The holiday season is a time full of memories, traditions, and celebrations for many families, but they may look a bit different when a loved one is living with Alzheimer’s disease. Maintaining or adapting family traditions can help someone with dementia feel a sense of belonging and connection with their loved ones. However, celebrations this time of year often include special events — sometimes with a lot of people in unfamiliar places — which can cause confusion and anxiety for a person with Alzheimer’s.
This time of year can also be stressful and overwhelming for caregivers, not to mention it can come with a sense of loss with the changes your family has experienced.
But it’s still a time of comfort and joy, even if that means adapting celebrations or setting new expectations for the festivities. Caregivers and experts on dementia and caregiving share their best advice to help you prepare for (and enjoy!) the holiday season with your loved one:
Meagan Hency is the founder and CEO of Chapter, which helps families prepare for the challenges of caregiving and end-of-life. She offers caregivers ways to involve a loved one with safe, manageable holiday preparation activities that they enjoy:
“Something wonderful about the holidays is that they create opportunities for activities that can easily involve the family. As a caregiver, two key things you want to consider as you choose to involve your loved one are their current abilities and their historical preferences – i.e., what did they like to do before they got sick?
“For example, sending holiday cards out was always a favorite activity of my mom’s each year. In the early stages of Alzheimer’s, we picked out the cards together, and I helped keep her on task to write the cards. As her disease progressed, it became me writing and her signing what she could of her name. And now, in the later stages, I make time to sit with her while I do my cards, allowing her to watch and touch or look at the cards, but I have no agenda requiring her to accomplish the task.”
“In addition to choosing activities that are appropriate for the stage of a loved one’s disease, as the caregiver, you need to make sure you have the space, time, and flexibility to go at their pace. Focus on the process, not the product. It’s more important that your loved one enjoys the activity than it is that they produce something perfect.
“For example, if they’re helping you to wrap presents, don’t worry if the wrapping isn’t perfect. The value of this is spending time with them and helping them to feel involved. It can also help to break down large tasks into smaller, more manageable steps to help avoid frustration and overwhelm. For example, instead of asking your loved one to set the table for Thanksgiving, ask them to place the napkins.
“It’s also important to be flexible and patient. Your loved one’s brain just doesn’t work the way it used to. If they are having a bad day, it’s okay to skip the holiday activities and do something else instead. The most important thing is to spend time with them.”
She also offers advice to caregivers about ways to prepare family members for interactions with a loved one who has dementia:
“Preparing family members for interacting with a loved one who has dementia during the holidays can be really impactful to make the holidays a more pleasant experience for everyone involved. Yet, as the caregiver, it can be overwhelming to add “prepare family members” to the long list of your holiday ‘to-dos.’
“Consider setting up a family meeting or group call so you can share information about your loved one and set expectations with multiple family members at once. Keep in mind that your loved one’s experience will be better if family members know what to expect when they see them. Educate family members about the specific type of dementia your loved one has and how it affects their behavior, memory, and communication. Share any recent developments, changes in behavior, or challenges the person with dementia is facing.
“It can also be really helpful to discuss communication strategies in advance. Share the most effective way to communicate with your loved one. For example, encourage family members to use simple language, maintain eye contact, speak slowly, and be patient.
“Finally, since the interactions may be hard for some family members, you can share ideas for holiday activities that your loved one can participate in comfortably. This might include simple games, looking at family photos, or engaging in familiar traditions that can bring joy without causing stress.
“Remember that not all family members may fully grasp the situation, and that’s okay. Be patient, and be prepared to adapt as necessary during the gathering.”
Wil Thomas, an editor at Seniors Bulletin, urges caregivers and family members to prioritize comfort and safety throughout the holiday season:
“Spending time with loved ones can naturally be integrated with holiday preparations and activities. Whether it’s food preparation for a festive holiday dinner, decorating a tree, or wrapping presents, caregivers should be aware of their loved one’s safety and comfort. This may involve creating a calm environment, especially vital during the often hectic holiday season, which may provoke anxiety or a sense of being overwhelmed in individuals with Alzheimer’s.
“Caregivers also should ensure their loved ones are safe from harmful or dangerous situations. This includes providing supervision and assistance during tasks that involve sharp objects or heat, such as activities in the kitchen. It’s important for caregivers to remember that people with Alzheimer’s can more easily feel stress and fatigue. Taking breaks and rest is vital. The holiday season is also a great time to reminisce and share memories, which is a wonderful way to engage and feel included. Additionally, it’s an excellent method for helping those with Alzheimer’s to exercise their minds!”
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Don’t forget to take breaks, deep breaths, and to take some time outside!
Emily Baratta, Dementia Care Specialist, occupational therapist, and certified trainer for “Positive Approach to Care,” starts with a reminder that the holiday season can be overstimulating and even distressing for someone with dementia:
“Often, there is a change in their routine due to holiday celebrations. There can be bright lights and loud noises. Often, there are large groups of people coming together. It is important as caregivers to look at the sensory experience we are promoting for our loved ones. Are we promoting an environment where they can be successful and enjoy the moment, or is it causing stress?”
She offers another reminder: this time of year is a holiday “season,” not just one day, and caregivers and family members should encourage simple activities throughout the season rather than putting too much pressure on celebrating “the day.”
“Engaging in activities throughout the holiday season is so important for someone living with dementia. The key to engagement in activities is adapting the activities to meet your loved one’s skills and abilities and avoid feeling frustrated. If the task is too difficult, you may hear, ‘This is stupid,’ ‘This is for kids,’ or ‘I hate this.’ Once you adapt to make the activity more accessible, you will see less resistance to engaging. If it is too difficult for your loved one to write out their name while signing a card, make a stamp with their name. They can then do the one step of pressing the stamp to sign each card and will feel engaged and successful while decreasing the risk of frustration.”
Baratta urges caregivers and family members to consider what is safe and manageable for their loved ones:
“Your loved one thrives on routine, structure, and being around people they find comforting. It is important to remember that your loved one’s comfort is the top priority. It might be a good idea to try going out before that day to see how your loved one does. If you decide to take your loved one to a gathering. Ensure someone is identified to be the direct support. This direct support should know the person well and be able to help de-escalate when needed. This person should bring familiar items and activities to assist people with dementia, carry supplies for any accidents (incontinence), and assist with all daily toileting and hygiene needs. Additionally, this person should also be prepared to leave with the person if needed.
“If you think attending gatherings and events will be overwhelming, take the time to promote small positive moments for your loved one. Engage in simple activities. Some examples of activities: Decorating cookies, opening cards, signing cards to send to friends/family, making simple decorations- decorating a wreath, stringing garland, creating photo albums, looking at photo albums, listening to holiday music, wrapping presents, going for a walk together and looking at the decorations, or bringing a pet to visit.”
She also reminds caregivers that “less is more” during this season, and to ensure their loved one has a place that does not change during the holiday season:
“This could be their bedroom or a quiet room in the house. Keep decorations and festivities to a minimum if your loved one appears stressed by the changes. Maintain the person’s daily routine, keep times for meals consistent, and bedtime and time that the person wakes up if the person naps during the day, promoting that this happens even on holidays.”
Dr. Lucy Andrews, CEO, Author, and Aging Expert at Brain Guard System International, says upfront planning is crucial to ensuring a joyous and low-stress holiday with your loved one with dementia. She suggests identifying key factors that will guide you in creating a simple yet effective holiday plan.
She adds that caregivers and family members should understand certain aspects of their loved ones and behaviors before the holidays commence.
“Here are a few questions to address: Does your loved one withdraw and appear uncomfortable in a group setting? Desire to engage in conversations? Enjoy the group, but only for a brief period?
“By answering these questions, you can devise the best approach to engage your loved one while fostering a stress-free environment for the entire family. Let your family know if your loved one wishes to chat, and suggest keeping the interactions easy and uncomplicated. To prevent boredom or confusion, rotate family members who engage in conversation. However, if your loved one tends to withdraw in a group, involving them in holiday preparations with fewer people may be more beneficial. If they are willing and able to participate, engaging them in preparation activities can be a wonderful way for them to be involved.”
Dr. Andrews says another helpful practice is creating a holiday calendar that everyone can follow.
“This calendar should outline the daily events and activities leading up to the holiday. By doing so, your loved one can actively choose which activities they want to be a part of and anticipate when things will occur.”
She offers tips to maintain a loved one’s routine during holiday preparations to avoid disruption or confusion:
“Consistency is crucial for individuals who may experience confusion due to changes in people, situations, and surroundings. This is particularly important during the holiday season when numerous activities take place. Ensure your loved one gets sufficient sleep and maintains good nutrition. These factors are key to a successful holiday season. Plan meals and activities around their routine, allowing them to remain grounded while still enjoying the festivities. Be attentive to their stress levels and potential triggers for anxiety or other behaviors, and modify routines accordingly.”
And more tips to help caregivers ensure they are caring for themselves and enjoying the holidays:
“Being organized is paramount in reducing stress. Chart out a plan for holiday events in advance and determine tasks that can be completed ahead of time and who can assist. Everyone will feel involved and supported by sharing the workload with family and friends. Additionally, accomplishing tasks in advance can alleviate stress. Most importantly, after the holiday season, be sure to treat yourself to something special—a spa day, getting your nails done, a hike in the woods, or a nice dinner out. Engaging in activities that nourish and rejuvenate you will help you continue to care for your loved one during the holidays and beyond. Prioritize self-care and remain mindful of it throughout the season. A little planning can be the key to a stress-free holiday time.”
Dr. Andrews says honesty is the best policy when preparing for interactions with family members:
“Honesty is the best approach. Inform your family about your loved one’s dementia diagnosis and how they are doing; this will facilitate a smoother holiday experience. Challenging behaviors like repeated questioning can be frustrating for those around, so sharing strategies such as acknowledgment and diversion can be helpful.
“For instance, responding to a repeated question with, ‘Yes, Granddad, I hear you asking that. By the way, do you know who said they love you? Your granddaughter Kim, she is…’ can provide a distraction. Altering the physical environment can also help shift their focus.”