‘I’ve been in charge of this body for over 70 years but every time I go into hospital I’m expected to leave my responsibility at the door.’

Florence, 79 years

What undesirable events may be experienced….

• Headache• Stomach upsets, feeling sick, vomiting…• Skin rash or itch…• Hair loss or discolouration…• Discolouration of the mucus membranes..• Blurring or complete loss of vision…• Dizziness or light-headedness…• Hearing loss and tinnitus…

Do not be alarmed by this list.

Medicines information problemsNational Patient Survey 2003

0

20

40

60

80

100

Lack of patientinvolvement

How to takemedicine

Purpose ofmedicine

Side effects

Outcome measures for anti-cholinesterase drugs from a professional perspective

• An improvement of at least 3 points on the ADCog.

• Delay in admission to institutional care

• Maintenance of ADLs

What people affected by dementia want from a medicine.

• Improvements in mood

• Increased confidence

• Reduction in fear and distress

J Cream, H Cayton CPD Bulletin 2001: 2(3)

Do carer’s interests matter?

• Reduction in caring for challenging behaviours

• Reduction in anxiety

• Improved sleep

Realistic expectations

‘People with Alzheimer’s and their carers are realistic…they recognise that a cure is not available and are modest in what they ask for…People attribute great value to small every day improvements’

J Cream, H Cayton CPD Bulletin 2001 2(3) 80-82

Benefits of user defined outcomes

• They meet people’s needs more precisely

• They are likely to be realistic

• They relate to the context of people’s lives

• Concordance will be greater

Thus they will be clinically and cost effective.

Trust me, I’m a patient