'Toileting difficulties or incontinence?
Changing the landscape of dementia care'.
Professor Graham Stokes, Director of Dementia Care.
Bupa Care Services, UK
Introduction
Is incontinence an early onset problem in dementia?
In most cases the answer is no.
Are toileting difficulties to be expected early in the process of
decline?
For many people the answer is yes.
Are these incompatible responses to the same question, or
can we draw a distinction between a toileting difficulty and
incontinence?
Summary
We are going to examine these differences and
examine why a person with dementia may start to
urinate and soil in the “wrong” places.
In the process we will reveal that the achievement
and maintenance of continence is a complex skill.
A skill that may be severely and irrevocably
compromised in dementia, especially if we view
dementia as an insurmountable obstacle to
understanding who people with dementia are and
why they do what they do.
Contemporary understanding of dementia
Pathology-centred model of dementia – traditional. Dating
back to Arnold Pick in 1892, Otto Binswanger in 1894 and
Alois Alzheimer in 1906.
Person-centred model of dementia – a reconsideration.
Over past 25 years has delivered a paradigm shift.
Behavioural definition
The voiding of urine or faeces
following either an unsuccessful effort,
or with no apparent attempt to employ
an acceptable facility (e.g. toilet,
commode, urine bottle).
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Behavioural Characteristics
Parcelling (e.g. wrapping and concealing the evidence in drawers,
cupboards, etc.)
Wetting or soiling clothes - while sitting or lying in bed (passive)
Wetting or soiling clothes - while standing/walking (active)
Using an inappropriate receptacle (e.g. bin, fire bucket, sink)
Urinating against wall or radiator
Smearing
A technique known as pinpointing
The Essential Pathway to Successful Toileting
Recognising the need to initiate and postponing within limits the
act of voiding (failure = incontinence)
Being motivated to use the toilet
Possessing the physical strength and steadiness to stand
Possessing the mobility and confidence to cover the distance to
the toilet and overcome any obstacles along the way (e.g. floor
coverings, stairs, out-stretched legs of others)
Maintaining goal-oriented behaviour
Being able to locate the toilet (or acceptable alternative)
The Essential Pathway to Successful Toileting (contd.)
Perceiving and experiencing the toilet as accessible, safe, hygienic and
private
Women who squat to avoid making contact with the toilet seat - 72.6%
sometimes or always.
Women who place toilet paper on the seat before sitting on it - 60.8%
Women who wipe round the toilet seat prior to using it - 83.6%
Women who avoid touching the flush handle by using, e.g. paper or another
part of their anatomy - 56.1%
When washing their hands, women who avoid touching the taps by using
their wrists to turn taps on and off - 44.0%
Women who on leaving the toilet avoid touching the door handle – 47.3%
The Essential Pathway to Successful Toileting (contd.)
What puts women off from using a public toilet?
The toilet cubicle is open at the top or bottom - 47.8%
The toilet has not been flushed - 88.9%
There is no toilet paper - 90.1%
It is smelly - 89.1%
It is cold - 33.0%
The floor is wet - 82.4%
The floor is littered with toilet paper - 78.0%
The Essential Pathway to Successful Toileting (contd.)
• Possessing the dexterity and co-ordination to adjust clothing
• Initiating the act of voiding.
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Methodology of understanding
Behaviour analysis (ABC) – the setting event – the what, the where,
the who.
Functional analysis – understanding why?
Appreciative Inquiry
Toileting difficulty. A taxonomy of possible explanations (i)
•
Incontinence - a localized physical abnormality (e.g. urinary tract infection,
enlarged prostate gland, constipation), cortical atrophy, nocturnal enuresis)
•
Neuropsychological
•
Sensory disability
•
Physical disability – mobility and dexterity
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Toileting difficulty. A taxonomy of possible explanations (ii)
• Medication effects – sedatives, anti depressants, diuretics
• Mood
• Built environment – distance, obstacles, visual access, signage
• Social environment – actions and attitudes of others
• Psychological factors – personality, habits, life experience.
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From problem to need
Problems are negative
The language of need is positive, placing us on the road of
rehabilitation-recovery facing in the right direction
A statement of intent, not a lifeless statement of fact.
Why can’t the person meet their own need – personal, health,
dementia, environmental reasons – and what can be done to resolve or
assist?
Goal is assisted independence.
Functional Analysis - Mr. G: a man to be known
2 week baseline period - 47 violent episodes
Behavioural (ABC) analysis revealed 95% of assaults
were against care staff
89% of incidents related to toileting
Severe dementia (MMSE score - 7:30)
Toilets located in corridors. Limited visual access.
Environment not legible.
(Stokes 2008)
Functional Analysis - Mr. G: a man to be known. Who is
this person?
Retired teacher
Taciturn
Humourless
Introverted
Ill at ease in company
Stubborn
Inflated sense of his own importance
Passionate gardener
Mr. G: Presenting us with needs to be met, not a problem
to be managed
Functional analysis yields a formulation
2 competing sets of needs
a need for hygiene - that could only be met with
assistance
a need for privacy and self-respect
Revised Care Plan
Action plan?
Outcome: during 2 week post- intervention period
~ 6 episodes of violence
Jane: A toilet ‘crawling with worms’
Challenge: Toilet refusal with accompanying aggressive resistance
incontinence pads rejected
• neuropsychological assessment = perceptual disturbance (i.e. agnosia)
• toilet floors -
black and white floor tiles
• person variable
Fear of worms
(
Moniz-Cook, Stokes and Agar, 2003)
Revised care plan: function, formulation and intervention
Function: Behaviour is a flight-fight response when confronted with an
anxiety provoking stimulus
Formulation: Agnosia is resulting in misperception of black and white tiles.
Seen as black lines on a white background. Lines misinterpreted by Jane as
worms. The outcome is dread, anxiety and if care action persists, panic and
resistance.
Primary causation: Fear of worms
Secondary causation: Role of dementia - impairment of memory,
communication and reasoning, and agnosia.
Action: Paint toilet floor dark red
Outcome: Appropriate independent toilet use
Research results
7
6
5
4
Average toilet refusal
each day
3
2
1
0
A
B
A
B
Outcomes
Manage
= toileting programme
= continence pads
Resolution = restoring function and dignity