Caring for and Communicating

with People with Dementia:

We’re All in this Together

Dena Shenk, PhD

University of North Carolina Charlotte

Keynote address presented at the Montana Gerontological Society and Governor’s Council Conference on Aging, Helena, May 14, 2015

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Dedicated to my father, Jerry Shenk

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August 8, 1913 -- October 28, 2007

• 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.

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• 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.

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Case study

• drawn from a larger study “Direct care workers with older adults: In their own words”

• and an extension of that project

• analysis of data from 2006 through 2014

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Ms. Portia Rezk• former Direct Care Worker and Medical Technologist

(who distributes medications)

• Activities Director

• at special care assisted living community for people with dementia

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Ms. Portia Rezk

• Wife

• Mother

• Grandmother

• Caregiver

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Emphasizing:

• her journey as a caregiver and

• focusing on her emphasis on empathy and engagement as the key to “good care”

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One caregiver’s journey: Case study

• BS degree in Health and Physical Education and worked previously as a teacher

• became a caregiver for her mother:

“I first became a caregiver with my own mom, and first it was just part time running errands for her,

picking up her medications, sometimes taking her on doctor’s visits, outings, and just doing basic stuff for her at home.”

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Medical Technologist (Med Tech) &

Resident Assistant

• took the med tech class at a community college

• began working as a med tech at the special care community for people with dementia

• as well as a Resident Assistant until she earned her Certified Nurse Assistant (CNA) credential

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Activity Director

• plans and implements a daily schedule of activities

• documents activities for each resident

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Activity Director (2)

also responsible for getting members of the carestaff to implement activities and engage with the residents while providing care:

“It is a matter of engaging that resident, where they are at that particular time in that space and place.”

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Views on caregiving (1)

• holistic to include not only physical, hands-on care

• Responsible for total care and safety

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• “Give them as much of home and things they are used to seeing as you can.”

• “Provide some type of normalcy.”

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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.)”

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“Touch and wording are everything,

everything.”

“How you say what you’re needing for them to allow you to do.”

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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...”

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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.”

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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

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Being an Activities Director & looking

back:

“I see things from a different perspective now. I do miss being on the floor because I see so many opportunities to give care to our residents… I think there’s an educational piece that seems to be missing. I know that our caregivers go through dementia training, but there still seems to be that piece that’s missing. I don’t know if it’s the heart piece: H-E-A-R-T, or if it is a matter of them being more task oriented.”

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Piece that’s missing

“As opposed to looking at this person that is sitting in front of them, and understanding that that is a human being that you are giving perhaps medications to, or that you are shaving or that you are making their bed… There has to be a connection made and I think the resident has to feel that. When the resident feels that connection, they are open to allowing you to come into their space to care for them. But you have to make that connection in order for them to open up their heart and their arms to you.”

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Opportunities to engage residents

“The task might be shaving someone, you might bring a couple of the other men around and it could become

a reminiscing... So, it’s a matter of taking a look at the task and … changing how you look at what you’re doing… This is somebody that I can have a

conversation with, that I can share some information with… We’re here to pull on those memories… Let’s see if I can open up this person’s thought process in

some way. Do they have the time? I think that they do, it’s just a matter of looking at it differently and approaching it differently.”

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Moving from this

To this

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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

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Key points: (2)

• Should be a value considered in hiring

• 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 and caregivers to

empathize, engage and communicate with

people with dementia

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And caregiving can productively be

viewed as a journey

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Communicating with people with

dementia

Communication Interventions

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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

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Communication Intervention

Techniques

• Go-ahead signals

• Indirect questions

• Quilting

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Use of “Go-ahead” signals

Use intonation to encourage your partner

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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

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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

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Quilting Steps

When you hear a phrase that sounds like it could be part of a larger “story,”

1.Repeat the speaker’s full phrase or sentence slowly, as if it were important, and then pause.

2.Record the detail as a reminder for future conversation.

3.Return to that detail in the next conversation you have, and phrase it as a statement.

(Moore & Davis 2002)

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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”

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Conversations in general

• “The point of the conversation was not to talk about anything in particular but to gain enjoyment, for the resident, and myself.”

• “During my first visit to [location] I tried to direct the conversation and now I let the conversation lead me. I no longer have a pre-set topic I push to discuss.”

• “I feel I have become a better listener that tries not to take over the conversation.”

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Go-Ahead at work

▫ “I mainly used…the go-ahead. I felt as if this worked the best because it let the residents know

that I was listening to them and it made them feel as if I truly understood everything that they were saying.”

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Using indirect questions

• “I also asked indirect questions such as, ‘you said last time you have two daughters?’ This worked particularly well because [she] seemed to get excited when I brought up things about her life.”

• The indirect questions I had trouble with. It was very odd for me to say those questions. I am used to saying for example ‘what did you do?’ Instead I would have had to ask ‘oh so you worked at the bank when you were younger?’

Using quilting

• “Quilting came in very handy and helped the conversation stay on topic. I think the residents liked it when I used this form of intervention because it made them feel like I hadn’t forgotten them and that I had remembered what they had told me.”

• “When I tried using quilting, I felt like I confused her a bit. There was one instance where I used it and she looked at me funny, kind of like ‘how did you know that?’”

Non-Verbals

• “My experience taught me that communication is possible with anyone and that words aren’t the only form of communication. Body language and facial expressions can often speak volumes about a person.”

• “Even some of the residents who could not verbally express their appreciation for you would rub my arm or hold my hand to let me know they knew I was there.”

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Let’s try it -- Go-aheads

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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-

questionYou had two sisters, I believe

You had two sisters, didn’t you

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Quilting

• With and without go-aheads

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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

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