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MISUNDERSTANDING DEMENTIA –
 KEY CHALLENGES IN PROVIDING
EVIDENCE BASED DEMENTIA CARE


      Professor Andrew Robinson
        University of Tasmania
Acknowledgements
Research Team + collaborators
•   Professor, Frances McInerney, Australian Catholic University
•   A/Professor Christine Toye, Curtin University of Technology
•   Dr Sharon Andrews, University of Tasmania
•   Dr Chris Stirling, University of Tasmania
•   Professor Michael Ashby, Tasmanian DHHS
•   Susan Leggett, University of Tasmania
•   Dr Claire Eccleston, University of Tasmania
•   Cath Donohue, Australian Catholic University
Funding
• Australian Government Department of Health and Ageing
• Wicking Dementia Research and Education Centre
• Curtin University
The growing significance of aged care


  • Residential aged care a growth industry. Between 2007 – 2020
    demand for residential aged care places predicted to increase by
    40%1

  - 2006-07 govt expenditure in Aus on aged care 0.7% of GDP – will
    grow to 1.9% by 2046-47 (higher than both education and
    defence)2

  - Changing resident profile - Upward shift in age at admission
    associated with increasing dependency and dementia - 36%
    turnover of residents every 12 months3
1. Allen Consulting Group (2002) The Financial Implications of Caring for the Aged to 2020: A report
   commissioned in conjunction with The Myer Foundation Project, 2020
2. Productivity Commission 2008, Trends in Aged Care Services: some implications, Commission Research
   Paper, Canberra.
3. AIHW (2010). Residential aged care in Australia, 2008-2009: a statistical overview.
RACF Profile
Escalating trend to older age admissions, higher dependencies,
  growing separations via death and increasing incidence of
                   residents with dementia.




What is the impact of dementia and what are the implications for
                   the aged care workforce?
Challenges in providing services to people with dementia

• Dementia generally not regarded as a terminal
  condition – ‘dementia is not often fatal in itself”
  (AIHW 2011).
 Difficulties relating to prognostication, illness
  trajectory & identification of proximal cause of
  death.
 Consequences include inadequate pain and
  symptom management, invasive and futile
  diagnostic tests & inappropriate hospitalisations
• Dementia now linked unequivocally to high
  mortality rates (Mitchell et al, 2009)
The link between dementia and palliation



• Need increased attention on palliative
  approaches to care for people with
  dementia (PWD) in RACFs
• A palliative approach involves partnership
  between staff and family.
• Care planning impacted by knowledge of
  dementia
• Knowledge a mediator in care planning
  communication between staff & families –
  will impact on capacity to work together
Our First question


What are the
differences in
dementia knowledge
between RACF staff
and family
members?
Method

Survey RACF staff and family members to ascertain their
knowledge of dementia – implications for their capacity to
collaborate in implementing a palliative approach to care

• We found no single instrument that facilitated a comparative
  evaluation of families’ and formal carers’ knowledge.

• To assess knowledge we adapted the Dementia Knowledge
  Assessment Tool (DKAT) used in Dementia Essentials program.
Method

DKAT2 survey administered in 8 x RACFs (Tas x 2 + Vic x 2 + WA
x 4).

Care (RNs, ENs, PCAs) & other staff (n = 315).
 - Interviewer administered
 - In Tas & Vic RACFs, 70% of all care staff working in the
   facilities responded. In WA RACFs, 39% of care staff
   responded.
Family carers of PWD resident in the same 8 RACFs (n = 163).
 - Tas and Vic: 3rd party recruitment and surveys mailed to their
   home address, 52% response rate
 - WA: surveys mailed to their home address, 28% response rate
Staff profile               Family carer profile
• 82% female                •   57% female
• 20% NESB                  •   2% NESB
• 24% aged < 36, 18% aged   •   64% are aged > 55 (26% are
  > 55                          > 65)
• 13% RNs, 14% ENs          •   15% spouse
• 39% have TAFE             •   56% daughter/son
  certificate               •   46% have education beyond
                                year 12
Findings: Staff and family carer training
Findings: Staff and family carer training
Findings: Comparative knowledge % correct

    Dementia Knowledge Assessment Tool version 2            Staff   Family

 Dementia occurs because of changes in the brain            98%      98%
                                                            (314)    (155)



 Only older adults develop dementia                         90%      85%
                                                            (311)    (153)



 Brain changes causing dementia are often progressive       90%      93%
                                                            (315)    (156)


 When a person has late stage dementia, families can        85%      80%
 often help others to understand that person's needs        (313)    (156)



 Uncharacteristic distressing behaviours may occur in       96%      92%
 people who have dementia (e.g. aggressive behaviour in a   (315)    (155)
 gentle person)

 A person who has dementia can often be supported to        85%      88%
 make choices (e.g. what clothes to wear)                   (314)    (154)
Findings: Comparative knowledge
Findings: Comparative knowledge
Findings: Comparative knowledge
Findings: Comparative knowledge
Findings: Comparative knowledge
Findings: Comparative knowledge
Findings: Comparative knowledge
Findings: Comparative knowledge
Comparison of RACF staff & family carer knowledge
The impact of education on staff knowledge
Conclusion & future study



Knowledge of dementia among RACF staff and families is in
general poor.

To institute a palliative approach to the care of people with
dementia resident in aged care facilities it will be important to
address these knowledge deficits

Staff education is important but given the findings is it effective?

What might be the impact of education for family carers?

Need to ascertain GPs knowledge of dementia and if necessary
institute remedial action
www.utas.edu.au/wicking

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4 new- robinson- ifa 1

  • 1. MISUNDERSTANDING DEMENTIA – KEY CHALLENGES IN PROVIDING EVIDENCE BASED DEMENTIA CARE Professor Andrew Robinson University of Tasmania
  • 2. Acknowledgements Research Team + collaborators • Professor, Frances McInerney, Australian Catholic University • A/Professor Christine Toye, Curtin University of Technology • Dr Sharon Andrews, University of Tasmania • Dr Chris Stirling, University of Tasmania • Professor Michael Ashby, Tasmanian DHHS • Susan Leggett, University of Tasmania • Dr Claire Eccleston, University of Tasmania • Cath Donohue, Australian Catholic University Funding • Australian Government Department of Health and Ageing • Wicking Dementia Research and Education Centre • Curtin University
  • 3. The growing significance of aged care • Residential aged care a growth industry. Between 2007 – 2020 demand for residential aged care places predicted to increase by 40%1 - 2006-07 govt expenditure in Aus on aged care 0.7% of GDP – will grow to 1.9% by 2046-47 (higher than both education and defence)2 - Changing resident profile - Upward shift in age at admission associated with increasing dependency and dementia - 36% turnover of residents every 12 months3 1. Allen Consulting Group (2002) The Financial Implications of Caring for the Aged to 2020: A report commissioned in conjunction with The Myer Foundation Project, 2020 2. Productivity Commission 2008, Trends in Aged Care Services: some implications, Commission Research Paper, Canberra. 3. AIHW (2010). Residential aged care in Australia, 2008-2009: a statistical overview.
  • 4. RACF Profile Escalating trend to older age admissions, higher dependencies, growing separations via death and increasing incidence of residents with dementia. What is the impact of dementia and what are the implications for the aged care workforce?
  • 5. Challenges in providing services to people with dementia • Dementia generally not regarded as a terminal condition – ‘dementia is not often fatal in itself” (AIHW 2011). Difficulties relating to prognostication, illness trajectory & identification of proximal cause of death. Consequences include inadequate pain and symptom management, invasive and futile diagnostic tests & inappropriate hospitalisations • Dementia now linked unequivocally to high mortality rates (Mitchell et al, 2009)
  • 6. The link between dementia and palliation • Need increased attention on palliative approaches to care for people with dementia (PWD) in RACFs • A palliative approach involves partnership between staff and family. • Care planning impacted by knowledge of dementia • Knowledge a mediator in care planning communication between staff & families – will impact on capacity to work together
  • 7. Our First question What are the differences in dementia knowledge between RACF staff and family members?
  • 8. Method Survey RACF staff and family members to ascertain their knowledge of dementia – implications for their capacity to collaborate in implementing a palliative approach to care • We found no single instrument that facilitated a comparative evaluation of families’ and formal carers’ knowledge. • To assess knowledge we adapted the Dementia Knowledge Assessment Tool (DKAT) used in Dementia Essentials program.
  • 9. Method DKAT2 survey administered in 8 x RACFs (Tas x 2 + Vic x 2 + WA x 4). Care (RNs, ENs, PCAs) & other staff (n = 315). - Interviewer administered - In Tas & Vic RACFs, 70% of all care staff working in the facilities responded. In WA RACFs, 39% of care staff responded. Family carers of PWD resident in the same 8 RACFs (n = 163). - Tas and Vic: 3rd party recruitment and surveys mailed to their home address, 52% response rate - WA: surveys mailed to their home address, 28% response rate
  • 10. Staff profile Family carer profile • 82% female • 57% female • 20% NESB • 2% NESB • 24% aged < 36, 18% aged • 64% are aged > 55 (26% are > 55 > 65) • 13% RNs, 14% ENs • 15% spouse • 39% have TAFE • 56% daughter/son certificate • 46% have education beyond year 12
  • 11. Findings: Staff and family carer training
  • 12. Findings: Staff and family carer training
  • 13. Findings: Comparative knowledge % correct Dementia Knowledge Assessment Tool version 2 Staff Family Dementia occurs because of changes in the brain 98% 98% (314) (155) Only older adults develop dementia 90% 85% (311) (153) Brain changes causing dementia are often progressive 90% 93% (315) (156) When a person has late stage dementia, families can 85% 80% often help others to understand that person's needs (313) (156) Uncharacteristic distressing behaviours may occur in 96% 92% people who have dementia (e.g. aggressive behaviour in a (315) (155) gentle person) A person who has dementia can often be supported to 85% 88% make choices (e.g. what clothes to wear) (314) (154)
  • 22. Comparison of RACF staff & family carer knowledge
  • 23. The impact of education on staff knowledge
  • 24. Conclusion & future study Knowledge of dementia among RACF staff and families is in general poor. To institute a palliative approach to the care of people with dementia resident in aged care facilities it will be important to address these knowledge deficits Staff education is important but given the findings is it effective? What might be the impact of education for family carers? Need to ascertain GPs knowledge of dementia and if necessary institute remedial action