By CHELSEY BYERS GERSTENECKER
November is National Family Caregiver's Month. In 2016, the Alzheimer's Association reported that over 220,000 people in Illinois are living with Alzheimer's disease. In honor of all of the caregivers out there helping someone with Alzheimer's or another form of dementia, this article is for you and your loved ones as we enter the holiday season.
I could speak for a long time on this topic, or even write a book, as the saying goes. So how does one choose what is the most important information when they believe that, of course, it is all important?
The holidays can be tough for both families of and the individual with Alzheimer's for many reasons. This week, I want to focus on having a plan and suggestions for conversations.
The first thing to do if having a loved one with dementia is new territory for you is to prepare your family for your new normal. Your loved one may have changes in ability, appearance and behavior since family members were last together. Without preparing visitors, you may cause them to be anxious around the individual with Alzheimer's. Your loved one may feel this anxiousness or uncomfortableness and react. One way to prep family members is to send out a letter, email or text and let them know what the individual with Alzheimer's can or cannot do anymore. You can also talk about some conversations that they like to have and suggest how to be prepared for repetition of information or questions.
As a family, it may be important to think about traditions and adjust your expectations in light of the current situation. For some with Alzheimer's, too much noise and stimulation can just be too much and should be avoided. If it cannot be avoided, there needs to be a plan or a place in the home where they can be where there is less stimulation. Another option is to have a low-key place they can be where people can come visit one-on-one or in small groups. Keep in mind routines that work and schedule holiday gatherings around that when possible. For example, you may have a lunch gathering instead of a later evening meal in order to keep a normal daily schedule as best possible. Set limits as to how many gatherings there are or how close they may be so there is ample time to rest between for both the individual and the caregiver.
Be aware of triggers for the individual or signs that they are tired or need down time in order to manage or minimize possible behaviors. We all get grouchy or grumpy when tired, hungry, anxious or overwhelmed. We just have better coping strategies that we can use compared to someone with Alzheimer's. They are just trying to manage in that moment. We can help them by anticipating needs, planning our best, giving them the best environment possible and doing our best to communicate effectively.
Therefore, thinking about communicating effectively, here are some of my favorite tried-and-true tips for family members. Do not worry about what you are going to talk about or how it might go. Take that stress off yourself and just be yourself with just a couple extra things in mind. For the best scenario, limit distractions in the environment when possible. Remember that their short-term memory is affected, so asking about recent events is not the best idea. Instead, talk about things from the past. Pull out a photo album and look through memories together. People with Alzheimer's typically have their long-term memory through most of their disease process. Ask them about things that you know they are passionate about or have always enjoyed. Even if they can no longer travel, they may still want to hear about your trip and see your pictures, though it may be better to give the shorter version, not the detailed, long version. Since it is the holidays, ask them about their favorite holiday memory or holiday tradition or sing some holiday songs together.
It is important to be a good listener, but you also must have patience and understanding when communicating with someone with Alzheimer's disease. If they get frustrated when they cannot find the word or lose track of what they were saying, offer a guess as well as comfort and reassurance. Give them time and be comfortable with the time that it may take for them to communicate. Do not ask memory questions, as they can be confusing and difficult. You can simply share and let them chime in, as they want. Avoid criticizing or correcting if they say something that is wrong; just be in their world and with them where they are in their disease process. If they think that it is 1955, then it can be 1955. It is best to focus on their feelings and what they are telling you, not the facts. You will not win an argument with someone with memory issues. If you do not let things slide, you both will walk away from the interaction upset and frustrated.
Some things that you can do for the best communication is speak clearly and slowly and use short, simple sentences with familiar words. Use non-verbal communication to help if you communicate when you can by using props, pointing or hand signals as appropriate. Finally, please never talk about the person as if they were not there.
To read more family-life-related topics, visit the statewide family-life blog, 'Family Files,' at https://go.illinois.edu/familyfiles. For more information on family-life-related topics and programs, visit our local University of Illinois Extension website at https://web.extension.illinois.edu/cfiv/ or contact Chelsey Byers Gerstenecker at 217-333-7672 or firstname.lastname@example.org.