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The NSPA Blog

How to communicate and connect with Dementia Patients

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Posted on August 17th, 2020 by Bettina Carlson, under Alzheimer's and Dementia, Caregiver, Caregiving, Sandwich Generation, Seniors, Tips & Resources

What is Dementia? 

Following is a very basic description of a very complex disease. If you are interested in learning more about the various types of dementia, there are many good sources to gather information from. The Alzheimer’s Association is a great and reputable source. 

“Dementia is not a single disease; it’s an overall term — like heart disease — that covers a wide range of specific medical conditions, including Alzheimer’s disease. Disorders grouped under the general term “dementia” are caused by abnormal brain changes. These changes trigger a decline in thinking skills, also known as cognitive abilities, severe enough to impair daily life and independent function. They also affect behavior, feelings, and relationships.” 

Please click on this link for more information. (https://www.alz.org/alzheimers-dementia/what-is-dementia)

The Challenges of Dementia

When we have a family member, a parent, or a spouse, who lives with dementia, the impacts of that are experienced by the entire family. And most often, it is rather challenging. 

The first signs of dementia most commonly are problems with orientation, memory, cognitive ability, and language, but it also impacts activities of daily living. They start small, inconspicuously, dismissible as “just forgetfulness,”  and decline over time.

Our family member might get lost on their way home; might more frequently forget where they left their keys; might forget to eat and drink; buy the same food over and over again, although they have plenty of it at home; ask the same question over and over again, although they received an answer already several times; want to go home, although they are at home, in the place they have lived in for decades; and so much more. 

There is no clear timeline for the decline, and no two people experience the various symptoms of dementia alike. 

But we know that those diagnosed with and suffering from dementia are afraid of losing their cognitive and physical abilities, and ultimately of losing themselves in this memory eating fog. They are afraid of not being understood, of being alone, of being a burden, of becoming invisible. 

They want to remain as active as long as possible; as autonomous as long as possible; as useful as long as possible; in other words – they want to participate in life! 

For family members, but also other caretakers, the decline in our loved ones often poses communication challenges, and more importantly safety challenges. This often leaves families helpless and frustrated. 

This frustration and helplessness get exacerbated when the loved one develops challenging or even aggressive behaviors, which is quite common. “Why is my mother, my spouse, etc behaving like this? I do all I can do! I don’t understand what is going on!”

What helps the family to understand what is happening and be empowered in gaining confidence is to understand this disease and how to communicate with their loved ones. 

The aggressive behavior can be rooted in different reasons. The dementia patient may feel embarrassed; they may experience discomfort or pain but cannot express themselves verbally; they may be hungry or thirsty; they may be scared; they may be overwhelmed by the tasks expected from them; the may be overstimulated. 

Be aware, while our loved one might still be more or less able to speak words, they may say something that has nothing to do with their actual need; that is entirely and commonly possible with dementia, needs and words don’t match. That is how misunderstandings or lack of understanding happens. 

We must be cognizant of the fact, that in the later stages of dementia, verbal communication skills may not be realistic any-longer. 

How can we communicate then? 

How to “Communicate” with Dementia Patients

Depending on how far dementia has progressed, verbal and cognitive abilities will decline more and more until the very last stage, where the person may be bed-bound, mute, and requires total assistance. However, and very importantly, at all stages, including the end, this person still has sensory abilities and feels love and experiences a relationship with others! 

Doesn’t it make sense then, that communication will have to shift from verbal to less verbal and more sensory communication to meet the existing abilities? Here are tips on how we can “communicate” with our loved ones and create meaningful and trusting connections. Even at the very end!

• Always, at any stage, wait for a response! Whether it’s a verbal/oral response, could just be a deep exhale with or without sound; or sensory response, like a blinking of the eyes. It may take a few long seconds to process your input and respond or react! A lot of opportunities for understanding and connection get lost in the lack of time we allow ourselves to wait for a response. Plus, if we get impatient, it increases the stress level for both us and the patient. 

• Keep a routine. As a person loses their abilities, change becomes troublesome and scary. A routine provides predictability in feeling what to expect next. It gives our loved one a sense of “control”. It may even allow them to make safe(r) choices. 

• Provide verbal, visual, and tactile cues to gain our loved one’s attention and to help them process any instructions we may give them. The first cue always is to make eye-contact! If we talk about an object nearby, provide a visual cue by pointing to it. Or, for example, if our loved ones want to leave the house without a coat in the winter, just say, “It’s cold outside, let’s wear a jacket to keep warm,” and simply hand them their jacket. Or, if they are looking at the fork at mealtime, not knowing what to do, gesture them how to use the fork.  

• Be specific. Asking our loved one “Please set the table” includes unspecified steps that are cognitively challenging and eventually even impossible to be processed. Rather say “Please take the plates and place them on the table.”

• Use simple words and simple sentences that are easy to understand.

• Make eye-contact! And meet our loved one at eye level. It signals, “I’m with you,” “We are equal,” and thus allows for trust to be built. Avoid looking down at our loved ones. This can be perceived as intimidating, but at the very least it creates a feeling that they are “less than”. 

• Engage your loved one! All people want to feel useful, productive, and participate in life. Involve our loved ones in daily activities as much as possible. And expect this to take more time. 

Final Words

These tips apply differently at different stages and with different personalities. They are all helpful in creating a trusting connection. Yet, there still may be moments, when the caretaker, family or otherwise, may be so stressed and overwhelmed for whatever their reason, that frustration levels rise so high, that misunderstandings and arguments may arise. In such a situation, it is best to remove ourselves from this situation, catch our breath, and return when we are calmer. (Given the patient is not in a dangerous situation.) This is human! Give your loved one grace, and give yourself grace!  

And always, always remember, even if our loved one can no longer communicate with words or even gestures; and even if the person we knew has disappeared, and seemingly only a body is left behind, this is not quite true! Our loved ones’ senses are always present, in need of and ready to feel our respect and love! 

Please read our blog post Live in Their Truth! In it, we share more information on connecting with Alzheimer’s patients: https://www.northshorern.com/live-in-their-truth/

Resources

Alzheimer’s Association. https://www.alz.org/alzheimers-dementia/what-is-dementia

Live in Their Truth. Northshore Patient Advocates. https://www.northshorern.com/live-in-their-truth/

Teri’s Corner

Weight, health and avoiding the ‘COVID 15’. Daily Herald. https://edition.pagesuite.com/popovers/dynamic_article_popover.aspx?artguid=a8c9b8c6-5833-42a0-8998-378d15720cd0&appid=1031

How to make the most of telehealth visits. Daily Herald. https://www.dailyherald.com/entlife/20200711/how-to-make-the-most-of-telehealth-visits

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