Penny Taylor, Associate Director

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Future dementia care and evaluating the
efficiency of the Dementia Initiative

• Penny Taylor, Associate Director
• Access Economics
• 04 June 2009

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Making choicesFuture dementia care projections,
problems and preferences

• Access Economics report for Alzheimers Australia

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InterGenerational Report 22007

• IGR2 population 65 increases from 8.5 1967
  to 13.4 2007 25.3 2047

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Dependency ratios

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

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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)

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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.

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Primary carers 2003
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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

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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

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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)

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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)

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Formal (paid) care for people with dementia 2008
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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.

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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

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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.

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Value of care for people with dementia 2008
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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)

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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

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Projections of gaps in dementia care (per pwd)
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Projections of gaps in informal care
By 2029, excess demand of 6.6 hours per person
with dementia per week
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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)

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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.

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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.

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Sample statistics
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Sample statistics
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Sample statistics
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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)

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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 flexibleovernight 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)

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Findings- choice in care provision
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Survey findings
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Survey findings
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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.

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Demand for community care

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Community care rankings
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Demand for RAC
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Demand for RAC
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Demand for RAC
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Demand for RAC
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Demand for RAC
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Demand for RAC
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Demand for RAC
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RAC rankings
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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

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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

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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.

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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

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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).

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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.

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Research

• 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.

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Develop new financing mechanisms

• 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.

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Evaluation of the Dementia Initiative

• 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.

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Access Economics role

• 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.

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Economic evaluation

• 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

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Measure 1

• 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

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Measure 1 example NDSP
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Measure 2 EACH-D

• Economic and health outcome data were collected.
• Costs include government expenditure on packages,
  fees paid by package recipients, productivity
  costs for informal carers and changes to health
  system costs.
• 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.

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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.

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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.

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Dynamic economic model
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Thank you