WHEN WORDS FAIL Communication in end of life care for people with dementia Barbara Pointon MBE

Transcription

1 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 barbara@pointon.name

2 Malcolm in 1992, aged 51, just after he was diagnosed

3 Malcolm, the day before he died, 2007, aged 66

4 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.

5 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 3 rd person to distract Visuo-spatial problems cause misinterpretation of equipment

6 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 Giving out-of-date information Conversations should concentrate on the right now and the distant past MCA 3 rd question people with dementia can t imagine the future.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

7 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

8 Vocabulary, patience and pitfalls 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!

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10 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.

11 Malcolm 4 years before he died

12 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.

13 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

14 December 2005

15 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.

16 COGNITION, ABSTRACT THINKING, KNOWLEDGE, FINER SKILLS CONTROL OF BASIC PHYSICAL FUNCTIONS PSYCHE, 5 SENSES AND EMOTIONS ESSENCE/ SPIRIT

17 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 Need to feel loved, cherished and safe

18 Barbara and Malcolm, January 2006

19 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

20 Communication when words fail