There are many proven techniques and suggestions for caring for and communicating with a loved one with dementia. Over the holidays – often an emotional time – this care and communication can be even more important.
Seven Strategies for the Holidays
Oftentimes, we aren’t able to be with our loved ones over the holidays. Whether we can be together or not, caring for a loved one with dementia during the holiday season can be a challenge.
It can be especially trying for families visiting from out of town who don’t have regular contact with their loved one. They may be shocked at how the dementia has progressed or manifests itself when they encounter them in person. This is not unusual.
My mother was a master at masking her dementia on the phone; she often sounded absolutely fine and perfectly coherent. Since I lived three hours away, the phone was our primary mode of communication. When I did visit, I was often surprised that I couldn’t find the person who’d been on the phone with me!
Here are five strategies to help make your holidays more enjoyable for all involved:
- Plan ahead...but don’t plan too much and be flexible. Know what to expect by talking to caregivers in advance. Discuss holiday celebrations with relatives and close friends in advance as well. Ensure that everyone agrees on what the game plan will be for the holidays. Talk about what’s expected, both socially, emotionally, and logistically. Don’t plan too much and be flexible, as dementia has a mind of its own.
- Prepare for crowded situations. Those living with dementia can get very overwhelmed with large crowds and too much noise or activity. Keep things calm. The holidays may involve large groups of people which may cause those with dementia to withdraw and be less comfortable socializing. Be prepared for situations like this and have a plan to move them to a quieter and less dense area if needed.
- Be sensitive during conversations. Those living with dementia may have difficulty following conversations and may be embarrassed by this. Take this into consideration when communicating, be patient, sensitive, and plan time for breaks and rest.
- Maintain a normal routine and keep it calm. If you are visiting from out of town, understand that you are likely disrupting the usual routine and that this could be stressful for someone living with dementia. They may be confused or disoriented by all the additional activity. Try to calibrate with and adhere to the person's normal routine as much as possible to keep the holidays from becoming disruptive.
- Build on past traditions and memories. Your loved one who’s now living with dementia may have been the cornerstone of family holidays and traditions and now they aren’t. Be prepared for this. It may be as difficult for you to accept as it is for them. Cherish the times that you’ve had but create new takes on old traditions. You may not be able to go to the Nutcracker ballet, but you can listen to the music from it in front of the fire while you page through old photo albums. Watch a favorite holiday movie together, or sing Christmas carols. Make the time you do have together as special as possible.
- Involve the person in holiday preparation. Keep your loved one as involved as possible – even if it’s remotely. Whether it’s helping decorate cookies or the tree in person or sharing pictures of what you are doing from afar. Make them feel they are still an integral part of the holiday and try to accept that the paradigm has shifted. As circumstances and the person's abilities allow, invite them to help you prepare food, wrap packages, or set the table.
- Focus on the positive. As you’re adjusting to how things are different this holiday season, try not to dwell on how things once were, but rather try to focus on the present. Hold onto and cherish those joyful, past, memories, but don’t let them depress you. Focusing on the positive, rather than becoming overwhelmed by the negative will not only help you cope and celebrate but also makes it easier for your loved one to relax and enjoy your time together.
Tips for Virtual Holiday Celebrations
For any number of reasons, loved ones may not be able to get together in person over the holidays. Whether it’s a pandemic that requires social isolation, health issues or travel restraints, sometimes it isn’t possible to gather together over the holidays.
Fortunately, in today’s digital world, there are many ways to connect virtually. Whether it’s FaceTime or Zoom or another digital platform, by using technology to connect with aging loved ones, you can still see and speak to your loved ones today no matter where they are. All that’s required is a wifi connection and a mobile device or computer with a camera. FaceTime and Zoom are both free applications/services that can be downloaded and used with relative ease.
It’s not the same as an in-person celebration, but it can still be fun. You can ask everyone to dress up or wear a hat; everyone can share their favorite holiday memory, even sing songs together. A grandchild can play piano, or with screen share (on Zoom) you can share photos of your holiday décor or images from previous holidays.
Caregivers can assist seniors with technology, or nearby friends can assist with these virtual celebrations by helping to prepare for the encounter, setting up the technology and of course providing companionship.
How to Set Family Members Up for Success
Set the stage for a happy, stress-free holiday encounter that everyone can enjoy.
- Communicate with other family members. If other family members are going to be present for the holidays – whether in person or virtually – make sure they know what to expect and set guidelines.
- Manage expectations. Coach family members in advance to manage their expectations; forewarn them that their loved one may not recognize them or may get them confused with another family member
- Speaking protocols. Whether you’re at a dinner table or on a computer screen, everyone can’t talk at once. Your loved one will get confused and be unable to follow the conversation. Take turns, and act as moderator by calling on each family member to speak.
- Be nice. Encourage everyone to be patient and kind and not to argue.
- Familiarize family members with the sections below: “How to Talk to a Person with Dementia” and “The Basics of Caring for a Loved One with Dementia”.
Talking to kids about dementia. Dementia is always a difficult topic to discuss, but it is especially difficult when it comes to explaining dementia to young children. Children can be very confused and even concerned when they see a family member exhibiting signs of dementia. Kids are far more cognizant than you might expect. Don’t try to pretend nothing is wrong. Here are some suggestions.
- Be honest. Try to be upbeat and positive, so they aren’t frightened, but be honest.
- Talk to them in terms they understand. In explaining dementia, reference an ailment (like a cold or sore throat) with which they are familiar. Explain that it isn’t like a cold, because it doesn’t go away, and it’s not contagious! While it won’t go away, it also isn’t going to keep them from having some fun.
- Assure them that the love is still there. Depending on the severity of the dementia, you may have to explain that grandma still loves a child very much even though she doesn’t always know who they are or understand what they are saying.
- Tell them emotions are okay. It’s okay to be sad or happy by what they see; grandma may be happy or sad as well. Make sure they know none of it is their “fault”.
- Encourage them to be kind and gentle. Be patient like they would be a baby brother or sister.
- Get them involved. Make sure they understand that they can still share special times. Show they can still connect and share with grandma, maybe by doing a jigsaw puzzle together.
- Explain that there may be surprises. Remind them that we don’t always know what behavior to expect and that it can change.
- Seek advice from others. Pediatric healthcare professionals, support groups can provide solid input.
- Books can help explain. My Singing Nana is a good book that helps explain dementia in a child-friendly and easy to understand manner.
- Writing can help. As children get older it may be helpful for them to journal about the experience.
How to Effectively Communicate with a Person Living with Dementia
One of the most challenging aspects about caring for someone with dementia is accepting and adapting to your loved one's new communication pattern. Whether it's a holiday visit or daily contact, there are ways to improve communication with someone who has dementia that will make it easier for you, as well as for them.
The most important thing is to be patient. Don’t interrupt, and let them complete their thoughts. Don’t correct them, even if what they are saying is incorrect. In most instances, it’s easier to agree. Their mind may not be tracking well.
Likewise, if they repeat themselves or tell the same story more than once, don’t tell them they did so. Let it go. Pointing out over and over that your loved one is wrong, and telling them that their memory is flawed will not help them.
The following techniques are suggestions for how to cope and communicate with your loved one as positively and effectively as possible:
- Make eye contact when speaking.
- Speak slowly and clearly.
- Allow your loved one time to respond and repeat yourself as necessary. It may take a while for them to process the information you’ve provided and then formulate a response.
- Keep instructions and responses simple and concise. Avoid long explanations and complicated responses.
- Keep body language and facial expressions relaxed and friendly. As loved ones lose their ability to understand words, they will begin to watch your facial expressions and body language in order to understand.
The Basics of Caring for a Loved one with Dementia
People with dementia may experience changes in judgment which may lead to confusion, frustration, or wandering. As a result, caring for a family member with dementia requires love and patience. Make sure you’ve done everything possible to ensure they are in a safe environment to reduce the risk of injury and avoid situations that could be confusing for them. Over the holidays Christmas trees, holiday décor, packages, and all the festivity and increased activity can lead to confusion or unpredictable issues, so this is especially important. Much advice has been written on this, but here are some basics:
- Keep walking areas clear. Arrange ample space for walking side-by-side, for wheelchairs, and walkers. Consider removing or relocating furniture (like low coffee tables) that may be a trip hazard. Limit or prevent access to places where injuries could occur such as a stairwell, and make sure all areas are well-lit. During the holidays, avoid blinking lights and real candles.
- Accept and understand communication limitations. As the disease progresses, your loved one may be unable to locate the words they want or may not be able to process the words you’re using — potentially leaving both of you confused and frustrated. Be calm and supportive; speak slowly in a relaxed tone and avoid criticism.
- Validate your loved one. The use of validation with your loved one with dementia rather than “reality orientation” is advised. Your loved one’s reality is as real to them as yours is to you; don’t deny them their experience. Show empathy and use supportive statements. Go along with them and use humor as appropriate.
- Be inclusive. Help your loved one feel that they matter and that they are involved no matter what stage their dementia may be. Include them in conversations, encourage their reminiscing. You may be surprised at what they do remember and can articulate.
When caring for a loved one living with dementia, we need to remember that the only predictable thing is the unpredictable. Be prepared. Don’t be surprised. And even if you are, don’t show it. Take deep breaths. And smile. After all, it’s the holidays. No matter what the constraints or circumstances, try to capture and savor the joy of the season.