Spiritual Needs of Older People with Dementia and their Families Rosemary Kelleher Social Worker . Honorary Fellow, Academic Unit for Psychiatry of Old Age, The University of Melbourne

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Spiritual Needs of Older People with Dementia and
their FamiliesRosemary KelleherSocial
Worker.Honorary Fellow, Academic Unit for
Psychiatry of Old Age, The University of Melbourne
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Relationship Intimacy with others and/or God
Environment Nature, sea, mountains, gardens
Spirituality Ultimate meaning mediated through
The Arts Music, art, dance
Religion Worship, prayer, meditation
Spirituality and Religion MacKinlay 2006 p 14
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Spiritual Needs of People of Any Age

• To be shown respect as unique individuals
• To receive physical care and assistance with
  respect
• To feel safe, emotionally secure, understood
• To have relevance
• To have appropriate avenues for expression of
  physical, emotional spiritual and sexual feelings
• For carers to understand the spiritual, emotional
  and clinical issues arising from special needs

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How would spiritual needs of people with dementia
be different from others?

• Shock of dementia diagnosis
• Awareness of changed functioning
• Embarrassment
• Fear
• Loss of autonomy, privacy, independence
• Disbelief
• Problems understanding
• Worries about ongoing care for dependent family
  members
• Problems knowing whom to trust
• Things seeming to fall apart when they should be
  all coming together

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How patients and families may feel

• Embarrassed by stigma and symptoms of dementia
  diagnosis
• Insulted by patient being asked simple questions
• Disloyal- having to confront/insist on
  assessment/placement
• Afraid of/upset by family conflict
• Worn out balancing carer role with other
  responsibilities
• Distressed by loss of role and status of carer
  when person with dementia moves to residential
  care
• Person with dementia may be suspicious of motives
  of family/friends
• Angry, resentful due to difficulty of tasks,
  family relationships
• Guilty about resentment/inability to provide all
  support needed
• Isolated-unable to connect with supports
  available
• Craving respite /understanding/information
• Denied supports due to scarce resources, service
  gaps and barriers
• Carers may feel role loss when family members
  enter residential care
• Ashamed to use residential care due to cultural
  or family expectations

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Engaging with others

• Show that they would like to connect
• Responsiveness
• Give feedback to help us to continue or change
• Find something in common
• Being On the same page
• Speak the same language
• Shared world view
• Common interests
• Give and receive warmth and care

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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 skills-initiating activity,
  calculating, being organised, being aware,
  controlling impulses, learning new information
  and skills, making judgments,
• Responding to unexpected events, having insight
  into limitations.
• Dementia may be described as mild, moderate or
  severe
• A selection of these symptoms may occur in people
  who have a range of illnesses, each with
  different pathways, possible treatments, and
  emotional impacts.
• More than one condition can occur, e.g. dementia
  of Alzheimers type and Vascular dementia.
• Source Dementia in Australia National Data
  Analysis and Development, January 2007.
  Australian Institute of Health and Welfare
  Canberra

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Structured Approaches to providing spiritual
care(Individual of Group)

• Reminiscence
• Relationships
• Hopes fears and worries
• Growing Older
• Spiritual and Religious Beliefs
• Spiritual and Religious Practices
• Grief
• Humour

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Clinical and Social Information can be useful in
making an empathetic connection

• 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 communication strategies around and
  across the communication barriers
• To take our place with confidence in settings
  which care for people with dementia and their
  families

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Understanding the Brain

• Slide of Brain here

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Different style of communication needed to relate
to people who have lost some capacities and may
be distressed by this

• e.g.
• Short attention span
• Changed tolerance of physical closeness
• Lowered social inhibition e.g. standing too
  close, touching the other person, making remarks
  or suggestions
• Speech problems
• Hearing or sight problems
• Neglect as a result of stroke
• Restlessness, constant walking
• Delirium may cause agitation OR passivity

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Dementia of the Alzheimers Type (DAT)

• Pastoral Care Practitioner is
• Speaking slowly in short sentences
• Asking fewer questions
• Using the persons name frequently
• Expressing warmth through gesture, posture,
  facial expression, name tag
• Supporting the persons efforts in conversation
• Leading the conversation more than usual
• Acknowledging feelings, re-assuring, not
  requiring social competence, recall
• Support and empathy to family/staff.

• Gradual loss of functioning across at least three
  domains, over a period of 12 months, with other
  possible causes eliminated.
• e.g. word finding difficulty
• Forgetfulness, especially short term or recent
  memory
• Apraxia-loss of ability in everyday tasks
• Repeated questioning
• Loosing the car/keys/glasses
• Not keeping appointments
• Repetitive calling out

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Vascular Dementia

• Pastoral Care Practitioner is
• Mindful of the persons capacity to speak or
  understand speech
• Using gesture/writing down/touch to support
  engagement
• Empathetic to the persons experience of lost
  capacities e.g. mobility, sight, hearing (Share
  immobility by sitting with the person. D.
  Jamieson)
• Approaching from the aware side of the person
• Not seeking specific explanation for spontaneous
  tears
• Using objects with meaning for the
  person-something to hold onto.

• Step-wise deterioration of specific abilities
• Occurs following cerebral events such as stroke,
  or cumulative effect of many strokes
• E.g. loss of power of speech, ability to
  recognise another person, loss of ability to move
  parts of body
• Loss of awareness of specific body parts, e.g.
  arm, leg, field of vision (Neglect)
• Spontaneous Tears
• Example playing drafts

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Fronto-temporal lobar degeneration (FTLD)

• Pastoral Care Practitioner
• Notes or checks with staff about the persons
  degree of agitation before offering presence
• Expects briefer interactions with less
  intellectual contact- e.g. browse through the
  paper but not expect usual level of comprehension
• Stroll through the garden/sit beside resident on
  a seat and observe the scene together
• Resident may be unable to engage in group
  activity such as music listening/singing

• \
• Impulsivity
• Emotional outbursts
• Difficulty initiating/ organising activities
• Short attention to tasks
• Past traumatic experiences harder to repress
  (e.g. War experiences)

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Expressive and Receptive Aphasia

• Expressive Aphasia-loss of ability to speak.
• Person may still be able to
• Think logically
• understand speech of others
• Communication aids such as word boards, music
  may assist with expression of ideas and feelings

• Receptive Aphasia
• Loss of ability to understand what others say
  or do
• Others may use actions or physical guiding to
  communicate

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How can pastoral care practitioners help

• Understand the journey
• Provide supportive presence as person with
  dementia faces very unwelcome /frightening
  realities
• Educate / support family carers as realities and
  decisions are faced
• Encourage use of available supports
• Convey respect and support to paid carers in care
  environment
• Model warm and engaging behaviour so support
  other staff/family members to relate this way too.

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Special circumstances1 Younger onset

• May not be recognised as dementia, with very
  serious financial and social consequences
• Encourage creative thinking to make the best of
  time
• Person with dementia may have young children 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 Circumstances 2 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

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Special Circumstance 3 Cultural/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 loose second language
  ability and revert to first language long term
  memory is preserved for longer in Dementia of
  Alzheimers type

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Special Circumstance 4 Socially isolated people

• Family members overseas
• Same sex couples excluded by family/church/communi
  ty
• Dual disability Vision/hearing impaired
• History of substance abuse
• Poverty
• Mental illness

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Clinical and social information can enhance the
pastoral response

• Being aware of the journey
• Clinical and systems knowledge
• gives greater depth of understanding
• guides 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
• Gives insight into behavior of care staff
• Confidence of pastoral care practitioners and
  chaplains inspires confidence in others

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Communication StylesMacKinlay citing Kitwood
1997 Dementia Re-considered Open University Press

• De-personalising
• Treachery
• Disempowerment
• Infantilisation
• Intimidation
• Labeling
• Stigmatisation
• Outpacing
• Invalidation
• Banishment
• Imposition
• Withholding
• Accusation
• Disruption
• Mockery
• Disparagement

• Person Centred
• Recognition
• Negotiation
• Collaboration
• Play
• Celebration
• Relaxation
• Validation
• Holding
• Facilitation
• Creation
• Giving

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Useful resources

• Jamieson D Walking with forgotten people Some
  aspects of pastoral care with older people.
  Centre for ageing and pastoral studies CAPS ACT
  2004
• Elizabeth MacKinlay Trevitt, C Facilitating
  spiritual reminiscence for older people with
  dementia. A learning package. CAPS ACT 2006
• A Voice at the Table An integrated model for
  pastoral care in aged mental health - available
  from HCCVI
• Alzheimer's Australia Website www.alzheimers.org.a
  u
• Dementia Helpline 1800 100 500
• Aged Care Assessment Service (ACAS)- one in every
  region, access to care packages, respite,
  residential care, carer respite centres
• Dementia Behaviour Management Advisory Service
  (DBMAS)
• 1800 699 799 (Victoria wide)