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Clinical and social information can be useful in providing pastoral care to older people with dementia and their families.


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Title: Clinical and social information can be useful in providing pastoral care to older people with dementia and their families.

Clinical and social information can be useful in
providing pastoral care to older people with
dementia and their families. Rosemary Kelleher,
Social Worker Honorary Fellow, Pastoral Care
Department, St. Vincents Hospital Honorary
Fellow, Academic Unit for Psychiatry of Old Age,
The University of Melbourne Co-ordinator, The
Pastoral Care Project
How clinical and social information can be useful
  • To know the journey of the person with dementia
  • To know the journey of family and friends who
    care for the person with dementia
  • To develop strategies around the communication
  • To take our place with confidence in settings
    which care for people with dementia and their

What is dementia?
  • Symptoms of dementia are not a normal part of
  • Dementia is a syndrome or set of symptoms
    associated with a range of diseases characterised
    by impaired brain function including
  • Language
  • Memory
  • Perception
  • Personality
  • Cognitive (thinking) skills Groups of symptoms
    experienced by people with a range of dementing
  • One person may have more than one condition
  • Condition may be Mild Moderate Severe
  • Source Dementia in Australia. National Data
    Analysis and Development. Jan 2007. Aust Inst.
    Health Welfare Canberra

What is cognition?
  • -initiating activities
  • calculating
  • being organised
  • controlling impulses
  • learning new information and skills
  • making judgments
  • responding to unexpected events
  • having insight into abilities and limitations.

Some statistics
  • For people aged 65 years, likelihood of
    developing dementias doubles every five years
  • 25 of people over 85 have dementia
  • 50 people consulting the Aged Care Assessment
    Team/using Care Packages (CACPs etc) are aged 75
  • 175,000 Australians had dementing illnesses in
  • 37,000 new cases diagnosed every year
  • Source HendersonJorm 1998 Dementia in
    Australia- Aged and Community Care Development
    Report no 35
  • Dementia in Australia. National Data Analysis
    and Development. Jan 2007. Aust Inst. Health
    Welfare Canberra

Some common forms of Dementia1 Dementia of the
Alzheimers Type
  • Characteristics
  • Gradual loss of functioning across at least three
    domains, over a period of at least twelve months,
    with other possible causes excluded
  • Symptoms may include
  • Eg Word finding difficulty
  • Amnesia- Forgetfulness, especially short term
  • Apraxia- loss of ability in every day tasks, use
    everyday tools
  • Repeated questioning- forgetting previous
    enquiry and answer
  • Loosing the car keys/glasses
  • Not keeping appointments
  • Agnosia-Not recognising people and objects

Some common forms of Dementia2 Vascular Dementia
  • Characteristics
  • Step-wise deterioration of specific abilities
  • Changes occur following cerebral events such as
    stroke or an accumulation of transient aschemic
  • Symptoms may include
  • Eg Loss of power of speech
  • Loss of ability to recognise another person ro
    show recognition
  • Loss of ability to move body parts, esp. down one
  • Loss of awareness of specific body parts eg arm,
    leg, field of vision
  • Example-playing drafts and ignoring some draft

Some common forms of Dementia3Dementia of Lewy
Bodies Type
  • Characteristics Gradual loss of capacities
  • Symptoms may include
  • Fluctuating alertness
  • Impaired spatial awareness
  • Hallucinations
  • Example

Some common forms of Dementia4 Fronto-temporal
Lobar Degeneration (FTLD)
  • Characteristics vary according to the cause of
    the degeneration
  • Common symptoms include
  • Impulsivity
  • Emotional outbursts
  • Difficulty initiating/organising activities

Behavioural and Psychological Symptoms of
  • Any of these illnesses may give rise to
    behavioral and psychological symptoms requiring
    specialised management
  • The accepted approach is to carefully study and
    document the difficulties, identify triggers of
    behavior and develop non-pharmaceutical
    strategies to assist wherever possible.
  • Regional Aged Mental Health Services can assist.
    may have a library of diversional resources to
    use in care plan.
  • Dementia Behavior Management Advisory Service
    (DBMAS) provides consultation.

Diagnostic Process for Dementias
  • Examination for other known causes of presenting
    symptoms including infection, delirium,
  • Blood screening eg for thyroid deficiency,
    infection, other illnesses
  • Neuro-imaging- CT scans, MRI or SPECT scans
  • Neuropsychological testing if required
  • Examination by specialist geriatrician eg at
    CDAMS Clinic (Cognitive Dementia and Memory
    Service- one in every public health region in
  • CDAMS Clinic assessment should include home visit
    to see person in own environment in which they
    would be most comfortable and confident, and to
    understand the supports available or needed.

Validity of Dementia Screening Tests
  • Standardised against normal population of the
    same age
  • Given in short sessions to minimise fatigue and
    anxiety which may affect performance
  • Interpreter/ translated testing tools used
  • Scores adjusted in view of educational levels
  • Sometimes test-re-test schedule is used- the
    patient is only compared with his or her own
    previous performance.

Brain diagram
Occupational Therapy Assessments
  • Standardised against normal population of the
    same age
  • Will reflect in real life situations the
    capacities assessed in abstract by
    neuropsychology tests and possibly neuro-imaging,
    depending on condition causing impairment
  • Examples
  • Impulsivity in neuropsychology test and driving
  • Calculations in neuropsychology tests and in
    making purchase in a shop, checking correct
  • Executive function- being organised, making a cup
    of tea.

Mild Cognitive Impairment is Not Dementia
  • Older person or family may report symptoms of
    cognitive impairment but
  • Attain a normal score on Folstein Minimental
    State Examination (MMSE 30/30)
  • May be referred for further tests, esp
  • Do not receive a diagnosis of a dementing illness
    at CDAMS Clinic
  • May be asked to return for re-test in 6 months or
    one year
  • Many of these people do not later develop a
    dementing illness

How Patients and Families may Feel
  • Embarrassed
  • Insulted by patient being asked simple
  • Disloyal- having to confront, insist on
  • Afraid of/upset by family conflict
  • Worn out balancing carer role with other
  • Person with dementia may be suspicious of motives
    of family and friends
  • Family may think unwell person is being
    deliberately difficult/lazy
  • Angry/resentful due to difficulty of tasks/family
  • Guilty about resentment/inability to provide
    support needed/ needing help from others
  • Craving respite/understanding/information
  • Denied supports due to scarce resources, service
    gaps and barriers

Why Pursue Diagnosis at All?
  • Problems may not be caused by dementia at all
  • Problems may be treatable- medication to optimise
    memory, delay symptoms -non-pharmaceutical
  • Persons impairment may affect responsibilities-
    school crossing supervisor, car driver, managing
  • May be vulnerable in dealing with unexpected
  • Decisions could be made while person still has
    capacity- will, appoint power of
    attorney/guardian, make provision for dependent
    adult relative
  • Improve safety/amenity of home to enable person
    with dementia to stay at home as long as
  • Organise support services, social supports for
    person with dementia and family
  • Have important conversations about present and
    future care preferences

Expressive and Receptive Aphasia
  • Expressive Aphasia
  • Loss of ability to speak
  • May still be able to
  • form ideas
  • understand speech of others
  • Communication aids such as word boards, music
  • may assist
  • Receptive Aphasia
  • Loss of ability to understand what others say and
  • Staff may use actions or physical guiding to

Special Circumstances1 Younger Onset
  • May not be recognised as dementia , with very
    serious social and financial consequences
  • Encourage creative thinking to make best of
    available time
  • Person with dementia may have young children/
    teens who need different types of support and
    understanding as they deal with demands of high
    school, loss of parental guidance
  • Genetic questions

Special Circumstances2 Down Syndrome
  • Not all people with Down Syndrome will develop
    outward signs of dementia, but all will have
    brain changes consistent with dementia of
    Alzheimers type by mid 50s
  • May be resident carer for elderly parents
  • Family may have experienced
  • stigma
  • disenfranchisement
  • insensitivity in the past

Special Circumstances3 Culture/Language
  • Different levels of knowledge, understanding,
    stigmatisation of cognitive impairment in
    different cultural groups
  • Need for culturally sensitive styles of care
  • Person with dementia may lose second language
    ability and revert to first language- eg long
    term memory is preserved for longer in dementia
    of the Alzheimers type

Special Circumstances3 Socially Isolated People
  • Family members overseas/interstate
  • Same sex couples excluded by family/
  • Dual disability-vision/hearing impairment
  • History of substance abuse
  • Mental illness

Clinical and Social Information can enhance the
Pastoral Response
  • Being aware of the journey may enhance supportive
  • Clinical and systems knowledge
  • Allow greater depth of understanding
  • Guide us in our communication style
  • Understanding clinical aspects of dementia
    supports PCs in navigating the less predictable
    environment in which adults are behaving in
    unconventional ways due to cognitive impairment
  • Enable education and support of families as
    difficult realities are faced
  • Knowledge gives insight into behavior and care
    practices of care staff
  • Convey respect, understanding to paid care staff
    in care environment
  • Confidence in pastoral care practitioners and
    chaplains inspires confidence in others

Useful Resources
  • Alzheimers Australia
  • Dementia Helpline 1800 100 500
  • CDAMS Clinic- one in each region
  • Receive assessment, develop care plan, connect
    with services
  • Dementia Behavior Management Advisory Service
    (DBMAS) 1800 699 799
  • E. MacKinlay, C. Trevitt Facilitating Spiritual
    Reminiscence for Older People with Dementia
  • A Voice at the Table An integrated model for
    pastoral care in Aged Mental Health available
    late 2011