alz.co.uk/1066

1. www.alz.co.uk/1066

2. Publications by data source (includes manuscripts under submission)

3. What is new? • New prevalence phase projects in Lebanon, Singapore and Portugal. Incidence in Puerto Rico and Nigeria • INDEP project funded for China, Mexico, Peru and Nigeria • Studies the economic and social impact on whole households of the onset of needs for care in an older adult • First incidence wave papers • Mortality (PLOS Medicine) • Dementia • APOE and dementia

4. 10/66 10 years on • Prevalence wave (baseline) was conducted 2003-2006 • New prevalence wave in each catchment area 2013-2016 • Trends in diagnoses, socioeconomic trends, treatment gap, compression of morbidity • Long term incidence/ survival from original baseline • New baseline (improve quality of biomarkers)

5. Four approaches to intervention • Components of care • Helping Carers to Care (but delivered by CHWs) • Cognitive stimulation integrated with HC2C? • WHO mhGAP package of care for dementia? • Working across health conditions to limit and manage needs for care? • What do you think?

6. 10/66 INDEP studyThe economic and social effects of care dependence in late life Dra Mariella Guerra Instituto de la Memoria, Lima, Peru Centre for Global Mental Health King’s College London 1066drg@iop.kcl.ac.uk

7. Needs for care in the 10/66 DRG studies • 5-15% of older people have needs for care • Care provided mainly by women, more often children than spouses • Large, multigenerational households • High levels of carer strain • A high proportion of carers report giving up or cutting back on work to care (or employing paid carers)

8. Care arrangements in the 10/66 INDEP sites

9. 10/66 INDEP study • China, Nigeria, Peru, Mexico • Whether, and how the onset of care dependence in an older resident leads to impoverishment at HOUSEHOLD level • What makes some households resilient? • Intergenerational effects? • How do families decide/ allocate caregiving roles (‘family bargaining’? • Role of local and national policy and provision in mitigating consequences

10. Why is this important • Links ageing, dementia and other chronic diseases and needs of care, to mainstream human health and development agenda • Effects at HOUSEHOLD level, across age groups and generations • Funded by UK Department for International Development and Economic and Social Research Council (DFID/ ESRC) poverty alleviation program • ADI and HelpAge International are NGO partners • Peter Lloyd Sherlock, University of East Anglia, expert on pensions and social protection • Mariella Guerra, Richard Uwakwe (Nigeria), Ana Luisa Sosa (Mexico), Yueqin Huang and Zhaorui Liu (China), Martin Prince, Cleusa Ferri, Joanna Murray (London)

11. Option 1 – Helping Carers to Care • Use what there is • Extended role for existing outreach services • Families • ‘Low level’ interventions • 5 sessions in 8 weeks • Increase awareness and understanding • Mobilise support networks, improve family cohesion • Basic management strategies in the home

12. ‘Helping carers to care’ - rationale • Carer strain is a major problem, strongly associated with behavioural and psychological problems in the person with dementia • Profound lack of knowledge and understanding of the problem • Qualitative narratives suggest • need for information and support • stigma, shame and blame • Developed country studies indicate reduced carer strain, carer depression, and delayed instituionalisation • Promising findings from 10/66 HC2C trials in India, Russia and Peru

13. Option 2- Cognitive stimulation therapy, integrated with HC2C Structured discussion, games, activities Mainly delivered as group intervention, by professionals One positive trial of individual cognitive stimulation, administered by carers in the community 26 weeks, three 30 minutes sessions weekly Similar effect size to that achieved by acetylcholinesterase inhibitors

14. Integrated HC2C/ Cognitive stimulation - rationale • Cognitive stimulation improves outcomes for people with dementia • HC2C improves outcomes for carers, but less evidence for any direct beneficial effect on the care recipient • Caregiver interventions are most effective when they involve joint working with the caregiver and care recipient • Cognitive stimulation impacts most on language and communication • The two interventions could easily be integrated into a single package, with strong potential for synergy – improvement in QoL of both carer and care recipient

15. Option 3 – Packages of care for dementia • Casefinding • Brief diagnostic screening assessment • Making the diagnosis well – information and support • Attention to physical comorbidity • Carer interventions (carer strain) • Cognitive stimulation • Non-pharmacological interventions for behavioural and psychological symptoms Prince et al, PLOS Medicine 2010 Dua et al, PLOS Medicine 2011

16. Packages of care for dementia - rationale • People with dementia and their carers are not seeking help • The primary care system does not meet their needs • Interventions will not/ cannot be picked up and used unless there is a delivery system oriented to continuing care • Diagnosis is of no benefit unless accompanied by timely information, support and evidence-based intervention • Supported by WHO (mhGAP)

17. Medical help-seeking by people with dementia and their carers

18. VERTICAL (HEALTH CONDITIONS) Dementia Stroke Parkinson’s disease Depression Arthritis and other limb conditions Anaemia HORIZONTAL (IMPAIRMENTS) Communication Disorientation Behaviour disturbance Sleep disturbance Immobility Incontinence Nutrition/ Hydration Caregiver knowledge Caregiver strain Option 4 – Working across health conditions to prevent and manage dependence

19. Working across health conditions - rationale • Vertical interventions are difficult to sell • Do we really need separate intervention packages for dementia, stroke, Parkinson’s disease etc? • ‘People who need care’ are easy to recognise, but are currently not well served by primary healthcare • Dementia is the most common underlying condition, but comorbidity with other chronic physical and mental disorders is common • Elements of dementia care package will be incorporated, with additional focus on e.g. incontinence, immobility, nutrition, deafness and blindness • Development of evidence-based guidelines also supported by WHO

20. Summary • Option 1 – Helping Carers to Care (HC2C) • Option 2 – Cognitive stimulation integrated with HC2C • Option 3 – Package of care for dementia • Option 4 – Working across health conditions to prevent and manage dependence Questions • Rate these for • Potential to benefit the person with dementia • Potential to benefit the carer and the family • Feasibility to be delivered by non-specialists in primary care • Likelihood of ‘buy-in’ by policymakers, and successful scaling up across the health system • Your overall preference • What do you like about the intervention • What don’t you like/ any barriers or problems