progress reports– Benchmarked KPIs against relevant comparators

• Example DBMAS– Cost data from financial reports and funding agreements– Outcome data from survey of RAC facilities - responses based on

Likert scale converted to DALYs and reported $ per DALY averted

Measure 1 example NDSP

57

Sub-initiative and approx cost (1 Jan 07 to 1 Jul 09 - $2008-09)

KPI

Helpline (over $2million)$/phone call

$/satisfied caller

Dementia and Memory Community Centres and Memory Vans (under $7 million)

$/visitor

$/session

$/satisfied participant

Early intervention/counselling (over $7 million) $/session

$/satisfied participant

Information, awareness, education & training (under $5 million)

$/session

$/participant

$/satisfied participant

Measure 2 EACH-D

58

• Economic and health outcome data were collected. o Costs include government expenditure on packages,

fees paid by package recipients, productivity costs for informal carers and changes to health system costs.

o Benefits include improvements to the quality of life of people with dementia and their informal carers.

• Some benefits difficult to measure (e.g. providing choice of care setting).

• EACHD was compared to Residential Aged Care – the alternative care-pathway for pwd needing a high level of care.

Measure 3 Dementia Caring Pilot

• Evaluated using a combination of CEA and CUA. • Outcome measures:

– number of skills sessions that were run, – the number of participants in skills sessions, – and the Goal Attainment Scale (GAS) measure of participant wellbeing

pre and post skills training.

• The costs:– the program expenditure, and – the cost to participants, which included attendance time and travel

costs.

59

Measure 3 Dementia care essentials

• Evaluated using Cost Effectiveness Analysis (CEA)• Key outcomes/benefits

– Workload efficiency (ability of workers to deal with their workload)– Work quality (workers’ levels of stress, health and quality of life)– Number of students trained

• Costs– Training providers costs (total, and broken down into staffing /

equipment and capital/ operations/other). – Participant costs (time and travel)

• Benefit data were extracted from a survey of training participants on the likely impact on their workload before and after training.

60

Dynamic economic model

61

UNTREATEDPREVALENCE BY SEVERITY

RESEARCHPREVENTIVE TREATMENT

NON-DEMOG RISK/ PROTECTIVEFACTORS

TREATMENT OPTIONS

TREATED PREVALENCEBY SEVERITY

TREATMENTCOSTS BY SEVERITY

IMPACT ON BOD, PRODUCTIVITY, ETC

CEA

Thank you

62