The Holidays and Alzheimer’s

The holidays are often filled with sharing, laughter and memories. But they can also bring stress, disappointment or sadness. Due to COVID-19 and seasonal flu, holidays can create more risk for spreading infections, especially for older adults who tend to have underlying health conditions. A person living with Alzheimer's may feel a special sense of loss during the holidays because of the changes he or she has experienced. Caregivers may feel overwhelmed by maintaining traditions while providing care and adhering to safety precautions.

The safest option is to plan carefully for in-person holiday gatherings with people outside of your household. Make sure that everybody is vaccinated or recently tested, test for COVID-19 frequently and consider postponing or visiting virtually if you or the person you are caring for doesn't feel well. Below are tips and ideas for safely enjoying time with family and friends during the holidays.  

Vaccines

Vaccines — both the COVID-19 vaccine and the seasonal flu vaccine — are an important step in protecting the health and safety of people with Alzheimer's disease or other dementia, as well as their caregivers. The Alzheimer's Association strongly encourages their use, especially as friends and family look forward to gathering for the holidays.

Most older adults have been vaccinated. While vaccination greatly reduces the chances that somebody will become infected or of serious illness if they do become infected, vaccinated individuals can still get sick if they're exposed to COVID-19 or flu. Wearing masks, getting tested, physical distancing and other safety measures make visits as safe as possible for everyone involved, especially for our most vulnerable loved ones.

For more information on the COVID-19 vaccines, see COVID-19 Vaccine: Answers for Dementia Caregivers and People Living with Alzheimer's.

Adjust expectations

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  The stress of caregiving responsibilities plus holiday traditions can take a toll. The COVID-19 crisis is creating challenges that can feel overwhelming for many families affected by dementia. It’s more important than ever to take care of your physical, mental and emotional well-being.
• Arrange for a group discussion via telephone, video call, messaging app or email for family and friends to discuss holiday celebrations in advance. Make sure that everyone understands your caregiving situation and the safety precautions you're taking to help keep your loved one healthy.
• Communicate realistic expectations about what you can and cannot do. Sometimes this can create a sense of loss if you have to give up a role you always had, such as making the turkey, brisket or sweet potato pie, but think of it as a chance for another family member to start a new tradition.
• A conversation in advance is also a great time to let others know about any changes they might see in the person living with dementia. Read more about how to familiarize others with the situation during the holidays.
• Give yourself permission to do only what you can reasonably and safely manage — this may mean much smaller and more casual gatherings, if at all. No one should expect you to maintain every holiday tradition or event.
• Some people living with Alzheimer's become confused or agitated in the evenings (sundowning). Consider celebrating earlier in the day to work around this.

Connect through technology

• Use video call software like Zoom or Skype to gather virtually. Since it can be difficult to have conversations with larger groups over video, adding some structure to the call can help. Play a trivia game, sing seasonal songs or share pictures from past gatherings.
• Use video to capture and digitally send special moments, such as children opening gifts.
• Plan a video call to cook or bake a special recipe together.
• Record and send a "video holiday card" that includes personalized messages.
• Schedule a time to watch a favorite holiday movie together from separate homes. Talk on the phone, text or video chat while you watch.
• If your loved one struggles with technology, ask a primary caregiver — or staff in an assisted living community — if they can help facilitate a video call. If that's not possible, connecting with a simple phone call goes a long way toward feeling together on the holidays.
• Cross talk or simultaneous conversations can be challenging for people living with dementia or people with hearing impairments, so consider this when planning.

Celebrate in-person gatherings safely

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  Stay home if you are not feeling well or think you may have been exposed to COVID-19, flu, or another infectious condition. You can drive by and wave or hold up a sign, or visit through a video call.
• If the person living with dementia lives in a care community, be sure to check its visitation policies.
• If you are unvaccinated for flu or COVID-19, consider getting tested prior to visiting.
• Consider the levels of COVID-19 transmission in the community where the event is being held. Also, keep in mind that travel increases the likelihood of spreading or contracting COVID-19, so consider this when inviting guests who live far away or in areas with high rates of transmission.
• Consider planning an outdoor visit with hot chocolate and blankets, or go outside for a walk in the neighborhood to enjoy holiday lights and decorations.
• People in the middle or later stages of Alzheimer's may find groups overwhelming. They may prefer to sit somewhere quieter and not over-stimulating, but where they can still feel included. Take turns to be with them and have a conversation.

Familiarize others with the situation

The holidays are full of emotions, so it can help to let friends and family members know what to expect. If the person is in the early stages of Alzheimer's, relatives and friends might not notice any changes. But the person living with dementia may have trouble following conversation or tend to repeat things. If the person is in the middle or late stages of Alzheimer's, there may be significant changes in cognitive abilities since their last interactions with some family members.

These changes can be a shock and hard to accept. Make sure friends and family understand that changes in behavior and memory are caused by the disease and not the person. People can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts. If the person cannot communicate clearly, respond to their tone.

You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here is an example:

"I'm writing to let you know how things are going at our house. While we're looking forward to the holidays, we thought it might be helpful if you understood our current situation in advance.

You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___. I’ve enclosed a picture so you know how ___ looks now. Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.

Please understand that ___ may not remember who you are and may confuse you with someone else. Please don't feel offended by this. He/she appreciates your time with us and so do we. Please treat ___ as you would any person. A warm smile will be appreciated more than you know. Here are some resources on communicating with somebody with dementia.

We would ask that you call when you’re nearby so we can prepare for your arrival. With your help and support, we can create a holiday memory that we’ll all treasure."

For more ideas on how to let others know about changes in your loved one, join ALZConnected, our free online support community where caregivers like you share tips on what has worked for them.

Involve the person living with dementia

Involve the person in safe, manageable holiday preparation activities that he or she enjoys:

• Ask him or her to help you prepare food, wrap packages, help decorate or set the table.
• Avoid using candies, artificial fruits and vegetables as decorations because a person living with dementia might confuse them with real food. Blinking lights may also confuse the person.
• When making holiday plans, consider what will be most comfortable and enjoyable for the person living with dementia, while keeping safety in mind. Maintain the person’s normal routine as much as possible, so that holiday preparations don’t become disruptive or confusing.
• Focus on the things that bring happiness and let go of activities that seem overwhelming, stressful or too risky. Taking on too many tasks can wear on both of you.
• Build on traditions and memories and experiment with new traditions that might be less stressful or a better fit with your caregiving responsibilities, such as watching seasonal movies.

Adapt gift giving

• If you are concerned about COVID-19 or flu, or if the person living with dementia is easily overwhelmed by social interaction, ask people to send gifts in the mail rather than delivering them in person. Opening gifts over a video call like Zoom or Skype or even over a phone call can still feel very personal.
• Provide people with suggestions for useful and enjoyable gifts for the person, such as an identification bracelet or membership in a wandering response service. Or, suggest comfortable, easy-to-remove clothing; favorite music; photo albums of family and friends; or favorite treats.
• Advise people not to give gifts such as dangerous tools or instruments, utensils, challenging board games, complicated electronic equipment or pets.
• Depending on his or her abilities and preferences, involve the person in gift giving. For example, someone who once enjoyed baking may enjoy helping to make cookies and pack them in tins or boxes. Or you may want to buy the gift so that the person can wrap it.
• If friends or family members ask you what you’d like for a gift, you may want to suggest a gift certificate or something that will help make things easier, like house cleaning; lawn, home maintenance or laundry services; or restaurant or food delivery gift cards.