5 challenges to avoid for a successful Holiday or large gathering with someone with dementia
Holidays, or large gatherings in general, can be a great time to reminisce we one another. They can be great for someone with dementia! Many of the things we love about the holidays may be too much for someone with dementia. But, that doesn’t mean a person with dementia can’t participate. There are ways make holidays more enjoyable for someone with dementia. I will go through some tips to manage some specific challenges a person with dementia may have. It is good to be aware of them, but know that it may not apply to every person. An assessment by a dementia expert can give you more specific challenges to be aware of along with solutions. But these are a great starting point.
1. The holiday environment can be overwhelming
There are kids running around, we all usually squeeze into a smaller than usual space to share a meal and open gifts. There may be a TV on, music playing, dogs running around, joyous laughter, or excited screeching. Aside from the noise, a person with dementia may be unable to say “Hey! I am overwhelmed. It’s too loud, too busy, and I need to get out of here!” They may seek a quieter place to recoup which may be a quiet room, or they may try to go outside for peace and quiet. Here are some things you can do to manage this challenge:
- Have a quiet place for the person with dementia to recoup.
- Watch for non verbal cues of being overwhelmed such as pacing, fidgeting, covering their ears, or facial expressions that indicate frustration or annoyance.
- Invite them to go to a quieter room every so often by saying “Hey, _______, why don’t we go sit in the other room together.”
- Play music that the person with dementia enjoys
- Provide seats on the outside, rather than in the “thick of the action”, of the room or table.
2. Traveling long distances may be difficult.
Typically, traveling with someone with dementia isn’t something I recommend. The transition requires adjusting to a new environment, even if it is one they’ve been to before. Transitions may be tough for someone with dementia and they may not be at their best after. The transition in coming back, is also difficult. So, it could be a tough few days for your loved one. However, if you would like to travel here are some things you can do to minimize this challenge:
- Make frequent bathroom stops.
- Be sure to go to the bathroom with the person. Some bathrooms have multiple exits and it may be hard to monitor all of them.
- Bring comfort items from home to the hotel or the house you’re staying at (even if it is not over night) to help with the transition adjustment.
- Be prepared to offer more assistance and take more time completing tasks, as they may not fully adjust to the transition
- Take pictures of the person before traveling and make note of their clothing just in case they do wander off.
- Put a contact card in their wallet or in their clothing pockets so if something happens, someone else may be able to find the card to contact you.
- If they carry an iPhone, initiate the “find friends” feature where you can share their location with your iPhone or a trusted person’s iPhone.
3. Feeling excluded from conversations
Recently, I was giving a presentation to hospital staff in Maryland and one of the attendees mentioned that over 15 years ago, she was home from college at a holiday dinner and her grandmother, who had dementia, kept asking “So you’re home from school?” and she named the school, and it was always the wrong one. This person would correct her grandmother, “Yes I’m home from school but I go to ________ not ________.” She said she did this over and over and started to become frustrated. While her grandmother was no longer alive, she was still curious about how to respond or communicate in that setting. It is likely you have experienced, or will experience something similar. So, here are the suggestions I typically give:
- Introduce yourself. “Hi grandma, it’s your favorite granddaughter, Mikki!”
- Introduce other people. Some people with dementia appreciate the introductions while others may be embarrassed they need it. I like to say something more discreetly like: “Wow, you have so many nieces and nephews. Here’s another one of your nephews, Tom.”
- Use the 90 second rule. A person with dementia may need up to 90 seconds to process and respond to what you’ve said. Maintain eye contact, limit distractions, and speak slowly while enunciating. 90 seconds is a long time. Time it to get used to it! You should receive verbal or nonverbal confirmation that it was understood, or wasn’t understood, within 90 seconds, then you may need to rephrase the statement/question. (Don’t stress too much! The longest any of my clients have ever needed was 17 seconds).
- Rather than correcting, you can say “Yes, I am home from school.” without correcting her. If you would like to try to gently correct for conversational purposes, you could offer a compliment about the mistake before correcting. Here is an example: “Yes I am home from school. And wow that is a great school! I bet you know I would have loved that school but I ended up choosing _________.”
- Make statements rather than asking questions. “When I was a kid and we went to Disney world, I loved that. My favorite part was __________. You seemed to love ___________.” This will encourage conversation and reminiscing.
- Join their reality. Your memory of events or interpretation of reality may not be the same as theirs. So go with it. You do not need to lie (so avoid filling in blanks or continuing the story with made up information) but you don’t need to correct their reality either.
- Encourage others to share about themselves. “Hey, Johnny, tell your great aunt about your school play.”
- Repetitive questions or statements may test your patience but that is usually an attempt at connecting with you.
- Coach other family members on how to properly communicate before the holiday gathering.
4. People wanting to offer help may be impeding on their independence.
My Poppy, who did not have dementia, loved being waited on. At holidays, someone would always make his plate for him before anyone else got a plate. He was treated like a King! However, part of this was our intense love for him and the other part was his physical challenges with walking while holding a plate (we ate buffet style). We also talked to him about what he wanted on the plate, how much, dark meat or white meat, did he want gravy on everything, on select things, or on the side? He still had the independence of choice. So, while there may be many well-meaning family members trying to help, helping can feel like an independence struggle for someone with dementia. I would argue that sometimes this can feel more intense for an older adult with dementia than for an older adult without dementia. I have some ways we can encourage independence while still providing assistance:
- Use some of the communication techniques listed above.
- Before helping, say that it is something that would make you feel good to do rather than the person needing your help.
- Avoid saying “I don’t want you to fall/drop the plate/choke, etc.” Instead, do say “It makes me feel good when I can get your plate. You’ve done so much for me since I was a kid!”
- Ask their preferences and offer their choices or options. Even if you know exactly what they like, still ask and have a conversation about what they’d like to eat, do, etc.
- Offer simple options: this or that.
- Have proper eating accommodations. Perhaps they use a plate bumper or a special spoon. Maybe they use finger foods now. Offer those same options.
- They may take longer to eat so have someone there to sit and chat with them. Have a cup of coffee or a glass of wine while they finish their meals.
- Have appropriate bathroom accommodations for them as well. Perhaps that is having extra products handy or a toilet seat riser with handles on the toilet.
5. The person with dementia may have a different schedule than ours.
The life and symptoms of someone with dementia are ever changing. So, one of the most important parts of celebrating the holidays with someone with dementia is being flexible! You may think your loved one can last through an entire meal, but do not be surprised if you get to the location of dinner and they’re ready to leave almost immediately. When I directed a dementia unit, I often worked Christmas day. Several residents would be picked up from family members and would come back in an hour and a half because they got to the location, the resident said “hello” to everyone, and then they were ready to come “home.” So, here are some tips on accommodating their world that we are living in:
- Have a plan that allows for flexibility
- If your loved one tends to be better in the morning hours, you may have to shift your celebrations to earlier in the day.
- If they’re living in an assisted living community, you may want to host a celebration there.
- You may choose to have a separate celebration with the person with dementia at another time or on another day.
- You may start making new memories or traditions.
Holidays can be a great time to share with families but being aware of these challenges may help everything run a bit more smoothly. The most important point is that you are living in their world and we have to adjust accordingly. Let go of all expectations, adopt a “So what?” attitude, and go with the flow! If you need more specific problem solving, you may want to consult a dementia expert.
These tips were written for the holidays but can apply to all large gatherings. Enjoy!