Dementia a risky business

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Dementia a risky business

• Jill Manthorpe
• Social Care Workforce Research Unit
• Kings College London
• 150 Stamford Street
• London SE1 9NN
• Jill.manthorpe_at_kcl.ac.uk

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Introduction

• Is there a swing to encouraging risk ?
• What does this mean in for people with dementia,
  for carers and for practitioners ?
• Is it new wine in old bottles?

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Old risk

• Possible to manage or eliminate
• Easy to identify
• Became a criterion for services
• Assessment magnified risk likelihood and danger

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New risk

• Green paper (Independence, Well-being Choice)
  and its responses
• Acceptance of risk as part of ordinary life
• Professionals want protection (and carers)
• Better information seen as answer
• 79 supportive of more risk taking (DH Responses
  to the consultations on adult social care in
  England, 2005, p18)
• Guidance on the horizon national risk
  management framework

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Different perspectives

• When asked what they were most concerned about in
  the care home, the residents said choice of food
  and hot drinks being cold
• Relatives were concerned about nutrition and
  meeting medical conditions
• Jones Manthorpe 2003

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The Food for Thought study

• Survey of Alzheimer's Society members
• 2000 replies free text replies analysed by
  Watson, Manthorpe Stimpson

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1. People with dementia

• Cotton wool care ? Or left vulnerable?
• Carers handling of the risks of home based care
• Carers views of the risks of other peoples
  care

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Risk recipes

• I have to see that the gas is turned of at source
  if I leave the house
• I felt like Sherlock Holmes as each day I
  searched the bin to check what she had eaten. On
  one occasion she said the savoury mix in a bowl
  wasnt very nice it was pot pourri

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Balancing risks

• It is hard to cope with dishes of food being
  thrown at you..she refused all medication and
  doctors visits . Eventually she took to lacking
  herself in and barricading herself inshe was
  sectioned for her own safety...Managing herself
  (badly) in a fast changing world, she has coped
  well. She blames me for taking away her freedom
  and independence
• - 70 year old daughter

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3. Barbed wire for staff

• The home care staff would not re-heat the (cook
  chill food) in the microwave because it was said
  of Health and Safety regulations, but would you
  want to eat cold potato, peas and steamed fish?

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Risk managing

• The home keep a wine box for her in the kitchen
  and when she asks they oblige (she has a good
  palate and she can always tell when its watered
  down)

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Blame

• I am not blaming the staff there was not enough
  to feed all those requiring assistance at the
  same time

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Blaming the system

• I do feel it is a balance between them being
  allowed to feed themselves for as long as
  possible with encouragement being given when
  necessary. Unfortunately most residential staff
  do not employ enough staff to do this.

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Risk balancing

• My husband is a compulsive eater of sweet food
  and will go to any length to obtain it.
  Consequent problem for his residential home. He
  searches other residents rooms for sweets. He is
  very carefully supervised but this has to be
  balanced against his need for freedom of movement
  around home and garden.

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What This Means

• Not letting one sided views dominate the debate
• Not searching for the perfect information
• Remembering there is no such thing as safety
• Accepting risk is about chances
• Recalling its often about balancing
• Facing up to risk being about values

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Next Steps

• Consulting - on national risk management
  framework
• Putting Mental Capacity Act into practice
• Testing agencies about the realities of less
  blame more learning
• Watching out for pendulum swings.

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Happy Christmas !

• Food for Thought 2004, Alzheimers Society
• Finger food ideas
• Top tips for carers
• Eating and nutrition
• Journal of Dementia Care articles on mouth care,
  eating out and kitchens