Connecting when Dementia is Getting in the Way.

Written by Amy Small, LICSW

As our population ages, the number of adults struggling with diseases of the older years increases as well.  One such disease is Alzheimer’s Disease.  The chances that we will come into contact with someone who is struggling with this disease are, unfortunately, steadily increasing.

When we do come into contact with someone struggling with this disease, it can be difficult to know how to connect with them.  The types of conversations we had previously may no longer be possible due to changes in memory or information processing abilities.  If you are a caregiver for someone with Alzheimer’s Disease, that can bring communication challenges to the forefront of your everyday lives, greatly impacting your relationship with your loved one.  In this article, I’d like to give an overview of some communication strategies and tips to support you in connecting with people struggling with Alzheimer’s Disease in the community or in your own life.  For further information, I recommend the Alzheimer’s Association website at www.alz.org.

It is important to remember that, while the ability of a person with Alzheimer’s Disease to communicate is greatly impacted, they maintain their sense of self throughout their experience with the disease.  Their ability to express themselves through language and to understand language may change, but you can still connect to the essence of who they are.      

            Alzheimer’s Disease affects each person differently.  In the early stages, it may shift the person’s ability to communicate and they may have troubling finding the word they want to express.  It can be helpful to ask whether they want to be helped with words or not, for example, “How would you like to be helped with words?  Would you rather I jump in with a word that you may be looking for, or wait and allow some time for you to find it on your own?”¹  While it can help to use short sentences to aid in communication, it is important to not “talk down” to the person. ¹  Make sure to include them in the conversation and speak directly with them even if their language seems limited.  Their ability to understand may be more intact than their ability to express themselves. ²  Communication challenges and worries about making mistakes may lead a person with Alzheimer’s Disease to withdraw from conversations.  Including them and being sensitive to these feelings can help them engage and feel connected to you.       

            As the disease progresses, the person may have further problems with language such as increased difficulties finding words, repeating familiar words, inventing words, losing their train of thought, and difficulties following conversations. ¹  Connecting through ways other than language becomes more and more important.  Paying attention to your tone of voice, facial expression, and body language help support the feeling of safety and connection in a conversation. ¹  While a person with Alzheimer’s may struggle to understand your words, they will understand the feeling behind your words.  Your frustration and tension will come through just as will your patience and presence.  Taking your time in conversations and taking care to notice your own emotions will support a meaningful connection. 

            The person struggling with Alzheimer’s Disease may also communicate more through behaviors or gestures.  It can become important to respond to the emotions that seem to be expressed through the behavior rather than the behavior itself. ¹  This can require you to understand and join their reality in that moment.  The facts are less important than the feelings.  For example, rather than “Calm down, I am sure your keys aren’t really lost”, you might say “I hear how upset you are about the keys not being where they usually are.  It is so frustrating when that happens!  Can I look for them?” ¹  This type of attention takes patience and insight.  Give yourself time and self-care to be able to provide this type of listening and response.

Some other tools that can support a feeling of safety in communication are approaching the person gently, from the front, and at eye level, as well as calling them by name and identifying yourself and your relationship to them. ¹  Gentle touch can also feel grounding and caring.  As processing information becomes more difficult, it can be helpful to utilize questions that offer choices rather than open ended questions such as “Would you like tea or water?” rather than “What would you like to drink?”. ¹  

            In later stages of the disease, communicating in ways other than language may become primary.  Using our five senses together can support connection, such as listening to music, looking at photographs, spending time outdoors, and noticing smells, tastes, or sensations together. ¹  The most important thing to remember at any stage of the disease is that it is okay if you don’t know what to do or say. ¹  Your reassuring presence, respect, and caring connection are the most important to anyone in your life, including your friend or family member struggling with Alzheimer’s Disease.

Rose Murrin, LICSW, is the Kesher social worker at the synagogue.  Kesher is the congregational outreach program of Jewish Family Service of Rhode Island, funded by the Jewish Alliance of Greater Rhode Island, and currently active at Congregation Agudas Achim, Temple Torat Yisrael, Temple Emanu-El, Temple Sinai  and Congregation Beth Sholom. Rose may be reached at rose@jfsri.org or 401-331-1244.

 

¹Effective Communication Strategies. (n.d.). Retrieved May 23, 2018, from https://www.alz.org/northcarolina/in_my_community_64912.asp

²Coste, J. K. (2004). Learning to speak Alzheimers: A groundbreaking approach for everyone dealing with the disease. Milsons Point, N.S.W.: Transworld Publishing.

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Stuck? Try something kooky!

 By Rose Murrin, LICSW

As a psychotherapist, I find myself apologizing to people again and again. “I know this sounds weird. I too am a skeptic.” Usually, I’m talking about mindfulness exercises, progressive relaxation, visualizations, you know the stuff. And I am a skeptic. The first time I was offered reiki (a form of energy healing), I reluctantly accepted, but only if I could work on my paperwork while I got it. The reiki practitioner and my ego agreed to that. My mind did not get the message- it just chilled right out and refused to focus on my notes.

And I feel silly sometimes- admitting that I, too, try to use these tools. This is the stuff of illogical, hippy-ish people and that certainly is not me! But here’s the thing….it isn’t illogical (there is a ton of research to support it!) AND it works for me. I spent 2 hours trying to convince myself to write an article today, but kept finding errands on the other side of the building, emails to answer, calls to make. So, I forced myself to sit quietly, imagine leaving all the things that are nagging at my mind and heart in a safe place, and now, I can write. Some people run, draw, make lists, do yoga, pet a dog, clean the house….. you name it. Furiously scrubbing a bathtub might sound like the most kooky form of centering to some, but for some people it is just what they need to focus on what is most important that day.

Some people fall naturally into these habits. For others, it is hard to do. To get going and to let the worries settle is a difficult balance to find. We struggle to be kind to ourselves, but not to the point of avoiding life. We struggle to push ourselves to be better without finding ourselves in self-punishing, burned out places. If the lines between each of these poles could intersect so our gentleness and our healthy drive could work together, I suspect we would all have slightly different looking Xs. A little more gentle for one person may be just right. A little more drive for another might feel more comfortable. Wherever that point of intersection falls, it is ok to not hit the mark perfectly- this is where embracing the kooky stuff comes in. Embracing the kooky stuff almost requires a sense of humor. It reminds us that we are “playing” with ideas and skills to see what works and what doesn’t. Maybe today it is scrubbing the tub to see if it helps. Maybe tomorrow it is sitting still with our eyes closed, just noticing the sounds around us for a few minutes. At some point, in the midst of feeling ridiculous, we might find ourselves calmer, more focused, where we need to be in that moment. Then we can try that again or try something new the next time. Over time, you can fill that tool bag with a variety of stuff that works. There will be tools that work for different situations, distractions and feeling states, because you may want a variety of skills for a variety of situations.

If the idea of beginning to fill the tool box appeals to you- whether to be calmer, happier or more productive- begin to play with ideas. If you are struggling to get started, reach out to your Kesher social worker. We all have different skills to share and are happy to help get you started.

Rose Murrin, LICSW, is the Kesher social worker at Congregation Beth Sholom.  Kesher is the congregational outreach program of Jewish Family Service of Rhode Island, funded by the Jewish Alliance of Greater Rhode Island, and currently active at Congregation Agudas Achim, Temple Torat Yisrael, Temple Emanu-El, Temple Sinai and Congregation Beth Sholom. Rose may be reached at rose@jfsri.org or 401-331-1244.