Communicating in Dementia

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Communicating in Dementia

• Dr. Aideen Lewis
• Principal Clinical Psychologist
• Department of Old Age Psychiatry
• St. Vincents University Hospital Dublin

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What is dementia?

• Broad term used to describe a group of symptoms
  including, impairment in memory, intellect,
  judgement, language, insight and sometimes acute
  sensitivity to the built and social environment
• IMPAIRMENT in an interaction between the person
  (their life history, who they always have been)
  and the neurological changes of dementia

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Model of behaviour problems in dementia
Cognition
Interactions
Behaviour
Neurodegener- ative Changes
Environment
(Zarit Zarit 1998)
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Challenges of dementia

• Memory impairment initially short term memory
  (memory for new events)
• Memory ability fluctuates
• Presence of good memory ability for old memories
  but poor retention of new information can
  frustrate and confuse she can remember where
  her room is but she never knows where her handbag
  is, I think she puts it on a bit
• Memories are EMOTIONAL some emotional memories
  will be retained when others are forgotten Im
  always nice to him and he never remembers my name
  but he hates Maggie and never forgets her name!

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Memory/intellectual impairment

• Difficulty learning new tasks
• Failure to remember staff members with a
  resulting failure to build relationships
• Slower processing and difficulty following long
  instructions or doing tasks that require
  sustained attention e.g. reading a book requires
  you to remember characters etc., cooking you need
  to remember what you just did and when you did it
• Fear and intense anxiety due to forgetting where
  s/he is and why

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Challenges of Dementia I -Communucation

• Dysarthria difficulties in the production of
  speech/does not affect understanding of language
  or the ability to decide what you want to say/no
  disruption to reading or writing skills
• Dysphasia difficulties in the production and
  understanding of language, reading and writing
• Depression affect the will to communicate/
  speech is often sparse, quiet, monotone
• Confusion reduced recognition, difficulty with
  memory, inability to think clearly, confusion
  about where they are and who they are with

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Challenges of Dementia II

• Body clock distrubances and disorientation leads
  to lack of awareness of time, confusion
• Difficulties consciously co-ordinating action of
  complex motor tasks (Dyspraxia ) eg. Dressing,
  feeding
• Delusional beliefs sometimes function to help
  the person deal with memory loss eg. Who stole my
  money? It makes more sense to believe someone
  stole from you than to think you cannot remember
  where you put the money

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Challenges of Dementia -III

• Wandering Presents problems in terms of
  ensuring the persons safety. Try to see why
  they are doing it. Person may be hovering in a
  place for a reason, person may be avoiding
  something, person may feel psychologically lost
  and walking is a physically expression of this,
  person may be anxious or stresses
• Depression/apathy may make the person difficult
  to engage. Challenging because it feels hopeless
  and difficult to change

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Challenges of Frontal-Lobe Dementia

• Inappropriate behaviour that is out of character
  e.g. masturbation or verbal abuse can be due to
  inability to monitor and inhibit behaviour
• Perseveration (broken record) repetition of
  patterns or requests person cannot shift from
  one idea or action to another
• Lack of empathy or caring due to difficulty
  taking another persons perspective
• Mood swings due to difficulty monitoring and
  inhibiting emotional response

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Other neurological challenges

• Agnosia inability to identify object by sight
  alone, speech by hearing alone and so on. Visual
  agnosia inabiltiy to name or demonstrate use of
  object without touching it and a lack of
  recognition of the objects meaning or character
• Spatial agnosia inability to find way around
  even familiar places
• Prosopagnosia inability to recognise familiar
  faces (familiar voices often resolves difficulty)
• Anosognosia (one side neglect) person may not
  see their own body as a whole and may deny that
  their left hand belongs to them

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Challenging Behaviour - an attempt to communicate

• Definition of challenging behaviour
• Behaviour of such an intensity, frequency or
  duration that the physical safety of the person
  or others is likely to be placed in serious
  jeopardy
• or
• Behaviour which is likely to seriously limit or
  deny access to and use of ordinary community
  facilities

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Sample Referral

• Patient has become increasingly difficult (
  agitated, aggressive, unmanageable ). Please
  advise.

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Communication

• A function of being human
• Purpose to convey information about needs
• Both verbal non verbal aspects - (Birdwhistell
  1970)
• Non verbal communication (NVC) refers to all
  vocal and non vocal behaviour which conveys
  meaning

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Purpose of NVC

• To totally replace speech/verbal commun.
• Compliments embellishes the spoken word
  encoding of emotions is a main function
• Initiates and sustains verbal communication
• Defines relationships by influencing others -
  affiliation/liking dominance/control
• Self presentation i.e. who I am

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NVC as communication

• Freud (1905) If his lips are silent he chatters
  with his fingertips betrayal oozes out of him at
  every pore
• Abercrombie (1968) We speak with our vocal
  organs but we converse with our whole body

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Goals of communication

• All interactions/communications are attempts to
  attain goals
• The goals are desired behaviour in others,
  attainment of particular relationships or
  interactions
• Goals are underpinned by needs
• When a goal or need is denied, the result is
  continuous corrective action to attain the
  goal/need

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you could at least look at me when I'm talking to
you
Why can't you understand what I'm saying?
I'm only trying to help why are you getting upset?
I showed you yesterday how to do this
Please hurry up I have to do the other patients
too
I don't know why I bother
Please don't hit me
Stop wandering around!
I thought you liked me, why don't you recognise
me?
You act like you can't speak but you can tell me
to get lost
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Things are not right, I know there's something
wrong but I can't put my finger on it
What are you doing to me? Help!
Why can't you understand me?
Did you steal my money?
I'm scared
Who are you?
There is too much noise
what's that?
I can do it myself, I'm not a child
What? I don't understand
This is humiliating
No I will not sit down, I'm waiting here for my
daughter she's visiting soon
Where am I?
Why are you taking my clothes off? Stop it!
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Goal of challenging behaviour

• Challenging behaviour can be viewed as corrective
  action in an attempt to communicate (verbally
  non verbally) about an unmet need or emotional
  state
• Includes physical, psychological/emotional,
  social spiritual needs
• Corrective action is less sophisticated, more
  primitive because of cognitive decline in dementia

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Needs

• Physical care
• Safety
• Belonging
• Intimacy
• Personal space / territory
• Love and attention
• Emotional expression
• Control
• Independence

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Multiple Pathways to Behaviour
Environmental
Care practices Attitudes of carers Relationships
Architecture Interior decoration Layout
Behaviour (i.e. mood, thought, speech and action)
Social
Physical
Dementia Sensory handicaps Physical
handicaps Ill health pain Medication
Life history Attitudes Beliefs
expectations Habits Needs
Biological
Psychological
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Solving the problem

• who is having the problem
• who is managing the problem with least distress
• what legitimate needs are not being met (carer
  /patient)
• listening actively to hear the problem
• observing the problem

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Behavioural Analysis - ABC
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Behaviour

• Principles of behavioural work
• All behaviour unique to individual
• All behaviours have a purpose
• The pathways to behaviour are multifaceted
• Behaviour is complex
• Responses to behaviour need to be individual
• Avoid thinking in group behaviours

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Practical Suggestions

• rule out treatable intercurrent illness
• awareness of the limits of B.Mod with people who
  have dementia
• building a clear comprehensive picture of the
  individual, carer and the environment and the
  problem

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Factors within the Patient/Client

• Type of dementia /course of the illness
• Degree of cognitive impairment /nature of
  impairments
• Intercurrent illness
• Medication
• Pre-morbid personality
• Pre-morbid mental health
• Current mental health (incl. Depression
  anxiety)

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Factors within the Patient/Client contd..

• Life History of individual
• Previous lifestyle
• Habits at home at work
• Beliefs expectations
• Interpersonal attitudes
• Attitudes towards violence
• Sources of stress
• Methods of coping with change stress
• Levels of independency
• Control issues
• Relationship quality

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Factors within the Carer I

• Adjustment to role of carer
• History of caring ( can work for against)
• No.of stressors on carer
• Perception of the stress
• Degree of ambivalence towards caring / patient
• Anger / disappointment at how things have turned
  out
• Own history of adaptation adjustment

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Factors within the Carer II

• Attributions of Behaviour
• Formulation of own stress response as abnormal
• Fear of blame / failure
• Perfectionism standards of care
• Response to protest, refusal, no
• Ability to observe, reflect, establish
  objectivity
• Relationship factors (quality, rules etc.
• Envy /Resentment Dynamic

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Ethical Issues

• Central issue of power physical frailty
  cognitive impairment. Making decisions
  unnecessarily, subtle persuasion and not
  listening to views
• Denying rights in the name of care e.g. use of
  restraint
• Use of behavioral therapy and environmental
  modification without consultation
• Infantilising activities
• Conflict of interest between patient and family
  (precedence of needs, confidentiality of
  information, boundaries)
• Issues of consent

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Personal Issues

• Increased contact with issues of bereavement,
  loss death professionals ability to sustain
  input
• Shock at closeness of death to clinical practice
• Facing own mortality death
• Challenge to religious personal beliefs
• Influence of earlier disaster/trauma on devt. of
  mental illness in late life
• Confrontation with fantasy reality of own
  significant others ageing
• Attributions re. resistance