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Parkinson’s and Dementia

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

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Parkinson’s and Dementia

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

  2. 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 • Lewybody type most common • 10-15 per cent of dementias

  3. 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)

  4. 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)

  5. 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

  6. 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

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

  8. 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

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