Parkinson’s and Dementia Steve Ford Chief Executive, Parkinson’s UK DAA Quarterly Meeting, February 2014

Living with a six fold risk Dementia is likely for people with Parkinson’s x 6 population risk 50 per cent of people with Parkinson’s after 8 years 80 per cent of people with Parkinson’s after 20 years Lewy body type most common per cent of dementias

Dementia challenges to living well Two types of dementia known as Lewy body dementias: Dementia with Lewy bodies (DLB) Parkinson’s dementia (PDD) Impact on executive function more than memory + Visual hallucinations Fluctuating attention Sensitivity to antipsychotic drugs Sleep disorder parkinsonism (slowness and stiffness)

Societal/system challenges to living well Stigma of dementia Low awareness of Lewy body dementias Delayed and inaccurate diagnosis Poor management and support of condition Health and social care: Not person-centred Fragmented (poor links between movement and mental healthcare services) Narrowly focused (condition-specific not holistic)

Cultural Challenge for Parkinson’s UK Change of ethos since Parkinson’s Disease Society Move from medical model to self-management and co production Talking about dementia is ‘too scary’ How do we empower people and not overload them? Expanded vision from neurology/movement  mental health  whole life wellbeing

Greater strategic emphasis on dementia Membership of DAA Partnership with Lewy Body Society New strategy themes Taking control Delivering excellence / leadership Research Credit Suisse Social research Pathway work on dementia and end of life care

Opportunities Political leverage (G8) Department of Health Dementia Research Champions Group Neurological commissioning support Strategic clinical networks Localism International collaborations Parkinson’s nurses

Synergy with DAA Alignment of values National dementia declaration Action orientated - to change ‘intolerable situations’ NHS Continuing Healthcare Get It On Time (hospitals and care homes) Local infrastructure Track record of working with experts by experience Support for carers