CONTINENCE IN DEMENTIA A family carers perspective

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CONTINENCE IN DEMENTIA A family carers
perspective

• Barbara Pointon MBE
• Ambassador for Alzheimers Society and Admiral
  Nursing
• Member of CQCs Carers Advisory Board
• and Standing Commission on Carers
• barbara_at_pointon.name

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Malcolm in 1992, aged 51, just after he was
diagnosed
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Malcolm, the day before he died, 2007, aged 66
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The rising tide of dementia

• Over 100 types of dementia Alzheimers
  commonest.
• Now a top killer, alongside heart disease and
  cancer
• Affects 700,000 in UK 1 in 14 of over 65s 1 in
  6 of over 80s
• Rising number of people in 40-65 age-range,
  including Downs Syndrome patients who are living
  longer
• Numbers set to double by 2050 more of the very
  old
• A third of people over 65 have dementia in the
  last year of their life
• 66 of people living in carehomes have dementia
• Two thirds of all people with dementia are cared
  for at home
• Developing quality continence care for
  fast-growing numbers
• Why does incontinence occur in dementia?

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COGNITION, ABSTRACT THINKING, KNOWLEDGE, FINER
SKILLS
CONTROL OF BASIC PHYSICAL FUNCTIONS including
continence (usually last)
PSYCHE, 5 SENSES AND EMOTIONS
ESSENCE/ SPIRIT
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Early stage is it really incontinence?

• Incontinence is one of the main reasons why
  family carers put relatives into a carehome
  prematurely?
• Techniques to help people remain continent for
  longer
• PROBLEMS and SOLUTIONS
• Forgotten where the toilet is, even in own home
• If the door is shut, the toilet doesnt exist
  behind it
• Behind one door of many cant read words usual
  pictorial signs of man or woman may be
  meaningless
• Remind, or take to the toilet every 2- 3 hours
  Telecare prompts
• Picture of toilet on the door, near the handle
• Leave door open so toilet can be seen
• Use it or lose it staff must make time for
  continence.
• Everyone has a basic human right to be helped to
  use a toilet

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Early stage is it really incontinence?

• Unable to handle zips, ties, buckles, layers of
  clothing
• Simplify clothing jogging trousers elasticated
  waistbands, hold-up stockings or socks.
• Offer help, then leave. People prefer privacy.
  They wont fall off the seat! Knock to re-enter.
• 84 of people with Alzheimers have visuo-spatial
  problems men stand too far away from bowl
  inaccurate aim
• Floor or loo mat and toilet of sharply contrasted
  colours shiny floor perceived as wet, so fear of
  walking on it.
• Coax forward help to aim plastic pot. Sitting
  down?
• G. Stokes And Still The Music Plays (Hawker publ.
  2008)
• Distaste, even phobia, of using communal
  lavatories
• Disposable, brightly-coloured, paper toilet-seat
  covers

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Early stage is it really incontinence?

• Soiling/streaking in underwear
• Cf. children. What cant be seen cant be
  imagined. Offer help. Check for sore bottom, hard
  paper use baby-wipes?
• Communication breaking down
• Give people time dont rush to fill the silences
• Simplify language use short sentences
• Find out childhood words used for bodily
  functions
• Ask questions requiring yes/no replies
• Answering yes (or no) to everything.
• Carers and Dementia Strategies family carer has
  a right to be involved in assessments and care
  planning.

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The onset of true incontinence

• Night-time bed-wetting (time-delay in
  interpreting signals?)
• Pads (just in case) and mattress protection
• End of going on holidays.
• Continent by day at home, incontinent in daycare
  because of lack of help to toilet
• Daycare withdrawn (health v. social need!)
• Use of daytime pads confined to journeys and
  social events, in case of accidents.

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Dealing with resistance/aggression

• Angry with himself and aggressive towards me
  especially during personal care
• Walk away, try again later
• People with dementia cant concentrate on 2
  things at once use distraction during personal
  care talking/humming/music.
• Refusing to take trousers down use of nightshirt
  instead of pyjamas.
• Some carehomes use modesty sheets to prevent
  embarrassment and/or aggression. Dignity
  respect.
• Try not to be bossy and take over
• Give people TIME to do things in their own way
  doing with, not for them
• Paid careworkers need TIME to gain trust

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Dealing with resistance/aggression

• Think who is it a problem for? If its us, we
  should stop trying to make things normal and
  just Go with the Flow.
• Continuity/familiarity of staff essential
• Agency sent 14 different careworkers in 8 months
  it made Malcolm very aggressive towards us all.
  
• Exhausted, I put him in a carehome. With better
  support, I could have carried on. Feeling guilty.

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December 1999
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April 2000
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Dealing with double incontinence

• In the carehome, Malcolm had become doubly
  incontinent very quickly
• Smallest, cheapest pads prescribed mountains of
  wet bed-linen and clothing broken sleep to
  change the bed
• Requested a continence assessment for the right
  size, fit and absorbency of pads for his height,
  age and weight
• Loss of mobility I refused catheterisation he
  would not understand the apparatus and would pull
  it out.
• Controlling faecal incontinence
• Malcolm defecated in his pad in the nursing home,
  but not after we established a routine of the
  same time every day
• Requires time maybe 30 mins padded commode
  horseshoe seat gravity aided a good bowel
  action.

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Dealing with double incontinence

• Plenty of liquid intake and fresh fruit
  (especially pears)
• Coloured beakers aid hydration in carehomes
• Some antipsychotic drugs cause diarrhoea (e.g.
  haloperidol) and should only be used as a last
  resort and in the short term.
• And Still the Music Plays finding reasons for
  perplexing behaviours on a persons past history
• SEVERE DEMENTIA
• Signals from the bowel are not understood brain
  loses control of muscles to consciously bear
  down. Not the usual constipation - neurological,
  not physical problem
• Community nurses did not understand how the
  overlay of dementia affects normal nursing
  procedures. Daily laxatives resulted in faecal
  leakage ordinary suppositories and enemas did
  not work

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A routine for severe dementia

• Need to allow the bowel to fill up over 3 or 4
  days
• 10ml black treacle daily in morning porridge
• On day 3 add 4 pureed tinned prunes and juice
• After lunch insert 1 or 2 bisacodyl
  suppositories wait 3-4 hrs
• Hoist onto commode circular abdominal massage
  stand behind lean patient forward to push back
  against you.
• PEG feeding not recommended in dementia
• Pureed food and thickened drinks (cold) sticky
  faeces
• Digital stimulus of the anus to start things off
  cf. regimen for paraplegics its not abuse.
• In 9 years of double incontinence and 7 years of
  immobility Malcolm never had a pressure sore

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The dining room, turned into Malcolms room, with
electrically-operated recliner chair, hospital
bed, hoist and manual wheelchair
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Tissue viability

• Not bed-bound. Frequent changes of position
  hospital bed (with adjustable backrest)
  recliner-chair wheelchair
• Regular changes of pads unable to roll on bed
  because of visuo-spatial problems. Use of
  standing hoist.
• Pressure relief brought in to prevent problems
  occurring, not afterwards. Gel mattress, cushion
  and latterly, alternating air mattress.
• Severe weight loss is inevitable in late dementia
  brain losing control of extraction of nutrients
  from food.
• Scrupulous cleansing cotton wipes and gentle
  soap, aqueous cream and water gentle, thorough
  drying.
• Forever Living Products aloe gelly heals 7
  layers down also for haemorrhoids, candida,
  nappy-rash.

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Quality continence care

• Time, ingenuity, respect the person with
  dementia is still a whole person
• Individual, tailored approach
• The right equipment
• Good hygiene
• Avoidance of infection and breakdown of skin
  pressure relief
• Carestaff (in any setting) who are respectful of
  dignity, aware of personal preferences and of the
  persons life history and who understand about
  incontinence in dementia.
• A calm, patient and reassuring attitude towards
  the person with dementia.

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Good continence care contributed enormously to
Malcolms quality of life, and to mine.