WHEN WORDS FAIL
Communication in end of life care
for people with dementia
Barbara Pointon MBE
Former carer,
Ambassador for Alzheimer’s Society & Dementia UK
[email protected]
Malcolm in 1992,
aged 51, just
after he was
diagnosed
Malcolm, the day before he died, 2007, aged 66
5 Palliative care scenarios involving dementia
• People who have a life-threatening illness who then develop a
dementia (mild/ moderate)
• People who have dementia (at any stage) who then develop
e.g. cancer
• People who develop dementia as an integral part of another
condition in its later stages (e.g. Parkinson’s, AIDS)
• People dying from the physical breakdown caused by severe
dementia (e.g. Alzheimer’s)
• People who have undiagnosed dementia (c.42%)
• People can die with and from dementia. It’s a terminal illness.
The presence of dementia (at any stage) complicates
the care-giving for other conditions
• Not the normal forgetfulness – no new memories are laid
down
• Accounts for repetitive questions or comments. Reply as
though for the first time
• Repeat important instructions for dosages every time
• Witness the taking of medications
• Misunderstanding normal procedures: e.g. taking bloods is
interpreted as a personal assault. Use 3rd person to distract
• Visuo-spatial problems cause misinterpretation of equipment
Another time, another place
• Older memories are erased in the reverse order laid down
• Time-travelling backwards: real meaning of “I want to go
home”. Responding to “When is mum coming to see me?”
• Giving out-of-date information
• Conversations should concentrate on the right now and the
distant past
• MCA 3rd question – people with dementia can’t imagine the
future.
• Involve the carer/person who knows the patient best - to
create a triangle of care and trust to the benefit of all
Tips for stages of loss of verbal communication
• Depends on type of dementia(s) they have and the pattern of
damage in the brain. Frontal area usually involved
• Fishing for words and names – also is a part of growing older!
• Words that rhyme with the elusive word, or 2 words joined
• Naming objects by function. Jug= milk pourer
• Don’t supply words or finish sentence unless requested
• Don’t correct or argue – very damaging. Ask who it is a
problem for? Go with the Flow, however bizarre it seems
• If they can’t enter our world, we must enter theirs
Vocabulary, patience and pitfalls
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Simplify our own vocabulary (8-yr old). Avoid jargon.
Same eye-level; touch hand or arm, don’t shout. Smile.
Don’t talk to another member of staff over the person’s head.
Assessments
The brain slows down; people with dementia need time to reply to
a question. Embarrassing silence? Just wait.
Closed questions requiring Yes or No. Beware – if questioner is
smiling =yes and if serious=No! Speech then became gobbledegook.
Returning to foreign (birth) language – help from community.
Non-verbal messages in tone, facial expression & body language
Expressive baby-like vocalisations!
The power of music
• Improvised music revealed what Malcolm was feeling
• Music lies in a separate part of the brain; last to crumble
• A means of communication when all other channels are
closed. I used music, rather than medication to change or
moderate his moods
• Carehome ‘speechless’ residents could sing all the words to
familiar songs; rhythm & melody aid memory of words
• We learned to speak through nursery songs – singing them to
people who have had a stroke can regain some speech.
Malcolm 4 years before he
died
The severe stage: impact on palliative care of
becoming mute
• Could not tell us or point to site of pain (visuo-spatial
perceptual problems)
• Face became mask-like – brain no longer controlling fine
muscles in the face
• Usual pain scales not appropriate – couldn’t screw up his face
• Special Dementia Pain scales, e.g. DisDat or Doloplus2
• Continuity of staff who get to know patient and what is
his/her norm.
• Idiosyncratic body signs of trouble – red left ear. Ask carer.
Continue talking
• When mute, people stop visiting and talking to their relative
• We talk to babies, who can’t answer back….?
• The comforting sound of the human voice is possibly the first
thing a baby hears at birth and is deep in our psyche.
• When swallowing is impaired, PEG feeding is not
recommended in dementia because there is an equal risk of
choking on regurgitation
• Feeding slowly by hand is an opportunity to talk – about
anything
December 2005
Communicating detailed but important information in
the severe stage of Alzheimer’s
• Cold drinks more easily managed in the mouth than tepid
ones – brain can sense the difference
• Weight loss is inevitable in dementia – tell the relatives or
they may wrongly accuse staff of neglect
• Refusal to eat, especially in new environment.
• It is the most trustful thing in the world to open your mouth
to a stranger. Relatives useful during transitions
• Meticulous dental hygiene. Swallowable toothpaste
• All dosages of medications should be reduced in line with
severity of the person’s dementia. Not always understood by
GPs and nurse prescribers.
COGNITION, ABSTRACT THINKING,
KNOWLEDGE, FINER SKILLS
CONTROL OF BASIC
PHYSICAL FUNCTIONS
PSYCHE,
5 SENSES AND
EMOTIONS
ESSENCE/
SPIRIT
Communicating through stimulating the 5 senses
Sight – Red/yellow colours, smiley faces, change of viewpoint
Smell – Cooking, favourite perfume/aftershave, aromatherapy
Taste – strong/sweeter flavours, oral feeding
Hearing – recorded music of their taste (use earphones?),
basic need to be talked to
• Touch – the most important of all – stroking hands, gentle
hug to calm night fears
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• Need to feel loved, cherished and safe
Barbara and Malcolm, January 2006
The dying phase
• GSF graph – bumping along at the bottom – going to the edge
and stepping back
• Recognising when the person shows they want to let go
• Removal to hospital will cause shock and hasten death. Keep
in familiar surroundings with familiar people
• Swallowing stopped; people who are dying experience neither
hunger or thirst provided lips are kept moist
• The family physically cradled Malcolm – a very peaceful death
• Communicating to the very end
Communication – when words fail