NEWCASTLE CHALLENGING BEHAVIOUR TEAM

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NEWCASTLE CHALLENGING BEHAVIOUR TEAM

• Lorna Mackenzie Terri Smith, Clinical Leads
• Margaret Milburn, Karen Robson David Symonds
• Challenging Behaviour Nurse Specialists
• Ian James, Clinical Psychologist

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Psychology Trainees

• Newcastle University
• Joanna Cunningham
• Ruth Elvish
• Anna Waterworth

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Service Aims

• Treat CB in a competent and staff-centred,
  person-focussed manner
• Provide a biopsychosocial model of care in which
  pharmacological and non-pharmacological
  interventions are given as part of a rational
  treatment plan
• Treat CB in the setting, as the settings are
  often linked to the CB
• - Work collaboratively with care facilities to
  improve the well-being
• Prevent unnecessary admissions to hospital
• Facilitate effective discharges from hospital to
  care settings
• Facilitate transfers of patients to appropriate
  care settings (from hospital to care facilities
  and between care facilities)
• - Develop links with statutory/regulatory
  organizations (eg. CQC).

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Teaching/Training
Supervision/Consultancy
Clinical Work Staff-centred, patient focused
Dissemination
Research/Audit
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Clinical Context

• Highly complex group of patients
• Inappropriate settings inappropriate staff
• Inappropriate treatments
• Pharmacological
• Non-pharmacological

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KEY FACTORS IMPACTING ON OUR CLIENT GROUP
Financial issues
Sensory loss
Intellectual decline
Mental healthissues
Inadequate resources
Physical decline
CLIENT in care home
Loss of insight
Poor treatmentregimes
Polypharmacy
Loss
Inappropriate environments
Care staff related issues
Complex life histories
Reduced communicationabilities
Lack of shared sense of reality
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Categories of CB from audit
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Treatment strategies
Drug treatment for a physical/mental health cause
Tranquilisation sedation to reduce activity
CB
Psychological
Care practices
Environmental modification
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Psychological Approaches

• Formulation-led Interventions
• BT/Functional analytical
• Unmet needs model
• CBT
• Interpersonal therapy

• Preventative Pogrammes
• Reality orientation
• Reminiscence
• Validation
• Life review
• Aromatherapy
• Dance
• Art, Music
• Dolls

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Unmet needs model
Risks
C. beh. Behaviouralexpression of need
Persons perception of her reality
Degree of disruption
Need
Violation of rules regulations
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• Lying to people with dementia developing ethical
  guidelines for care settings
• Newcastle
• Challenging Behaviour Service

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Who?

• Quiz

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What constitutes a lie?

• Different types of lies (Vrij, 2000)
• Subtle lying Literal truths aimed to mislead,
  or
• concealment of the truth
• Outright lying incorrect information given
  intentionally which is different to the facts
• I need to go home to collect the kids from
  school.
• I need to know that my husband is all right.
  Hes not been well?

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Blums Categories - Nature of deception 1.
Going Along Not challenging ideas that are
factually incorrect in everyday reality or
hallucinations. May involve omitting the truth A
person with dementia asks to see her deceased
mother. The carer responds, she is not here
right now. 2. Not Telling Keeping impending
events from a person with dementia. It is a
preventive action on the part of the carer. An
omission of the truth. Not telling a person with
dementia that they have an appointment with the
doctor until they are due to leave. 3. Little
White Lies An untrue verbal statement. A
woman with dementia is refusing to get up. A
carer tells her that her daughter is going to
visit later. 4. Tricks An action on the part
of the carer that relies on a lack of reasoning
ability on the part of the person with
dementia. A person with dementia insists on
always wearing the same trousers (even at night).
Following a bath, a carer removes the trousers
and claims that she cannot find them
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Previous research

• Hasselkus (1997) found staff working in dementia
  care settings used a variety of responses to
  maintain patients safety, including deception
• Blum (1994) deception is widespread among
  family caregivers as the person with dementia
  becomes more disorientated and difficult to
  reason with
• Kitwood (1997) critical of an Alzheimer culture
  - deceptive practices are widely taken for
  granted
• - malignant social psychology

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Four studies

• Survey (James et al, 2006 In J. Geriatric
  Psych.)
• Staffs perceptions (Cunningham et al, 2005)
• Changing perceptions/development of a
  questionnaire Coronation street study (Elvish
  et al, in press - Ageing Mental Health)
• People with dementias perceptions (Waterworth et
  al. 2009)
• Publications in PSIGE Newsletter, Journal of
  Dementia Care

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Study 1

• Aims of the study
• Methodology
• Results - lies told
• - frequency
• - other factors
• - qualitative data
• Discussion of findings, application of findings,
  ethical implications

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Aims of study

• Explore issue of lying within dementia care
  settings (building upon pilot)
• Investigate prevalence of lies within care
  settings
• Reasons why people lie to people in care
• Other factors influencing lie-telling
• Potential problems of lying
• Guidelines for lie telling
• Bring the issue into the open.

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Methodology

• Participants
• 112 participants (64 NE England, 58 S.Ireland)
• Various care settings- residential homes, EMI,
  hospital wards
• Demographics
• -age range 27-60,
• -approx 21 females males
• -Care staff, psychologists, RMNs, RGNs,
  Consultants, Doctors, Managers, OTs, RPNs, cog
  behav therapists

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Methodology

• Materials
• Questionnaire developed for study, piloted in a
  previous study
• Frequency of lies told by self, reasons
• Frequency of colleague lies, reasons
• Considerations more/less likely for lie to be
  told
• Line manager
• Beneficial lies
• Guidelines/policies

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Methodology

• Procedure
• The majority of participants were recruited
  during workshops
• Questionnaire was given as an experiential
  exercise at the start of workshops
• Return rate varied from between 73 - 95.

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Results

• 4 of the 112 participants stated they did not
  lie.
• Of these 4, 2 noted that their colleagues did.
• Therefore only 2 stated that neither they nor
  their colleagues lied.
• It is therefore evident that lying is pervasive
  across all type of homes and professional
  groupings.

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Results

• It is evident that there are different
  circumstances in which staff are prepared to lie.
• Lies occur most frequently when they are aimed at
  reducing resident distress
• Lies told to save time were less common.

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Results

• Factors influencing the telling of lies
• The resident would become distressed if told the
  truth
• The resident would become aggressive if told the
  truth

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Results- nature and consequences

• 93 thought lying could be beneficial
• - reduce concern when asking about deceased loved
  ones
• - when looking for family
• - improve compliance with care needs
• - reduce desire to leave
• - improve medication compliance
• Your husband has gone fishing and will be back
  later
• Heres the chiropodist you agreed to see - shed
  not actually agreed to see the chiropodist

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Results- nature and consequences

• 88 acknowledged there could be problems
  associated with lying in this context
• - increase confusion due to lack of consistency
• - increase residents distress
• - cause friction between parties
• - cause distrust
• - recognised as a lie by some residents
• - problematic for carers
• If the lie is remembered and proves false, this
  can cause major problems
• Not everybody is telling the client the same
  lie

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Policies and procedures

• 81 of participants felt comfortable in telling
  their manager that they had lied
• 85 stated they would welcome guidelines on lying
• Only 24 were aware of existing policies or
  guidelines on lying
• 52 offered suggestions as to the content of
  guidelines on lying

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Coronation Street Study 2/3

• Data from Grounded theory project
• Questionnaire
• Video of Mike Baldwin
• Debate
• Pre/post administration of a questionnaire

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• Most highly endorsed statements
• It is acceptable to lie in an emergency when
  there is a risk that a person might injure
  himself.
• Lies are sometimes acceptable.
• Certain types of lie are more acceptable than
  others 
• It is acceptable to lie to prevent a person from
  harming himself. 
• Lies of any form are always wrong.a
• Lies designed to ease the distress of the
  individual are acceptable. 
• It is acceptable to lie if the staff have a
  really good knowledge of the person and are aware
  of what approach usually works best for him. 

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Theme (Elvish) Participants recognised that lying
can be beneficial in certain situations, despite
them still being uncomfortable about the idea of
using a lie. Changes were made in how
participants defined a lie. Participants
acknowledged that frontline care staff need
practical and achievable strategies. Participants
became more comfortable with acknowledging their
own use of lies. Participants recognised that
lying can be used to relieve a professionals own
distress.
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Self Perceptions Study 4

• Qualitative, grounded theory study
• Focus group (N4)
• Interview (N8)
• Anna Waterworth

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The Person with Dementia

• Their awareness of lies
• It would make them more upset, when they
  realise its a lie. (Abigail)
• The impact of the lie on peoples experiences of
  dementia
• Negative
• E.g. Relationships, self concept
• Positive
• Reduces truth-related distress
• Personal beliefs
• The truth, the truth, you cannot beat the
  truth, cause it comes out somewhere, sometime.
  (Theresa)
• Its human to lie. Why should we be treated
  differently.

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The Carer

• Who is lying and why?
• Most participants were more upset by the thought
  of a relative or close friend lying
• I wouldnt like a family member lying to
  usbecause we have never ever done that, we have
  never lied to each other. (Theresa)
• How do they lie (intentionality)?
• Maintain personhood
• Individually (Husband has gone to shops!!!!)

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The Nature of the Lie

• Different types of lies (white lies, bending the
  truth, economical, out-right)
• Deceptive practices (hiding things, covering
  things up, painting doors, removing handles)
• Reframing deceptive practices whose interests?
  Be up-front! Own up to them and dont hide behind
  them.

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Reflection on results

• Guidelines

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12 Guidelines (Mackenzie et al, 2004)

• 1. In the best interest of the resident e.g. to
  ease distress.
• 2. Use requires care planning.
• 3. A clear definition of what constitutes a lie
  should be agreed within each setting.
• 4. Consideration should be given to cognitive
  capacity, such as a residents ability to retain
  the truth.

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Guidelines cont.

• 5. Communication with family and consent gained.
• 6. Once a lie has been agreed it must be used
• consistently.
• 7.  All lies told should be documented.
• 8. An individualised and flexible approach should
• be adopted towards each case the relative
  costs and benefits.

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Guidelines cont.

• 9. Staff should feel supported by manager and
  family.
• 10. Circumstances in which a lie should not be
  told
• should be outlined and documented.
• 11. The act of telling lies should not lead staff
  to
• disrespect the residents.
• 12. Staff should receive training.

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Alternatives

• When considering the ethics of lying, we must
  also consider the ethics of alternatives, one of
  which is the use of medication.
• If distraction is not effective, the present
  treatment of choice is the administration of
  medication.
• Recent reviews have shown (e.g. Sink et al, 2005)
  that the use of neuroleptics for management of
  BPSD is problematic.
• Therefore, if telling a lie has similar
  stress-reducing properties with fewer side
  effects to medication then lie telling could
  arguably be considered as more ethical.

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To lie or not to lie

• Clearly lying to people with dementia within care
  homes is a controversial topic
• However, it is evident that lying occurs in many
  care homes, therefore the issue should not be
  swept under the rug.
• Additionally, despite an acknowledgement of
  problems by care staff, lying is also viewed as a
  positive strategy by many staff members.
• We intend to take this work forward and, further,
  hope to open a healthy debate surrounding an area
  that to date has largely been ignored.

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Common un-truths within dementia care

• Marzanski (2000) reported that old age
  psychiatrists rarely or only sometimes
  informed their patients about the diagnosis of
  dementia, and almost never about the prognosis.
  Providing information depended on the level of
  impairment.
• Guidelines state that medication can be given
  covertly in some circumstances
• Doll therapy - are we deceiving people?
• Environmental lies - a door painted as a piano,
  circular layouts of homes
• Practical lies - old pension book, false keys

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When to lie?

• Truth should be trialled as the first approach,
  before lies
• 4 stage engagement strategy
• Stage 1 - Initially identify the persons need
  and attempt to meet the need directly (If the
  person wants to see her son ask son to visit).
• Stage 2 If unable to meet the need, attempt to
  simulate/substitute the need (If person wants to
  see her deceased mother, hypothesise that the
  underlying need may be able feeling insecure.
  Hence, attempt to provide security in some other
  way).
• Stage 3 If simulation unsuccessful, distract
  the person if possible, moving their focus to
  some other thing or person (If current focus is
  wanting mother, can we shift mental focus onto
  helping set the table for meal time).
• Stage 4 If unable to distract, consider using a
  therapeutic lie.