1. Dena Shenk, PhD University of North Carolina Charlotte dshenk@uncc.edu
Caring for and Communicating with People with Dementia: We’re All in this Together
Dena Shenk, PhD
University of North Carolina Charlotte
Sandwich Generation 2017 Conference, University of Central Oklahoma, Wednesday, October 25, 2017.

2. The ways in which we understand dementia and frame people with dementia
determine the ways in which we approach and communicate with them to a very great extent.

3. Focus on how people with dementia can be aided to maintain their self-identity as we live with and care for them as formal and informal caregivers.

4. Ms. Portia Rezk
Wife
Mother
Grandmother
Caregiver

5. Emphasis:
on empathy and engagement as the key to “good care”

6. Not only holistic physical care,
but also empathy and engagement:
“You never know what you are going to say or do that is going to make that connection (with a resident.)”

7. “Touch and wording are everything, everything.”
“How you say what you’re needing for them to allow you to do.”

8. Empathy and engagement are crucial aspects of good caregiving
“I make a big effort of trying to reach them in some kind of way whether it be a smile, a touch, making them laugh. You know, you have to do whatever’s necessary to reach them...”

9. Empathetic care
“I try to put myself in their place and how I want to be treated… To see them smile, just to see in their eyes how appreciative they are with the level of care that you’re giving them. You know, it just makes a big difference to me to see them feel comfortable with me. To know that with me around, I can make them have a better day.”

10. Providing empathetic, holistic, person-centered care
Requires understanding the needs of the person with dementia
Providing not just for the person’s physical needs
Also engaging them in the process through empathetic understanding and communication

11. Moving from this

12. To this

13. Empathy and engagement

14. Key Points: (1)
Good caregiving must include emotional support and engagement along with physical care
Must be understood and valued by administrators, all staff and family
Should be a value considered in hiring and selecting a long term care community

15. Key points: (2) Must be part of initial and on-going training
Should be considered an essential aspect of providing care, not as something extra
Responsibility of all staff, family and caregivers to empathize, engage and communicate with people with dementia

16. And caregiving can productively be viewed as a journey

17. Communicating with people with dementia

18. As the disease progresses, the speaker with dementia
will have difficulty finding words     
will repeat words and questions
may make up words        
may speak less often to avoid embarrassing situations
may have difficulty understanding directions

19. As the disease progresses, the person begins to
make do with fewer words
have difficulty in interpreting words
offer speech that sounds inappropriate or incoherent
have trouble understanding written messages

20. Research on comprehension
Simpler sentence structures seem to work better
Both repetition and paraphrase were effective at improving comprehension for people with Alzheimer’s dementia
Kempler et al, 1999

21. Communication Interventions

22. Communication Interventions
Developed with Dr. Boyd Davis
To facilitate communication with persons with dementia
For use with family members, formal and informal caregivers, and students

23. Communication Intervention Techniques
Go-ahead signals
Indirect questions
Quilting

24. Use of “Go-ahead” signals
Use intonation to encourage your partner

25. Use of “indirect” questions
Instead of asking direct questions starting with Who-What-Do you-
What do you think about…Do you remember…
Try rephrasing as a statement or tag- question
You had two sisters, I believe
You had two sisters, didn’t you

26. Quilting a story in conversation
Speakers with dementia can retrieve some parts of their life story or past experience
With help, they can retrieve more details of the story or the experience

27. Quilting Steps
When you hear a phrase that sounds like it could be part of a larger “story,”
Repeat the speaker’s full phrase or sentence slowly, as if it were important, and then pause.
Record the detail as a reminder for future conversation.
Return to that detail in the next conversation you have, and phrase it as a statement.
(Moore & Davis 2002)

28. While you are Quilting You can help the person stay on topic
Be aware of desire to end a topic
Allow for response time

29. Keep people talking while Quilting
Verbal encouragement
Such as “indirect questions”
Non-verbal encouragement
“Pause-fillers” encouragement
Such as the “go-ahead”

30. Let’s try it -- Go-aheads

31. Indirect questions
Instead of asking direct questions starting with Who-What-Do you-
What do you think about…Do you remember…
Try rephrasing as a statement or tag- question
You had two sisters, I believe
You had two sisters, didn’t you

32. Quilting
With and without go-aheads

33. Conclusion
Communication and engagement are key components of caring for people with dementia
By remembering we are interacting with a Person with dementia, we can help that person maintain their dignity and sense of identify
And generally you’ll both be less frustrated