DEMENTIA RESEARCH

1. Negative outcomes for MCI caregivers – Evidence form a systematic literature review DEMENTIA RESEARCH Katrin Seeher, Lee-Fay Low, Simone Reppermund and Henry Brodaty Dementia Collaborative Research Centre – Assessment and Better Care Brain and Ageing Research Program, University of New South Wales Translating dementia research into practice

2. Background • Mild Cognitive Impairment (MCI) has become focus of research • Potential prodromal stage of dementia • Biomarker research • Early interventions/prevention • Can the same paradigm be used for caregivers? Translating dementia research into practice

3. Aims of this review To establish… Translating dementia research into practice pooled prevalence rates of MCI carer outcomes (e.g. depression) predictors of MCI carer outcomes

4. Ψ outcomes in MCI carers - A systematic literature review Medline, EMBASE, Scopus, Cochrane, PubMed, PsycInfo, CINAHL abstracts and titles screened of 266 articles 76 accessed in full-text 10 included in review Translating dementia research into practice

5. Caregiver outcomes considered • Depression  most results • Burden • Anxiety • Quality of Life • CES-D, GDS-S • ZBS, ZBI • STAI-S • SF-36 Outcomes considered Measures used Translating dementia research into practice

6. Prevalence of depressive Sx – general population vs MCI vs dementia carers 5 studies 929 carers Pooled prevalence 23% (11% - 24.6%) 14% - 19% or 9% - 19% 19.7% - 39% General population Dementia carers Schoenmaker et al (2010) MCI carers Translating dementia research into practice

7. Depression in dementia carers Mean CES-D score MCI carers, pooled data over 4 studies (total N=872) Pop. norm+ older community cohorts Dementia carer cohorts included in Schoenmaker et al (2010) Translating dementia research into practice

8. Other ψ outcomes in MCI carers • ? Higher levels of • Burden: ZBI≥21 = 31.4% (Bruce et al., 2008) • Stress: RSS>30 = 10.5% (Rosness et al, 2009) • Anxiety: STAI-S>44 = 11% (Garand et al, 2005) • ? Quality of Life (QoL) (McIllvane et al, 2008) • Mean SF-36 (M) = 51.0 (SD 9.7) • Mean SF-36 (P) = 44.8 (SD 11.2) Translating dementia research into practice

9. Predictors of depression in MCI carers Translating dementia research into practice

10. Predictors of depressive Sx Blieszner et al (2010), Garand et al (2005) and Lu et al (2007) • 3 studies (MCI samples only); 28 predictors in total • 5 predictors included by more than one study • Carers’ age  n.s. • Carers’ education  sig (2/3) β=-0.36 and β=-1.97 • Relationship to patient  n.s. • Behavioural Sx  sig (1/2) β=1.98 • Subjective burden  sig (1/2) β=3.24 Translating dementia research into practice

11. Other predictors analysed by single studies • Physical health • Relational deprivation • Importance of religion • Dementia knowledge • Mastery • Coping • Social support • Patient demographics • Carer demographics (not age) • Carer expectations re aging • Service attitudes • Patients’ cog. function • ADLs/IADLs • Lifestyle constraints • Self-loss • Personal gain SIGNIFICANT NOT SIGNIFICANT Translating dementia research into practice

12. Summary of findings in a nutshell Depressive Sx most widely studied in MCI carers Intermediate stage between NCI and dementia carers Some evidence for existing caregiver stress models also being valid in context of MCI carers Translating dementia research into practice

13. What are the limitations to date? - general Only very few studies to date Only single studies report on carer outcomes such as burden, stress, anxiety Small n, often lacking controls Inconsistent methodology/use of outcome measures All studies to date cross-sectional Translating dementia research into practice

14. What are the limitations to date? – owed to the concept of MCI Lack of variability in predictors due to low rates of cognitive, functional or behavioural impairment in MCI Is there a differential effect of MCI subtypes? MCI ≠ one way street Translating dementia research into practice

15. What are the limitations to date? – due to selection bias • Clinical samples only  i.e. not pre-symptomatic! • Help seeking might reflect higher symptomatology in this population • Largest proportion of carers took part in RCT for donepezil vs vitamin E in aMCI • Majority were spouses • Publication bias Translating dementia research into practice

16. Conclusions Best evidence for depressive Sx These early carers are at high risk for psych distress and burden More research into stress processes in MCI carers is warranted Longitudinal population-based studies are needed Translating dementia research into practice

17. Acknowledgements Supervisors • Prof Henry Brodaty • Dr Lee-Fay Low • Dr Simone Reppermund Research students • Mira Ertl • William Zhang • Julia Mueller Seeher K, Low LF, Reppermund S and Brodaty H: Predictors and outcomes for caregivers of people with MCI – A systematic literature review. Alzheimer’s and Dementia (in press) doi:10.1016/j.jalz.2012.01.012 Translating dementia research into practice

18. ? Dementia. Who gets it? 2012 National Dementia Research Forum Canberra, Australia 27-28 September, 2012 Translating dementia research into practice

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