Thoughtful Dementia CareTM YouTube Presentation

picView the entire YouTube presentation here.

On May 9, 2013, Jennifer Ghent-Fuller gave a presentation in Thunder Bay Ontario at a conference held by the Ontario Network for the Prevention of Elder Abuse. During this presentation, Jennifer described the concepts provided in her book, “Thoughtful Dementia Care : Understanding the Dementia Experience”. This talk is suitable for watching by family members or others, who are learning about or reviewing, the care needed by a person with dementia.

The table of contents of both parts one and two of the talk are provided below, in order to facilitate the playing of shorter parts of the talk to generate discussion and debate in a group, or to permit specific parts of the talk to be easily located for review.

Time Content:
0:00 Introduction
Highlight: the meaning of the term ‘thoughtful dementia careTM’ 
5:00 Short-Term Memory Loss

  • Covers the last week and the next few days
  • Unable to track conversation over hours or days
  • Changes family life
  • Thoughts are about the remote past

Highlights: the types of memory processes; conversation moves away from day-to-day problem-solving; grieving starts early

9:20 Short-Term Memory Loss cont’d

  • Unable to perform complicated tasks / multitask
  • Easily distracted – keep only one thing in mind
  • Live ‘in the moment’
  • Learning affected – unable to adapt to change

Highlight: discussion of anger and impatience 

17:15 Long-Term Memory Loss

  • Progressive retrograde amnesia
  • Results in the person with dementia using the context of their own past, searching for past surroundings and loved ones

Highlights: understanding the context perceived by the person with dementia; emotional palliation is a guiding principle of care

26:45 Immediate Memory

  • Lasts the length of a short conversation
  • Remains intact longer
  • Along with socially-appropriate responses, and the masking of memory lapses, this gives the impression that the person is really ‘normal’

Highlight: lack of acceptance by others that a person has dementia

31:00 Other Changes…

  • May form new memories if the event is emotional
  • May (slowly) form new memories of procedures
  • May have obsessions
  • May not understand or remember that they have dementia (insight)
  • Unable to tell time, remember what day, month or year it is

Highlight: loss of insight into their disease does not mean that the person with dementia is “in denial”

42:20 Other Changes cont’d

  • May be unable to initiate activity
  • Slow in thinking, acting, talking
  • Lose expressive and receptive language
  • Experience progressive geographic disorientation

Highlights: lack of activity is not laziness; may be unable to entertain or occupy themselves; unable to hurry; their own language may sound foreign to the person with dementia; communicating with body language; tendency to become lost

51:30 Other Changes cont’d

  • Executive functioning relies on short-term memory to sequence and long-term memory to maintain skills
  • Lose the skills needed to organize their lives, such as using the telephone, shopping, food preparation, housekeeping, laundry, driving or arranging transportation, managing medications, hobbies, community responsibilities and financial management
  • Unable to continue working or continue roles within the family
  • Gradually (over many years) lose the abilities needed to care for themselves because of loss of memory and neuromuscular control – eventually totally dependent

Highlights: balance between independence and safety; the struggle to get themselves through the day can make a person with dementia appear self-centred; carer often gets no thanks for all their work

0:00 Change in the use of Sensory Information

  • Progressive decrease in sensory ability, e.g. decreased depth perception, acuity, peripheral vision, sense of smell
  • Connection of sensory information with the matching meanings
  • Interpretation of sensory meanings by the brain
  • Slowness in processing information

Highlight: don’t dismiss difficulties with “well, they have dementia,” look for thoughtful ways to help people with dementia to get through their day and to experience less anxiety and stress

10:34 Alterations in Judgement

  • Difficult to make judgements and decisions
  • In order to make accurate judgements, we require accuracy in our memory, perceptions, interpretation and understanding of the situation and we have to hold all the pertinent factors in our short-term memory simultaneously

Highlights: dealing with the need to go home; inappropriate sexual behaviour

20:50 Emotional Changes

  • Continue to experience all emotions
  • May no longer inhibit their expression
  • May experience mood swings
  • Fear and anxiety are paramount

Highlights: helping a person with dementia stay calm; preventing/reacting to unpreventable catastrophic reactions; avoiding arguments

26:55 Delusions, Illusions & Hallucinations

  • Delusions
  • Illusions
  • Hallucinations (in any of the senses)

Highlights: delusions – e.g. “People are always stealing from me;” illusions – mistaking objects/people in the environment; hallucinations – compared to dreaming while awake; to help people stay calm, carers need to overcome our need “to be right”

36:06 Delusions, Illusions & Hallucinations Cont’d

  • Eventually do not know where they are in time or place, and cannot recognize anyone
  • Also may be dealing with sensory misperceptions, hallucinations, inability to interpret bodily sensations etc.
  • Altered context / reality  →  fear / anxiety / possible panic

Highlight: further discussion about avoiding catastrophic reactions

42:15 Living with Dementia

  • Acceptance of constantly changing alternate reality for the person with dementia
  • Negotiating role changes

Person with Dementia (early):

  • Learning to cope with changes in oneself
  • Managing forgetfulness

Highlight: understanding the constellation of inabilities

48:09 Interaction

  • Keep the situation calm
  • Unconditional positive regard (no correction or scolding)
  • Create a supportive way of life (the requirements will change as the disease progresses)

Highlight: helping the person with dementia avoid distress

49:45 Promote an atmosphere of emotional palliation:
Calm     Accepting    Empathetic     Warm     Non-confrontational     Humorous     Laughing     Promoting a sense of security and well-being     Affectionate     Fun      Compassionate     Relaxed     SMILE!