The holidays can bring joy and excitement, but they can also contribute to added stress, especially for those with dementia and their caregivers. Whether you are preparing for Christmas, Hanukkah, Kwanzaa, or general end-of-year celebrations, the Banner Alzheimer's Institute has compiled our "12 Days of Holiday Advice" to help you make the best of the season for the person with dementia and for their family and friends. We have carefully selected 12 elements consistent with familiar holiday themes that are likely to help everyone not just "survive" this busy time of year, but create some memorable family moments in the process.
1. Make a list and check it twice --Families should work together to plan all of the necessary steps to avoid added stress for the person with dementia and/or primary caregiver. This will include planning specific holiday activities and celebrations -- which ones to attend and which ones to pass on, who will host the celebration(s) and at what time of the day to best accommodate the person with dementia.
2. Remember the reason for the season -- This is a reminder to keep things simple during a very hectic time of year. Everything being considered during the celebration -- from gatherings, gifts, food preparation, holiday greetings and other traditions -- must be scaled back. Excess will only create more stress for both the person with dementia and the caregiver alike.
3. No room at the inn -- For family and friends visiting for extended stays, we recommend that alternate plans for lodging be made in lieu of staying with the person with dementia and the family caregiver. This will allow for the person's normal routine to be maintained and also to prevent excess fatigue from hosting family and friends. Likewise, if the person with dementia and the caregiver are traveling, consider booking a room close to family to allow for additional quiet and restful periods.
4. The Grinch who stole Christmas -- Nothing ruins a gathering like someone with a grudge or bad mood which can sometimes lead to conflict. Whether there are long-standing resentments, disagreements or hot-button topics, the family must be aligned, in advance, that these will not be (re)visited in front of the person with dementia as this will cause upset in a person who can no longer manage emotions effectively.
5. I'm dreaming of a white Christmas -- We often hold unrealistic hopes for the holiday season, so it's important to manage expectations relative to the person with dementia and what that person is capable of at this point in time. Family and friends may not be aware of the extent of the person's diminishing abilities, therefore the primary caregiver must communicate clearly with family and friends on what to expect and how they can be helpful to you and the person with dementia. For example, you may wish to share through a letter, email or phone call, "Mom can no longer prepare a big holiday meal, so I have ordered food from a local store." Or, "Dad rarely initiates a conversation so you will have to lead him, and he loves to talk about the following topics..." Be as clear as possible so family and friends can be supportive and successful.
6. My two front teeth -- Giving gifts is a favorite part of holiday celebrations, but keep in mind that people with dementia have difficulty with planning, so providing the person with a pared down list will minimize being overwhelmed. Remember to shop during non-peak hours and limit the time spent to no more than 90 minutes. If the person is able and interested, involve them in wrapping, or better yet, use gift bags.
7. Santa's little helpers -- This serves as a reminder that caregivers need ongoing support and practical assistance throughout the year. While friends and families may surround the person with dementia and the family caregiver during this festive time of year, when the holidays end and life gets back to "normal," their visits are less predictable or frequent. Routinely call the caregiver just to keep in touch, and to allow them to vent. Also, offer to assist with errands, drop off a meal, or assume the caregiver role for a few hours so the full-time caregiver can have a break. For distant family and friends, phone calls, gift cards for meals, and providing cash for respite care are additional ways to support the caregiver from afar.
8. A long winter's nap -- It is essential to manage fatigue for the person with dementia. These individuals tire very easily, particularly when there is too much commotion, too many activities, too many people, etc. Additionally, travel is fatiguing as people move out of their comfort zone and routines to less familiar settings. In managing fatigue, family and friends need to consider visiting or holding celebrations during the person's best time of day along with keeping these visits/celebrations to no more that 2-3 hours, providing a quiet space following a meal, and honoring the person's request to leave if he/she says it is time to go. Or, if you see the person with dementia becoming more confused, agitated, anxious, or belligerent, make sure to have an exit plan in place.
9. My favorite things -- Food and drink are important to any celebration, but once again, the principle of keeping it simple is best. Rather than have the caregiver or person with dementia worry about cooking, families can organize potlucks with favorite dishes, order food from a restaurant or grocery store, or make reservations at a local restaurant and start a new tradition.
10. A Charlie Brown Christmas -- Traditions are a special part of almost every holiday celebration. These traditions are tied to long-term memory -- usually the part of memory that is most intact in those with Alzheimer's disease. Singing Christmas carols or other familiar songs, lighting a menorah, reciting prayers, and eating traditional foods are just a few ways in which the person with dementia can better connect to both the holiday celebration and the people involved.
11. All is calm -- Peace and quiet can be lost during the hustle and bustle of the holidays. It is essential to minimize overstimulation by avoiding too many holiday decorations, too many people, too much noise, too many activities, or too much pressure to perform when cognitive reserve is being lost. Consider quieter celebrations with fewer guests, or more frequent but smaller gatherings when the family is large.
12. Auld Lang Syne -- A reminder of days gone by, the song that often rings in the New Year, prompts us to reminisce about the past. Since long-term memory is most robust in those affected by Alzheimer's disease, holiday gatherings provide a perfect time to reflect on favorite stories and memories. This is a great time for grandchildren to hear precious stories of their heritage before those stories are lost. You could also consider revisiting a favorite card or board game, and the person with dementia can always be partnered with another family or friend so they can feel success in playing something that has become unfamiliar. And laughter serves as a wonderful and universal reminder of the joy of being with beloved family and friends.
On behalf of Banner Alzheimer's Institute and its Family and Community Services team, we wish you a season that provides you with good health and good times with family and friends.
As you finalize your shopping lists, if you are looking for a free and simple way to honor a family member or loved one with Alzheimer's or a caregiver this holiday season, consider joining the Alzheimer's Prevention Registry. The Registry is an online community of people who have been touched by Alzheimer's in some way and are dedicated to ending this horrible disease. Registry members receive news updates about Alzheimer's research, brain health and upcoming clinical trials. They also connect on the Registry's social media pages (Facebook & Twitter) to share stories, get advice and find inspiration. Join the Registry today: www.endalznow.org.