'Toileting difficulties or incontinence? Changing the landscape of dementia care'.

1. 'Toileting difficulties or incontinence? Changing the landscape of dementia care'. Professor Graham Stokes, Director of Dementia Care. Bupa Care Services, UK

2. 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?

3. 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.

4. 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.

5. 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).

6. 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

7. A technique known as pinpointing

8. 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)

9. 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%

10. 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%

11. The Essential Pathway to Successful Toileting (contd.) • Possessing the dexterity and co-ordination to adjust clothing • Initiating the act of voiding.

12. Methodology of understanding • Behaviour analysis (ABC) – the setting event – the what, the where, the who. • Functional analysis – understanding why? • Appreciative Inquiry

13. 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

14. 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.

15. 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.

16. 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)

17. 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

18. 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

19. Revised Care Plan • Action plan? • Outcome: during 2 week post- intervention period • ~ 6 episodes of violence

20. 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 • ( • Moniz-Cook, Stokes and Agar, 2003) Fear of worms

21. 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

22. Research results

23. Outcomes • Manage = continence pads • Resolution = restoring function and dignity = toileting programme