Long term care, the big society and dementia

1. Long term care, the big society and dementia Craig Berry

2. Is the care deficit a giant evil? • Long term care for older people not one of Beveridge’s five giant evils, therefore private or informal care • But ageing and women’s employment has created care deficit for older people • Gradually brought into public sector, but provision is ‘lumpy’ • Perhaps also because care needs are amorphous

3. Care reform and dementia • 2010 white paper on adult social care makes only one reference to dementia, in a case study (but long discussion of big society) • Two fleeting references in Dilnot report, and one reference to ‘cognitive impairment’ • We cannot separate the ‘how’ from the ‘who’ or the ‘what’ • Big society now part of the ‘how’, with assumed relevance for community-based dementia care

4. The big society • Big society idea remains quite abstract • Silent assumption that it is for the mentally well Social productivity = Shift in power + Shift in finance + Shift in culture = social productivity Shift in power + Shift in finance = Shift in culture = Big Society

5. Care is already a big society • The profound importance of informal care to the care economy. £119 billion • £17 billion directly related to dementia (vast majority of dementia economy) • Informal carers paid at poverty level • Social, economic and health impacts of providing care • But care provision will always be a big society (in Scotland, informal care provision increased despite free personal care)

6. Dementia and the big society • Dementia care is already a big society – needs more support from the state, as well as/rather than volunteers • Dementia care will always be a big society • Five additional concerns: • Can the big society diagnose dementia (one of the biggest problems)? It might help in treatment, but cannot diagnose • False dichotomy between central govt/local volunteers. Dementia needs community care, but led by community workers

7. Dementia and the big society • Additional concerns: • Stigma within society is also one of the main problems. Bigger society creates more vulnerability? Safe spaces must be created by the state. • Equal treatment does not matter any less just because care recipients may not appreciate levels of support relative to others. Because big society is already family care, it benefits affluent families • Personalisation means very little in the context of dementia

8. Appendix I: Peter Whitehouse • The Intergenerational School (Ohio). Community-based non-expert intervention • But limited in scope • And who pays? In this case, the taxpayer • Associated with Whitehouse argument that AD is severe brain ageing, not a disease • Intuitively I agree on medicine (AD as exclusionary diagnosis, and no two pathologies are the same) • But risk of normalising rather than eradicating dementia?

9. Does Whitehouse support the big society? Dementia as a normal condition, mitigated by non-expert intervention… • I don’t think so. IGS involves mainstream integration, not army of volunteers helping in their spare time • By necessity, IGS funded by the state – this is social productivity, not big society

10. Appendix II: coalition govt plans • Investment in research – to be welcomed – nothing to do with big society • More training for ‘local’ businesses in helping people with dementia – epitomises the threat of big society • Enables deliberate and inadvertent coaxing. Who regulates? Volunteer carers overseen by volunteer regulators? • The ‘who’ question – who are the people we will be training? Not highly valued staff • Who pays?