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 dshenk@uncc.edu Sandwich Generation 2017 Conference, University of Central Oklahoma, Wednesday, October 25, 2017.

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.

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.

Ms. Portia Rezk Wife Mother Grandmother Caregiver

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

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.)”

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

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...”

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.”

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

Moving from this

To this

Empathy and engagement

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

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

And caregiving can productively be viewed as a journey

Communicating with people with dementia

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

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

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

Communication Interventions

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

Communication Intervention Techniques Go-ahead signals Indirect questions Quilting

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

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

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

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)

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

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

Let’s try it -- Go-aheads

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

Quilting With and without go-aheads

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