Dr John Ward - Hunter New England Health - What Happens to the Self in Dementia: Implications for...
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Transcript of Dr John Ward - Hunter New England Health - What Happens to the Self in Dementia: Implications for...
What I want to cover
• What is the nature of the loss of ‘self’ in dementia and is this important
• What is the ‘self’ and how can we understand its loss in dementia
• Is there a way of perceiving the ‘self’ that allows us to better understand dementia
• What are the implications for the healthcare system
Fear of dementia centres on loss of self
• Disproportionate fear of dementia
• “I don’t want to become a vegetable”
• “I don’t want to be a burden on my family”
• Talk of suicide/euthanasia
Carers perceive the loss
• “He’s no longer the man I married”
• “I’ve lost my husband”
• “I get no thanks for anything I do”
• Anticipatory grief
PWD perceive the loss
• “People ignore me as though I am not there”
• “I didn’t like Dr X – he just spoke to my wife”
• “My friends/family no longer come to visit”
A son’s description of his father’s decline due to AD
• “a prism that refracts death into a spectrum of
its otherwise tightly conjoined parts – death of
autonomy, death of memory, death of
consciousness, death of personality, death of
body…..its particular sadness and horror stem
from the sufferer’s loss of his or her “self” long
before the body dies”.
Jonathon Franzen, The New Yorker, Sept 10, 2001, p89.
Where is the loss of ‘self’ in dementia?
• Mild
o memory impairment
o impairment of praxis, speech, judgement, calculation
• Moderate
o delusions, hallucinations
o getting lost in familiar areas
o difficulties with personal care
o incontinence
o impairment of speech and movement
• Severe
o bedfast; totally dependent
o difficulties with swallowing, eating
Historical views of self
• Pre 17C - traditional/religious view – non-material soul
• 17 C - Descartes – doubting, thinking
• 18 C – Locke, Hume
• From 1600 to mid 20C, Cartesian dualism was predominant view (non-materialism/non-reductionism)
• Modern view epitomised by philosopher Derek Parfit
(Reasons and Persons,1984)
– bundle theorist (reductionist)• the self is a bundle of brain circuits
• identity maintained by psychological continuity – overlapping chains of connectedness
Neuroscience view of self - Ramachandran
• Defining characteristics of self
– Continuity – thread linking past, present and future
– Unity of coherence – we experience as one person despite diversity of environments, activities
– Embodiment or ownership – we feel anchored to our bodies
– Agency/free will – feeling in charge of actions
– Self-reflection and self-awareness
• All can be damaged or destroyed by brain diseases
Douglas Hofstatder – I am a Strange Loop
• ‘Self’ is an epiphenomenon
• A neural and social construct
• A network of loops linking:
– various networks in the brain
– the brain and the body
– the brain/body and the environment
– the brain/body and significant others
– the brain/body and the social environment• culture, religion, media, life-histories
What is the self?
• Not a little man in a Cartesian theatre (ego, soul)
• Not a discrete part of the brain
• An epiphenomenon
• A neural and social construct
• A series of loops (Hofstadter).– linking parts of the brain
– linking brain and body
– linking brain/body with other people and the environment
– linking brain/body with culture, spiritual beliefs, community
The self (or loops) in dementia
• Gradually diminishes in the person with
dementia
• Can remain intact or diminish much less in
spouses, family, close friends
Issues regarding self/loop in dementia
• How do we relate to person with dementia to avoid
unnecessarily further eroding ‘self’
• How do we support the family to provide care for a
person who may increasingly seem a stranger
• How do we structure care systems to minimise
erosion of ‘self’
Personhood - Kitwood
• A standing or status that is bestowed upon one
human being, by others, in the context of
relationship and society
• It is lack of appropriate care not the disease that
takes personhood from people with dementia
• We do this by ‘malignant positioning’ of the PWD
• We avoid this by person-centred care
Minimising the undermining of self
• Assessment
– avoid embarrassing PWD or family
• Management plans
– emphasise autonomy, capacities
• Case management/family support
– available at all times
• Capacity assessment
– never question family in presence of PWD
• Minimise repeated demeaning cognitive testing
Preserving self in clinic assessment
• Teams of two – doctor and key worker (ideally RN)
• Doctor interviews PWD and family but asks no questions that would embarrass either party
• When ready to examine PWD, ask family to step out
• Family interviewed by nurse– family can talk freely
– nurse asks about delusions, hallucinations, behaviour,
personality change, capacity, carer attitude and stress
• Nurse visits PWD and family a couple of weeks later
• Nurse case manages PWD and family
Newcastle model for assessment and management of dementia
• Six Community Dementia Services in GNC (3 LGAs)
– each serve populations of 50,000 – 80,000
– each has at least one Community Dementia Nurse• attached to ACAT
– each has a part-time geriatrician
– weekly clinics in each area – two in West Lake Macquarie• Geriatrician and CDN work together
– home visits and visits to ACFs
– CDNs case manage• difficult behaviours, carer stress, younger onset dementia
Summary
The erosion of ‘self’ is both a feared and experienced
aspect of dementia – often the most dreaded
The dementia journey can be best understood if we see
the ‘self’ of the PWD as linked selves/loops
How we manage dementia can impact significantly on
the erosion of ‘self’ in PWD and family
. we need CDNs (or other key workers) and geriatricians
working together in all areas of Australia