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

•10-15 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