SIGNS OF ILL-BEING WHICH YOU CAN OBSERVE
It is also important to look for signs of Ill-Being in people with a dementia. You can observe these
in the same way as you measured well-being – through observation of the person’s behaviour.
Adapted from Bruce 2000, Journal of Dementia Care, Vol. 8 issue 6, Jan/Feb2000.
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Think of a person with a dementia who you know or have known in the past
You may choose someone who is felt by staff to appear to be ‘difficult’
Before you start to fill in the form it is important to read the instructions for each question
very carefully. These will explain what to look for
After reading each question’s instructions and observing the person for some time give the
person a score of 0,1 or 2 for each question
Notes to assist you – see overleaf
0 = No sign
1 = Some signs
2 = Significant signs.
1
2
3
4
5
6
7
8
9
10
Score
Grand Total
ILL-BEING PROFILE
Depressed or despairing
Intensely angry or aggressive
Shows anxiety or fear
Agitated or restless
Withdrawn or listless
Has physical discomfort or pain
Unresolved grieving over losses
Bodily tension
Easily ‘walked over’ by other people
Feels like an outsider
0
1
2
Scoring
 You now add up all the scores
 All ticks in the Zero column score 0
 Each tick in the column marked 1 indicates 1 point
 Each tick in the column marked 2 indicates 2 points
 You will arrive at a total for all the signs by adding up the scores in all the columns together
 Maximum score is 20
 Scores more than 12 indicate some cause for concern about the well-being of the person
and you need to think about ways as to how to improve this
© Dementia Care Matters Ltd 2012
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Guidance Notes to Assist You to Complete the Observation
Similarly ways of observing ill being can be used by noting whether people with a dementia are:
1.
Depressed or despairing
The person is frequently in a state of misery, grief or upset. S/he has a downcast expression, a flat
tone of voice and makes little eye contact. S/he says things that indicate feelings of hopelessness
and helplessness. S/he quickly returns to this state after happier interludes. S/he cries a lot.
2.
Intensely angry or aggressive
The person has outbursts of rage that go beyond expressing appropriate feelings. Examples:
Unprovoked attacks on other people, howls of rage when things go wrong. NB Most “aggression”
towards staff can be seen as signs of well being e.g. the person is attempting to communicate or is
expressing appropriate feelings in response to being treated in a particular way. Unpleasant
though it is for staff, it need not be a sign of ill being in a person with a dementia.
3.
Shows anxiety or fear
The person appears worried, anxious, apprehensive etc. Examples: Continual nervous movements,
stuttering speech, trembling, repetitive actions. The person may say things which indicate anxiety
either directly or using metaphors. e.g. “When is the bus coming for us? The statement is not
meant to be taken literally but is an expression of the way the person is feeling. They may show
signs of panic, nervous trembling, rapid stuttering, crouching in a foetal body position – curled up
and with the face covered.
4.
Agitated or restless
The person shows signs of agitation such as more movement than usual and/or faster movement
than usual. This also applies to speech, which is faster and more frequent than usual. Also look out
for worried frowns. Listen to what the person is actually saying. If a person is agitated, repetitive
movements become faster, speech becomes more indistinct and the person is restless. It is not
always possible to tell exactly what they are experiencing, except that it is not good. NB. A person
with a dementia who does a lot of walking or talking is not necessarily agitated. In their own mind
they may be busily engaged in everyday activity or imitating what staff are doing – even if the
imitation is inaccurate. Walking is not necessarily a sign of agitation.
5.
Withdrawn or listless
The person does very little and is reluctant to join in when activities are provided. S/he does not
seem alert, drifts in and out of sleep and does not respond to stimulation. S/he is not active.
6.
Has physical discomfort/pain
The person shows signs of real or imagined pain e.g. wincing, rubbing or holding the sore place.
They may say that some part of their body hurts. But they may not say anything and you need to
watch out for signs that the person is in pain. Walking or moving about restlessly, shifting their
position in a chair or bed may be evidence of pain. We know there is a lot of undiagnosed pain in
people with a dementia.
7.
Unresolved grieving over losses.
© Dementia Care Matter Ltd 2012
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Grief over all the things that the person has lost is appropriate for someone moving into long-term
care from their own home. They have lost many things – e.g. their independence, status, being
with loved ones, abilities, maybe they have lost a partner through death. The things people say
may give you clues. “Fancy a big chap like me needing help” – “We’re all out to grass here”. This is
not a sign of ill being unless it is very intense and lasts for a very long time. Frequent references to
losses such as the death of a baby many years before or a traumatic experience in the past like
being taken prisoner in the Second World War are signs of unresolved grieving.
8.
Bodily tension
The person shows a lot of bodily tension or adopts rigid positions. S/he is rarely relaxed.
9.
Easily ‘walked over’ by other people
The person is put off or crushed by other people’s remarks or actions. S/he creeps away if
someone makes a critical remark or s/he stops doing an activity if someone else is watching, s/he
does not defend him/herself if someone take something that belongs to them, tells them to move
out of a chair or get out of the room. S/he does not seem to make good use of the abilities she still
has. S/he lacks the resources to deal with the rough and tumble of living as part of a group.
10.
Feels like an outsider
The person is living in a place where s/he is at risk of feeling like an outsider. Examples of this
would be:
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A person whose first language is not English living in a place where everyone else is an English
speaker.
The only man in a place where all the other people – residents and staff are women.
The only member of the group who follows a strict religious code.
A professor in a place where there are no books.
Someone who is seen as more ‘posh’ than everyone else.
Being an outsider does not automatically cause ill being but it does place people at risk. Listen
carefully for remarks that give this away. “They’re all Protestants here and I’m a Catholic”.
”People don’t understand that I don’t eat meat and I never have”. “The others don’t want me”.
© Dementia Care Matter Ltd 2012
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Materials for 2 day Butterfly course\Ill-Being Observation Tool.doc