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

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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
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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
  barriers
• To take our place with confidence in settings
  which care for people with dementia and their
  families

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What is dementia?

• Symptoms of dementia are not a normal part of
  ageing.
• 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
  illnesses.
• 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

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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.

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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
  2003
• 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

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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
  memory
• 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

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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
  attacks
• 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
  side
• Loss of awareness of specific body parts eg arm,
  leg, field of vision
• Example-playing drafts and ignoring some draft
  pieces.

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Some common forms of Dementia3Dementia of Lewy
Bodies Type

• Characteristics Gradual loss of capacities
• Symptoms may include
• Fluctuating alertness
• Impaired spatial awareness
• Hallucinations
• Example

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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

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Behavioural and Psychological Symptoms of
DementiaBPSD

• 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.

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Diagnostic Process for Dementias

• Examination for other known causes of presenting
  symptoms including infection, delirium,
  depression,
• 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
  Victoria)
• 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.

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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
  attained
• Sometimes test-re-test schedule is used- the
  patient is only compared with his or her own
  previous performance.

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Brain diagram
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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
  test.
• Calculations in neuropsychology tests and in
  making purchase in a shop, checking correct
  change
• Executive function- being organised, making a cup
  of tea.

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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
  neuropsychology
• 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

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How Patients and Families may Feel

• Embarrassed
• Insulted by patient being asked simple
  questions
• Disloyal- having to confront, insist on
  assessment
• Afraid of/upset by family conflict
• Worn out balancing carer role with other
  responsibilities
• 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
  relationships
• 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

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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
  strategies
• Persons impairment may affect responsibilities-
  school crossing supervisor, car driver, managing
  finances
• May be vulnerable in dealing with unexpected
  situations
• 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
  able/happy
• Organise support services, social supports for
  person with dementia and family
• Have important conversations about present and
  future care preferences

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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
  do
• Staff may use actions or physical guiding to
  communicate

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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

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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

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Special Circumstances3 Culture/Language
Diversity

• 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

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Special Circumstances3 Socially Isolated People

• Family members overseas/interstate
• Same sex couples excluded by family/
  church/community
• Dual disability-vision/hearing impairment
• History of substance abuse
• Mental illness

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Clinical and Social Information can enhance the
Pastoral Response

• Being aware of the journey may enhance supportive
  presence
• 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

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Useful Resources

• Alzheimers Australia www.alzheimers.org.au
• 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