by Sue Moroney, RN
The holidays can be meaningful, joyful times for both the person living with dementia and his or her family. Keeping family customs and traditions helps all family members feel a sense of belonging and continuing family identity. However, the holiday season can also cause mixed feelings for a person living with dementia and their family.
It is necessary to balance doing holiday-related activities, with taking care of your own needs as the caregiver, and those of the person with Alzheimer’s disease or other type of dementia.
It is important to set limits because your family situation has changed. Decide what will work for you and for the person with dementia. It is not necessary to live up to what others expect, or to continue every tradition from the past.
The focus must be on the person living with dementia and what will work best during holiday celebrations. Changing holiday traditions is hard, but well worth the planning and effort if both the caregiver and the person with dementia have a more relaxing and fun holiday season.
To help the person living with dementia enjoy the holidays involve the person with dementia in simple holiday cooking and decorating. Prepare together by mixing the batter, decorating cookies, helping to wrap presents, open holiday cards or make simple decorations. Participating in preparing for the holiday, may give the person the pleasure of helping and the fun of anticipating.
It is important to maintainthe person’s normal routine as much as possible, so that holiday preparations don’t become exhausting, disruptive or confusing. Changes in their daily routine can be challenging for someone living with dementia. If the person usually takes an afternoon nap, build in time for that.
Think about meaningful activities, such as reading a favorite holiday story, looking at family photo albums, watching a favorite holiday movie or sing holiday songs.
Activities for Christmas celebrations:
- Linking paper chains
- Making wreaths
- Wrapping presents or putting bows on the top of presents
- Stringing garlands of popcorn or berries
- Sealing greeting cards
- Listening to holiday music
- Reading holiday or religious stories
Taking walks outside to see the neighborhood decorations or take a drive to see the holiday lights are also fun activities.
Activities for Hanukkah celebrations:
Have the person with dementia help with the stirring, mixing and baking traditional foods such as Latkes and desserts such as Sufganyot (jelly donuts). Other suggestions include:
- Wrapping presents together
- Help with lighting the Menorah- substitute an electric one or don’t leave lighted candles unattended
- Listening to holiday music or singing holiday songs
- Reading holiday or religious stories
Remember to focus on the activity itself and not the outcome. Spending time together and making something together is a gift. Who cares if the wrapping doesn’t lay down smooth, or the cookies don’t look perfect.
Participating may give the person the pleasure of helping and the fun of anticipating and reminiscing about past holiday celebrations.
If the person with dementia is no longer able to help with the preparations, have him or her observe what you are doing. Talk about the upcoming holiday and who will be visiting. Observing the preparations will familiarize the person living with dementia with the upcoming festivities.
It is important to plan and discuss the holiday celebrations in advance of the holidays.
Often family and friends may not realize the extent of the dementia progression and may have unrealistic expectations. For family living in another area or state, this is the time to let others know about any changes they might see in the person living with dementia.
For family caregivers, the holidays will create added work. Communicate realistic expectations about what you can and cannot do. Delegate some of the decorating or cooking to another family member or plan a smaller celebration. Allow others to help with food preparation or serving. This will give the host time to relax and spend time with the person with dementia, instead of working to make the holidays nice for the guests.
Think about the traditions that are really important to your family and keep those if possible.
When planning holiday celebrations, keep in mind that the added stimulation of decorations, festivities, presents, and new people may alter the behavior of the person living with dementia Too much stimulation may increase anxiety or even cause unwanted behaviors to occur.
Explain to guests, prior to their arrival, an honest update on the condition of the person with dementia before they arrive. Give anyone who will visit examples of possible socially inappropriate, unpredictable behaviors or changes in the condition of the person living with dementia. Providing a recent photo can help people prepare for changes in appearance.
Give examples of unusual behaviors that may take place such as incontinence, getting up and leaving the dinner table. Other examples of possible changes include:
- The person may become verbally inappropriate, for example, swearing, shouting, or making sexual comments
- The person with dementia may take food from another guest’s plate, eating food with their fingers, or wander about the house
- May be experiencing hallucinating (seeing or hearing things no one else experiences) or paranoia (accusing others of stealing personal belongings)
- The memory-impaired person may no longer remember the names or the relationships of the guests but can still enjoy their visit. Seeing the decline of a loved one can be very painful for family members if they haven’t visit in a long time
- Remember to meet the person with dementia where they are. Do not try to bring them into reality, instead, enter their reality
Safety tips to keep in mind when planning for the holidays are also important to think about. Avoid loud noises when decorating, as these may startle the person with dementia. Tone down decorations by avoiding blinking lights or large decorative displays that can cause added confusion. Avoid decorations that require a rearrangement of a familiar room or cause clutter, which could cause the person with dementia to fall.
Substitute electric candles for burning candles. Keep electrical wires from crossing the walking pathway. Some things to avoid include fragiledecorations that may get broken, shatter or create sharp fragments and decorationsthat could be mistaken for edible treats, such as flowers, artificial fruits and vegetables. Secure decorationssuch as a Christmas tree to the wall.
Play favorite music. Familiar or favorite holiday music may be enjoyable. Adjust the volume to be relaxing and not distressing. It is helpful to turn off the music when the person with dementia is trying to converse with guests, it may add to his or her confusion.
Guests often feel uncomfortable talking to a person with dementia, because they are unfamiliar with communication problems the person may be experiencing. As dementia progresses, communication often becomes more difficult. Explaining to guests some of the communication problems your loved one is having will help everyone understand and know how to have a more meaningful conversation. Common communication problems of dementia include:
- Word finding difficulty. A common early sign of communication difficulty is word finding. A person with dementia is unable to remember names of objects or people. They may replace the word with the wrong one or not find a substitute at all. As dementia progresses, word finding becomes more pronounced. Even remembering close family members names may be lost. For example, one person referred to his spouse as “it” because he could no longer remember her name.
- Repeating the same word, sentence or question over and over. For example, the person may ask, “what time is it?”. You tell them the time and less than a minute later they repeat the same question. This may be a sign of increasing anxiety or simply forgetting that they already asked the question. Instead of repeating the same answer over and over, try to redirect the conversation to another topic. For example, “Mary it is one o’clock in the afternoon, let’s go get a drink, I am thirsty, are you?”
- Difficulty following a conversation. The person with dementia may not understand what was said, is processing the information too slowly to keep up with the discussion, is not able to focus long enough on the topic or is unable to put the words together to respond to the conversation.
- Word Salad is communication that makes no sense. The person with dementia uses words that have no meaning, or that are jumbled up in the wrong order. For example, “I cat outside chair.” As dementia progresses word salad becomes more common.
Many guests may be uncomfortable about talking with the person with dementia. Prepare your guests with the following suggestions. Ask them to speak slowly, clearly, allow time for the person to process the information, and be patient waiting for a response. Other suggestions include:
- Take turns talking. Only one person at a time should be involved in the conversation
- Ask direct questions with simple yes or no answers, for example, “Mary, would you like a cup of tea now?” rather than “What do you want to drink?”
- Include the person with dementia in the conversation. Do not talk down to the person with dementia or act as if they are not there. Speak directly to them
- Allow time for the person with dementia to finish speaking. At times, a person with dementia will use confabulation, or making up information that is not correct, to fill in the gaps of their memory. Do not correct this information
- If you do not understand what the person is trying to say, ask them to point or gesture or try to determine what they might be trying to communicate
- Suggest ways for guests to listen patiently and communicate by not criticizing, repeating comments, not correcting errors and not interrupting
Ideally invite only a small number of guests, too many people all at once, may overwhelm the person living with dementia. This will be especially important if the person with dementia no longer remembers family or friends’ names or the relationships. If a larger group is expected, space out the time of arrival for the visitors. Too much noise, or too many people all at once, may overwhelm the person with dementia.
- Take turns with family members spending time with your loved one. Rather than everyone trying to engage at once allow each family member some special one on one time with your relative.
- Avoid disruptions. Plan a gathering at the best time of day for the person with dementia. Keep daily routines in place as much as possible.
- Celebrate earlier in the day, if possible, especially if the person with dementia “sundowns”. Sundowning is increased agitation, or confusion late in the day as the sun goes down.
- Provide a quiet place. If you are having guests over, provide a quiet place for the person with dementia to have time alone or to rest.
- Trust children. Most children know exactly how to act around someone with dementia. They are just themselves. Don’t worry about children upsetting your loved one. They bring pleasure and joy.
Whenever possible, try to celebrate in the person’s most familiar setting. Visiting family and friends is a fun way to celebrate the holidays, but for the person living with dementia, it may add to their confusion. Traveling to a new place could cause anxiety, fear or unwanted behavior. As dementia progresses, even celebrating in the family home may create problems. The person with dementia may have forgotten their current home and be looking for the home they grew up in.
When taking a person with dementia to another home, a hotel or unfamiliar location to visit for the holiday, again planning is the key to a successful visit.
- Begin by preparing the person with dementia several days before the visit. Talk about going for a visit, remind him or her of who will be at the celebration, and show pictures of the friends and family that will be attending.
- Because the person with dementia is in an unfamiliar place, locate an area where they can rest. Consider only staying for the meal and then returning home.
- Know that you may need to leave early. Plan for someone to take the person with dementia to their own home, if they become restless, anxious or tired.
- If the person says, “I want to go home”, honor their request and understand that they may no longer be able to handle the noise, or over- stimulation, or feel unsafe or not in control. They may be overwhelmed or simply tired.
Families often don’t know what to buy as gifts for a loved one with dementia. Advise guests not to give gifts that could be dangerous, complicated electronic equipment or pets. Good gift choices include:
- Music: especially special songs from their past that are associated with good memories.
- A useful gift: such as an identification bracelet or membership in a safe return program if lost
- Easy-to-remove clothing, or a weighed blanket for those with anxiety.
- Favorite holiday food: cookies, candy, or other treats the person with dementia always enjoyed
- Photo albums or a collage photo frame filled with copies of pictures from their past
- Materials To Sort: baskets of yard or fabric scraps to sort or rummage through, bags of large beads, keys, coins, large buttons, nuts and bolts, etc. Be careful of objects that could be swallowed.
- Games: Simple large games such as cards, puzzles, dominoes, etc.
- Picture Books: Large coffee table books that may trigger memories of their interests such as, places they have visited during traveling, cars, hobbies, nature, animals, old movie stars, historical events, etc.
The key to having a successful holiday is planning and preparing for the unexpected ahead of time. Decide what traditions are the most important to you and the family and always have a Plan B, or a back-up plan in case things don’t go as you hoped.
There is meaning to holiday time that includes love, sharing, peace, making time for others, giving, and spreading good cheer, the holidays may look different this year, but look for moments of joy.
