Fort Worth’s West Center helping first responders understand patients with dementia

While navigating the obstacles of evacuation and chaos during natural disasters like Hurricane Harvey can be traumatizing for everyone, it can be especially difficult for those who have dementia or Alzheimer’s or have a family member with dementia or Alzheimer’s.

The Fort Worth Business Press spoke with Jamie Cobb, vice president of community and caregiver education, at Fort Worth’s James L. West Alzheimer’s Center about educating volunteers and family members on how to interact with those with dementia and Alzheimer’s.

Can you give me an overview of the center’s role in the Hurricane Harvey relief effort?

As a leader in the practical care of people with Alzheimer’s Disease and related dementias, it is natural for the James L. West Alzheimer’s Center to raise awareness about how emotionally devastating an event like Hurricane Harvey can be to people with dementia and Alzheimer’s.

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The West Center understands the importance of supporting families impacted by dementia and, given the recent evacuation to the North Texas area of thousands of displaced persons, there is a pressing need to educate volunteers about the disease process and how to work with persons impacted.

We want to help people understand the best ways to interact and communicate with those living with dementia and Alzheimer’s because even though everybody is in a crisis, it’s even more difficult for somebody that doesn’t know what’s going on.

Sharing the Center’s Caregiver Education and Community Outreach best practices, the West Center partnered with the American Red Cross to provide training information for the thousands of first-responders and volunteers in service to the residents of Texas.

The Red Cross served as the central distribution and training contact for the information making sure that all volunteers, professionals, church volunteers working in the shelters, family members taking in a relative they haven’t been around on a long time; hotel and motel clerks, restaurant workers and everyone who needs to know how to relate to persons with dementia are prepared during this crisis.

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We have your tip sheet here (see below) about interacting with people with dementia and Alzheimer’s, what would you say are the most important tips?

It is important to know that people living with dementia cannot cope with or respond appropriately to certain situations, like an emergency, like healthy adults. Limiting excess noise, crowds and discomfort can help manage confusion and anxiety in people with dementia and offer them regular reassurance that they are safe an in the right place.

They are adults but they are confused and you aren’t going to be able to reason with them. The best thing you can do is to reassure regularly that they are in the right place, doing what they’re supposed to be doing and they’re going to be okay.

How many people is the center working on educating?

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Working in partnership with the American Red Cross, the Center will educate and prepare thousands of volunteers over the next several weeks and months through the dissemination of the tip sheet.

We were able to disseminate this information not only in North Texas and in Houston, but I know JPS sent the information to their emergency department as well. Whether it’s a reminder for somebody or [they’re learning for the first time], it’s a nice thing to have.

How are you working to educate the volunteers, is it just a matter of sharing the tips guide and spreading the information, or is there more involved?

In the Houston, North and South Texas and areas with emergency shelters, the information and tips will be shared via the American Red Cross.

Volunteers and caregivers in the North Texas Area can contact the James L. West Alzheimer’s’ Center via phone 817-877-1199 to enroll in planned and ongoing education classes ranging from caregiver education to stress management. Class listings and schedules may also be found online at jameslwest.org

How long has this effort been going on within the center and with the Red Cross?

The Red Cross relationship and connection was formed in response to Hurricane Harvey and is an outgrowth of the Center’s relationship with the United Way of Tarrant County and President TD Smyers.

When called upon, TD warmly responded to the West Center’s inquiry about sharing tips for interacting with persons with Dementia and, given his former role at the Red Cross, quickly connected the Center with the Red Cross Leadership.

The James L. West Alzheimer’s Center is an important partner in Fort Worth in the areas of care and education related to Alzheimer’s disease and related dementia.

Any other comments?

I know this is difficult for everybody, but somebody with dementia they don’t have the capacity to understand what’s going on… you’re not going to be able to explain it to them, they’re not going to eventually “get it.” So not only is it hard on them it’s hard on the volunteers and the family members and everybody else around that are working with them. Take a few deep breaths… take advantage of all the resources available to them… be aware of that and have a lot of grace and respect not only for those with dementia but for those around them as well.

Please see the tip sheet below, and for more information, please visit http://www.jameslwest.org.

People living with dementia will be more confused and disoriented in an emergency situation.

They may not be able to appropriately respond and manage emergency/changing situations like a healthy adult.

— Limit Stimulation

–Lower noise level, is there a glare from lighting or shadows on the wall, sensations (hot/cold), too many people in room can cause anxiety

–If you cannot modify the environment try headphones to minimize noise or distract with music, use sunglasses, and layer on clothing

— Be prepared to assist with all self-care activities

–Make sure they are drinking and eating. They may not remember to eat or drink

–Take them to restroom on a regular basis to avoid any potential accidents. They may not remember where the restroom is located.

— Distract and Redirect

–Go for a walk

–Ask them to help (separate cans from boxes or fold blankets)

— Communication

–Avoid long, elaborate explanations. Give only NEEDED information and give it one thought at a time

–Provide constant reassurance: “You are safe and in the right place.”

–Watch their body language like pacing, fidgeting, anxiousness. Do not ignore these signs, intervene before they become a “problem”

–Anticipate unexpected reactions and wandering issues – do not leave them alone

–Watch YOUR body language. They will mimic what they see.

–Do not argue, confront or condescend. They are adults and expect to be treated as adults.

–Acknowledge and respond to their feelings (not necessarily their words)

–“You seem scared. I know you are, but you are in a safe place and we are together”

–Tell others about a diagnosis – volunteers and emergency response teams will be able to better assist you.

ASSISTING CONFUSED ELDERLY

People living with dementia cannot manage changing situations like a healthy adult. Confusion can lead to panic. Use the following tips:

— LIMIT AGITATION FROM EXCESS NOISE, CROWDS AND DISCOMFORT.

–Use headphones with soft music, sunglasses, a snack, and adequate clothing/blankets.

— REASSURE REGULARLY

–“I know you are scared. You are safe and in the right place and we are together.”

— USE SIMPLE SENTENCES, SLOWLY, CALMLY. USE A PLEASANT FACE.

–They cannot comprehend complex information.

— REDIRECT RESTLESSNESS BY GIVING THEM FOOD, WATER OR A SIMPLE JOB TO DO.

— THEY MAY NOT REMEMBER TO EAT, DRINK AND USE THE TOILET. CHECK OFTEN OR ASSIGN A BUDDY.

— COHORT ELDERS NEAR FOOD, WATER AND TOILETS. ASSIGN VOLUNTEERS TO STAY WITH THEM.

— PROVIDE WRISTBANDS WITH NAME, FAMILY NAMES AND CONTACT INFORMATION.