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  • Communication at the End Stages of Dementia

    Genevieve Thompson, RN PhD

    Associate Professor, College of Nursing

  • Acknowledgments

    • Thank you to the following who graciously helped me learn about good communication over the years I have taught and have contributed to the content of some of these slides:

    • Dr. Susan McClement

    • Dr. Mike Harlos

    • Jamie Penner

  • Needs of Family Caregivers (Thompson & Roger, 2014)

    • Physical, Emotional, and Psychological Needs; • Guilt and Ambivalence

    • Isolation

    • Grief and Loss

    • Instrumental Support; • Employment and Respite

    • Information and Decisional Support Needs

  • Information & Decisional Support Needs

    • Report a lack the knowledge to make informed decisions

    • Poor understanding of dementia as a life-limiting illness

    • Fearful of asking questions – afraid of looking ignorant, not knowing the questions to ask, worry about bothering busy health care providers

  • Impact of Lack of Information on Decision- Making

    • Hospital Transfers

    • Aggressive medical interventions for predictable/expected clinical events (e.g., changes in swallowing ability, mobility, increased infections, incontinence)

    • Poor bereavement outcomes for family caregivers

  • Communication on Dying

    • Numerous studies to date have continued to point out that health care providers, and particularly nurses, feel often themselves unprepared and uncomfortable discussing issues around death and dying.

  • Identifying Our Personal Fears • Won’t know the “right” thing to say

    • Say the wrong thing

    • Little personal experience

    • Facing own mortality

    • Unresolved grief

    • Overwhelming emotions/might cry

    • Dishonor patient or family due to not understanding culture

    • Uncomfortable with just “being” rather than “doing”

    • Simply do not know what to do

  • What happens if we don’t address our fears?

    • When we don’t address our fears, we continue that cycle of avoidance, that leads to family caregivers feeling unprepared, and ultimately care suffers.

    • We need to become comfortable with the uncomfortable.

  • Addressing Our Personal Fears

    • Reflect on & acknowledge fears

    • Talk about it

    • Challenge your comfort zone

    • Start with basics

    • Observe others – good & bad

    • Practice!

  • Communication Strategies

    • Connecting

    • Verbal & non-verbal language

    • Presence

    • Empathy

  • Connecting

    • You are a person & the FC and PLWD is a person

    • Humanity is your “admission ticket” to the conversation

    • Your profession provides added layer of technical information and skill BUT…

    • Must connect as a person to provide effective support

  • Verbal & Non- Verbal Language

  • Therapeutic Communication Nonverbal

    What you do speaks so loudly

    that I cannot hear what you say.

    Ralph Waldo Emerson

  • Presence

    • Attentiveness

    • Accountability

    • Sensitivity

    • Openness

    • Active Listening

  • Empathy

    The act of communicating to our fellow human beings that we understand something about their world.

  • Practicing Empathy

    Active Listening

    • Focus fully

    • Avoid interrupting

    • Avoid judgment

    • Show interest

    Unconditional Acceptance


    How do we understand?

  • Practicing Empathy

    Non-Verbal Empathy

    • Warmth

    • Genuineness

    Verbal Empathy

    • Accuracy

    • Specificity

    How do we communicate


  • Key Features of Communication in Palliative Approaches

    • Appropriate setting

    • Permission

    • Be clear about topic and messages

    • Acknowledge / Validate / Normalize

    • Explore current understanding of illness

    • Anticipate concerns – Preemptive

    • Skillful titration of information

    • Listen and watch for cues

    • “Check points” – do they understand?

    • The Aftermath – follow-up, letting others know, where to go from here

  • “Set the Stage”

    • In person

    • Sitting down

    • Minimize distractions

    • Person living with dementia present if possible

  • Remember…

  • • Find out how people like to get information

    • By doing so you are getting permission to have the conversation

  • Seek Permission

    • “Many people in this situation wonder about / are

    concerned about …[fill in blank].

    Would you like to talk about that?”

    • “Are you comfortable discussing these issues?”

    • Don’t assume that the absence of question reflects an

    absence of concerns

  • 5 important questions for starting the conversation…

    1. What is your understanding of where you are and of your illness?

    2. What are your fears or worries for the future?

    3. What are your goals and priorities?

    4. What outcomes are unacceptable to you? What are you willing to sacrifice and not?

    5. What would a good day look like for you?

  • Ways to start the Conversation…

  • Methods • Phase 1 – Qualitative Interviews

    • Bereaved family caregivers (n=17)

    • Palliative care experts (n = 7)

    • NH care providers (n = 26)

    Data analysis:

    • Using content analysis and constant comparative techniques researchers on the team (Thompson, McClement, Rogers, Hack) independently coded, or gave meaning to all units of information within each participant response.

    • Codes were then transformed into questions.

    • Phase 2 – Development and Refinement

    • Clarity, Sensitivity, Importance, and Relevance of items assessed • Family Caregivers (n = 11); Health care providers (n=11); International experts

    (n = 5)

  • • Deliver the information/explain the options • Preparation comes in handy

    • Discuss options – including pros and cons

    • How we will help them decide what path is best for them, in whatever time they have remaining

    • Be clear!

    • Recognize when silence is golden • Gives time to process and collect thoughts

    • Allows you to center and be responsive

    • Creates space and invites deeper communication

  • • Ask the FC or PLWD to explain back what they understood

    • Clarify any misunderstandings

    • Write down what was said • Summarize what was discussed and how they can reach


    • Reminder that you are there for them

    • Puts them in the role of being an active participant

  • Titrate information with

    “measured honesty”

    Check Response: Observed & Expressed

    The response of the FC or PLWD determines the nature & pace of the information shared.

  • What if… patients/families ask difficult questions? Acknowledge/Validate and Normalize

    “That’s a very good question, and one that we should talk about. Many people in these circumstances wonder about that…”

    Is there a reason this has come up?

    “I’m wondering if something has come up that prompted you to ask this?”

    Gently explore their thoughts/understanding

    “Sometimes when people ask questions such as this, they have an idea in their mind about what the answer might be. Is that the case for you?”

    “It would help me to have a feel for what your understanding is of your condition, and what you might expect.”

    Respond, if possible and appropriate

    • If you feel unable to provide a satisfactory reply, then be honest about that and indicate how you will help them explore that

  • • “He was fine a week ago...he’s changed so fast!”

    • “She was fine until I brought her in...”

    ❖ did things really change suddenly?

    ❖ changes had begun, necessitating admission (If

    things were going so well, why come in?)

    ❖ diminishing reserves → accelerated decline


  • Day 1 FinalDay 3Day 2

    The Perception of the “Sudden Change”

    Melting ice = diminishing reserves

    When reserves are depleted, the change seems sudden and unforeseen.

    However, the changes had been happening. That was fast!

  • Communicating with distressed patients/families…

    1. Acknowledge emotion

    2. Invitation

    3. Explore expectations & determine boundaries

    4. Convey genuine concern

    5. Present the plan for moving forward

    6. Thank the person for being open

    “You look really upset.”

    “Tell me about it/what happened.”