A MiniSymposium on Dementia for Nursing Staff at St James Hospital

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A Mini-Symposium on Dementia for Nursing
Staff at St James Hospital Suzanne Cahill PhD
Director Dementia Services Information
Development Centre October 16th
DSIDC, St James Hospital, 2007
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Caring for Patients with Dementia how best
can we communicate with the individual and
preserve his or her personhood?
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Once youve got Alzheimers youre
branded. That was terrible. I cant come to
grips with that at all. Its is so frustrating.
Because I have Alzheimers what I say is
irrelevant, nobody will listen ( Les, quoted by
Jane Crips, 1995) About a week after Daddy
moved to live with us, (as the GP said he could
no longer live on his own), I had a birthday and
Rob (my husband) whispered to Daddy as he was
going off to the shops, do you want me to buy a
box of chocolates for you to give Sheelagh for
her birthday. Daddys response was well what
would I be buying that bitch chocolates for -shes
never done anything for me. Well you have no
idea how that upset me, this was my father who
all his life idolised me (daughter caregiver).
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Overview Scale of Dementia Definitions
Communication Personhood Practical tips
(communication strategies) for nurses Summary

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Scale of dementia globally Dementia affects
24 million men and women around the world (Ferri
et al, 2005) Two thirds are people located
in developing countries Dementia prevalence is
7-12 in people over 65 Despite research
advances there is still no cause and no cure for
most types of dementias For someone in their
90s the risk of developing dementia is 50 times
greater than for someone in their 60s (Gilleard,
2000)
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Scale of dementia in Ireland Estimated 38,000
people with AD or dementia (OShea, 2006) Close
to 80 live at home Western North Western part
of Ireland have highest proportion of population
(1.08) with dementia1.08. (OShea OReilly,
1999) Expected increase in numbers of people
with dementia over next 20 years -by 2026,
numbers will increase to 70,000 (Report of
Working Group on Residential Care Services for
the Person with Dementia, 2007) Stigma associated
with diagnosis of dementia (Cahill et al, 2006)
Total cost of dementia care in Ireland (1997)
estimated to be 247 million (OShea OReilly,
1999)
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Dementia is more than a one person disability
Individual Family caregiver Extended
family Health Service Professionals
Friends and Colleagues The community
Society
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Different Models or Perspectives used to
Understand Dementia
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Medical Model
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Social Model

DSDC Stirling University
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For many years the Medical Model was the dominant
orientation in Gerontology it influenced how
older peoples services developed in Ireland and
spawned the future development of dementia care
practice. The medical model squeezed the person
out (Stokes, 2000) Everything about the person
and his or her behaviour was seen through the
dementia Gradually however since the 90s there
has been an emergence of the person (Downs, 1997)
with a move from diseased brains or pathology,
to understanding the person (Reid et al, 2001)
The discovery of the person with dementia and
the focus on personhood was one of the most
significant developments (Woods, 2001)


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Personhood is a term associated with self
esteem, the place of the individual in a social
group, the performance of given roles, .. The
status that is bestowed on one human being by
another. It implies recognition, respect and
trust (Kitwood, 1997 Perry OConnor, 2002)
The preservation of personhood is posited as
the central issue in the care of people with
dementia (Kitwood, 1997) The primary loss of a
sense of self or ones personhood, results from
the way others view and treat dementia sufferers
(Harding Pallfry 1997)


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Definition of Dementia Dementia is the
name given to a set of symptoms caused by an
illness or disease that affects the brain. The
symptoms include problems with memory, reasoning
and judgment. The person therefore has difficulty
with thinking. The problem with thinking can lead
to difficulties with communication difficulty
with managing day to day affairs, difficulty with
self care changes in behaviour and apparent
changes in personality (Powell, 2000) Global
term used to refer to a group of disorders that
have common symptoms but different causes The
deterioration in dementia is of such severity
that it impairs the affected individuals ability
to work and to perform activities of daily
living, including communication (Molloy
Lubinski, 1995)
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Dementia and Communication
How dementia affects communication patterns?
Cognitive problems Language problems
Challenging Behaviours Societal attitudes



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There are times when I feel normal. At
other times I cannot follow what is going on
around me, as the conversation whips too fast
from person to person, and before I have
processed one comment the thread has moved to
another person or another topic, and I am left
isolated from the action- alone in a crowd. If I
press myself with greatest concentration to keep
up I feel as though something short-circuits in
my brain. At this point I become disorientated
have difficulty with balance if I am standing, my
speech becomes slow or I cannot find the right
words to express myself (Small et al, 2000,
American J. of AD Other Dementias)
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Dementia strips people down to the essence of
their being and frees them to be in more direct
touch with their emotions. They communicate with
greater authenticity than our customary
conventional reliance on controlled emotional
expression. ( Gibson, 1998)

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Cognitive Problems Difficulty with new
learning - inability to recall staff
names inability to find ones way around the
wards Difficulty in thinking rationally -
its morning time, I want my dinner now
Lack of insight- Im perfectly well enough to
go home on my own Semantic Memory cant
recall ideas, memories long stored in ones
mind to convert into language
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Language Problems Anomia- the inability to
recall or recognize names of objects - word
substitution often happens or circumlocution Apha
sia - the inability to forms words or express
oneself clearly verbally or in writing Dysarthria
- changes in speech production as a result of
impaired control and flexibility of the speech
apparatus. Does not affect understanding of
language Dysphasia - difficulties in the
production and understanding of language reading
and writing. Perseveration- getting stuck in a
repetitive way, patterns or requests- asking the
same question over and over again
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Challenging behaviours Sexual-
masturbation, patient demonstrating
inappropriate affection, intimacy with
staff member or other fellow patient
Delusions- Capgras delusion, the belief that
relatives have been replaced by imposters
phantom boarder- the
delusion of an intruder in the patients ward,
Verbal people speaking their minds
failing to comply with social mores and
norms, possibly because their feedback system
or ability to monitor their own behaviour has
become impaired why should I have obey
you. You need to loose some weight and besides
you cant even pronounce my name correctly

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Things are not right, I know there's something
wrong but I can't put my finger on it
What are you doing to me? Help!
Why can't you understand me?
Did you steal my money?
I'm scared
Who are you?
There is too much noise
what's that?
I can do it myself, I'm not a child
What? I don't understand
This is humiliating
No I will not sit down, I'm waiting here for my
daughter she's visiting soon
Where am I?
(Lewis, 2007)
Why are you taking my clothes off? Stop it!
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you could at least look at me when I'm talking to
you
Why can't you understand what I'm saying?
I'm only trying to help why are you getting upset?
I showed you yesterday how to do this
Please hurry up I have to do the other patients
too
I don't know why I bother
Please don't hit me
Stop wandering around!
(Lewis, 2007)
I thought you liked me, why don't you recognise
me?
You act like you can't speak but you can tell me
to get lost
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Multiple Pathways to Behaviour in dementia
Care practices Attitudes of carers Relationships
Language
Architecture Interior decoration Layout Access
to outdoors
Environmental
Behaviour (i.e. mood, thought, speech and action)
Social
Physical
Dementia Sensory handicaps Physical
handicaps Ill health pain Medication
Life history Attitudes Beliefs
expectations Habits Needs
(Lewis, 2007)
Biological
Psychological
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Social and environmental factors can greatly
influence a hospitalized patients quality of
life the way in which they experience their
dementia Size design of the setting Time
of day Background noises Lighting Social
psychology - organizational attitude to
dementia Fatigue and stress levels (Goldsmith,
1996)

Implications of a Social Model

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The environment of those with dementia should
be designed with respect to their memory
difficulties, orientation problems, loss of
ability to do complex tasks, increased activity
levels and agitation. (Calkins, 1988 )

Implications of a Social Model

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Strategies to better communicate
with people with dementia Verbal- speak slowly,
use simple sentences, avoid metaphors, use
cueing, avoid double barrelled questions, give
patients plenty of time, put on your detective
hat and try to get inside the mind of someone
with dementia, communicate at eye level, approach
from in front Non-verbal communication She
speaks yet she says nothing, what of that her eye
discourses I will answer it (Shakespeare, Romeo
Juliet)
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Strategies to better communicate
with people with dementia Visual memory
albums, photos, Hello mag Smell /Taste food,
perfumes, lavender oil etc Auditory music,
familiar voices taped Tactile massage,
painting (Drury, 2000)
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Strategies to communicate better with
people with dementia Are the patients with
dementia currently in your care living in a
communication impaired environment (Lubinski,
1995) Too noisy Too dark Too hot Not
sufficiently stimulating Few reasons to talk
Sensory confusing Socially stagnant- no
interpersonal exchange Has restrictive rules
Lack of sensitivity to the value of the
patient Limited accessibility to
activities Patients believe can make little
contribution Staff are overworked, underpaid and
not valued
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Is there anything simple you can do
that might make this environment even marginally
more supportive for patients with dementia ?

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Strategies to communicate better
with people with dementia (Adapted from Lubinski,
1995) Has the patients hearing been tested
in the last 2 years? Are there noise reduced
areas available for privacy? Does the setting
contain a variety of appropriate odours? Does
the setting maximise multi-sensory cueing to
facilitate orientation and thinking? Does the
individuals bedding area reflect a personal
identity? Are staff made aware of patients
former interests vocations lifestyle? Does the
setting reflect seasonal change, holidays and
special events? Do staff understand the nature
of the patients communication abilities and
disabilities Finally what if any realistic
action plan can you put in place in the event of
negative responses to these questions?

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Summary
There are many different models or perspectives
for defining and understanding dementia - todays
focus has been on a social model Alzheimers
Disease is increasingly regarded as a disability
characterised by multiple losses, including
memory, cognitive, functional, social and
communicative losses The old culture of care
within a bio-medical model framework, assumed
that the personhood of the individual was
attacked by dementia and by the discontinuity
between past present and future (Perry
OConnor, 2002) The new culture of care would
argue that the public at large is responsible for
the loss of the individuals personhood due to
the negative way in which society has viewed and
treated dementia sufferers (Harding Pallfry,
1997, Kitwood, 1997) The preservation of
personhood is the primary goal of all care is
considered central in the new culture of care


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Summary
Personhood is integrally influenced by how we
as health care professionals communicate with
people with dementia We can promote personhood
if we are trained to use person-centred
principles, draw on the individuals biography,
engage him or her in meaningful activities and
bring out the best in that person, promoting any
retained ability the person may still have
Conversely we can strip patients of their
personhood by seeing everything about them
through their dementia, by not individualising
their care, by setting them up for tasks they
are incompetent to perform and by not valuing
them for who they are


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Summary Health service professionals can also
play a key role in helping patients with dementia
who have communication problems through careful
use of verbal non- verbal communication,
through life story work and through a better
understanding of the patient and his or her
challenging behaviours. We can also help to
protect their personhood through similar
strategies Whilst a hospital environment is far
from ideal for a patient with dementia, and
whilst the physical lay out of the environment is
important in dementia care equally if not
important is the need to employ staff who enjoy
their work, have opportunities for regular
training, are encouraged to demonstrate
creativity and are rewarded for best practice
Design makes good care easier, it does not make
it happen (Marshall, 2001)


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Contact Details

• Dementia Services Information Development Centre,
  
• Hospital 4, Top Floor,
• St, Jamess Hospital,
• Jamess Street,
• Dublin 8
• Phone [phone]
• Fax [phone]
• Email dsidc_at_stjames.ie
• Web www.dementia.ie