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“Getting to Know Me”
Enhancing skills in the care of
people with dementia
Programme
 Session 1:
•
Dementia, an introduction
 Session 2:
•
Principles of person centred dementia care
 Session 3:
•
Communication
 Session 4:
•
The hospital environment and its impact on people with dementia
 Session 5:
•
Opportunities for meaningful occupation and valuing the expertise of friends
and family
 Session 6:
•
Understanding and responding to behaviours that challenge
DVD
• The six sessions are accompanied by
clips from two DVDs showing:
• Ann and Mike who both have a diagnosis
of dementia, and Brian who cared for his
wife who had dementia.
• Gary who has a diagnosis of dementia
and carers Mandy, Carol and Heather.
Dr Michael Woodward also describes
dementia and ‘what is going on’
“Getting to Know Me”
Enhancing Skills in the Care of People with
Dementia
Session 1
Dementia: an introduction
1.1
Aims:
 To reflect on the lived experience of dementia
 To be able to define what dementia is
 To be aware of the main causes of dementia and the
key features of these
 To consider signs and detection/diagnosis of dementia
1.2
Imagine…
• You are sat in unfamiliar clothing, beside a bed in a room with 3 other
beds and lockers, you think it might be a hospital but it is strange and
unfamiliar...
• You cannot recall how you got here ...
• You don’t know what is about to happen, but you have a sense of dread...
• The smells, noises, sights and people – those who appear ill and those in
uniform moving about with purpose – are all puzzling and unsettling...
• You recognise no-one...
• You are hungry and thirsty...
• Occasionally, you summon the courage to call out to people who walk
close by. Many ignore you, those who stop and speak to you talk quickly in
a language you can make no sense of, and then they swiftly depart...
• When you get up your movements are unexpectedly slow and laboured...
• Finally, when you try to seek a way out of this strange and unfamiliar
place, a person in a uniform prevents you leaving…
1.3
• What will you be thinking...?
• What will you be feeling...?
• What will you want to happen/who will
you want to see?
• What might you do...?
1.4
Experience of dementia
Peoples experience of dementia is also
shaped by their personality, culture,
education, faith etc....
1.5
Who is affected?
By 2020 four hundred thousand people in
Australia will have dementia…
1.6
Facts and figures
 Dementia is a National Health Priority
 There are over 298,000 people in Australia with
dementia
 There will be over 900,000 with dementia by 2051
 The proportion of people with dementia doubles for
every 5 year age group
 Three in ten people over 85 have dementia
 Women make up 62% of all people with dementia
 Total direct health and aged care services expenditure
on people with dementia was at least $4.9 billion in
2009-10.
(Source: AIHW Dementia in Australia Cat. No. AGE70. Canberra: AIHW)
1.7
Guidelines for dementia diagnosis
and management
•
Australian Guidelines for GP management of dementia have also been
published: The Royal Australian College of General Practice (RACGP)
Guidelines.1
•
The RACGP guidelines encourage case finding but not screening, early
intervention, ongoing management of dementia symptoms, and
partnership with carers and other service providers.
•
The RACGP guidelines suggest that when dementia is suspected –
whether as a result of a screening test or of family or patient concerns –
the GP obtain a full clinical history, interview the patient and family
together and separately, and ascertain the patient’s ability to undertake
daily activities (e.g. bathing, dressing, managing finances).
•
1 Care of patients with dementia in general practice guidelines can be accessed at:
http//ww.racgp.org.au/Content/NavigationMenu/ClinicalResources/RACGPGuidelines/CareofPatientswithDementia/
20060413dementiaguidelnes.pdf
•
(Phillips, Pond, Goode, “Timely Diagnosis of Dementia: Can we do better?” 2011)
1.8
• Other issues for the GP to consider include safety
associated with driving, medication compliance, legal
capacity and legal matters (e.g. advance care
directives, enduring guardianship and enduring
power of attorney).
• The recommendations reinforce that detection and
diagnosis of early dementia is a lengthy, challenging
process that usually involves third parties in the
diagnostic process.
•
(Phillips, Pond, Goode, “Timely Diagnosis of Dementia: Can we do better?” 2011)
1.9
What is dementia?
“Dementia describes a collection of symptoms that
are caused by disorders affecting
the brain. It is a progressive disease.
It is not one specific disease. Dementia affects
thinking, behaviour and the ability to perform
everyday tasks. Brain function is affected
enough to interfere with the person’s normal
social or working life”
(Alzheimer’s Australia Victoria, 2012)
1.10
Causes of dementia
Alzheimer’s
disease
Other
causes
76%
Vascular
dementia
10%
Lewy body
dementia
5%
Dementia
4%
Fronto-temporal
lobe demenitia
5%
(AIHW 2012)
1.11
Alzheimer’s disease
How it affects the brain:
• Plaques and tangles
Difficulties experienced:
• Gradual onset
• Depletion of important
neuro-transmitter brain
chemicals
• Memory loss
• Atrophy of affected regions
of the brain
• Disorientation
• Gradual, persistent decline
in cognitive functioning
• Word finding difficulties
• Recognition difficulties
• Increasing problems with
everyday tasks
• Changes to mood
• Other…
1.12
Vascular dementia
How it affects the brain:
• Disease to blood vessels
depriving areas of the brain
of oxygen
• May arise from infarcts
affecting larger vessels or
from small vessels disease
• Often co-exists with
Alzheimer’s disease
Difficulties experienced:
• Onset can be abrupt
• Step-like progression
• Losses similar to Alzheimer’s
but some abilities may remain
intact
• There may be more
unpredictability re changeable
mood and behaviour
• People may have greater
levels of self-awareness
• Small vessel disease can
affect walking
1.13
Lewy Body Dementia
How it affects the brain:
• Protein deposits occurring
in nerve cells in areas of
the brain
• Accounts for about 4%* of
all dementias in England
• On the same spectrum to
Parkinson’s disease with
dementia
(Alzheimer’s Society UK, 2007)
Difficulties experienced:
• Fluctuating episodes of lucidity
and confusion
• Auditory and visual
hallucinations
• Parkinsonian symptoms are
likely
• People are more prone to falls
• Disturbed nights with
nightmares and hallucinations
may be present
• Sensitivity to neuroleptic/antipsychotic medications
1.14
Fronto-temporal dementia
Includes:
• Frontotemporal lobar
degeneration (FTLD) or
Behavioural Variant FTLD
or Pick’s disease
• Progressive non-fluent
aphasia (PNFA) or primary
progressive aphasia (PPA)
• Semantic dementia (SD)
How it affects the brain:
• Damage to frontal and
temporal lobes
• Predominantly affects people
under 65
• 30-50% of people may have
a family history
(Adapted from Rohrer et al PDSG, 2009)
1.15
Fronto-temporal dementia
Difficluties experienced may include:
• Apathy
• Changes to personality
• Obsessive compulsive behaviours
• Disinhibition
• Difficulties with language (PNFA)
• Loss of knowledge of word meanings (SD)
(Adapted from Rohrer et al PDSG, 2009)
1.16
Identifying dementia
•
•
Delirium (acute confusion) and depression are also common in older
people.
A diagnosis of dementia should be made only after a comprehensive
assessment, which should include:
– history taking
– cognitive and mental state examination
– physical examination and other appropriate investigations including blood
tests
– a review of medication
•
Other tests may include:
– Structural imaging – CT and MRI
– Neuropsychological testing
•
People assessed for the possibility of dementia should be asked if they
wish to know the diagnosis and with whom they wish the diagnosis to
be shared
(NICE/SCIE Dementia Guidelines)
1.17
Ann, Mike and Brian...refer to DVDs
1.18
References:
• Alzheimer’s Australia Victoria
• Alzhiemer’s Society Dementia UK
• AIHW Dementia in Australia Cat. No. AGE70. Canberra:AIHW
• NICE/SCIE Dementia Guidelines (2006)
• Roherer, J & Warren, J. Frontotemporal dementia (on-line)
http://pdsg.org.uk/clinical_information (Accessed on 22 March 2011)
1.19