by Sue Moroney, RN
When celebrating the holidays—whether Christmas, Hanukkah, or Kwanzaa—caregivers often face physical, mental, or emotional challenges when caring for a loved one living with dementia. Many caregivers experience increasing stress as the holidays draw near. It is essential to plan and prepare for the holidays. Consider the most rewarding activities for your loved one and how you can help guests and family members feel at ease.
For the person living with dementia, play their 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, as it may add to his or her confusion. Include them in the baking, decorating, and gift wrapping, even if they can only sit and watch you prepare for the holiday.
Guests often feel uncomfortable talking to a person with dementia because they are unfamiliar with the communication problems the person may be experiencing. As dementia progresses, communication usually 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 typical early sign of communication difficulty is word finding. A person with dementia cannot remember the names of objects or people. They may replace the word with the wrong one or need help finding a substitute. 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 they repeat the same question less than a minute later. This may be a sign of increasing anxiety or simply forgetting that they have already asked the question. Instead of repeating the same answer, try redirecting the conversation to another topic. For example, “Mary, it is one o’clock in the afternoon; let’s get a drink. I am thirsty, are you?”
- Difficulty following a conversation. The person with dementia may not understand what was said, process the information too slowly to keep up with the discussion, not be able to focus long enough on the topic, or not be able 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 are jumbled up incorrectly. For example, “I cat outside chair.” As dementia progresses, word salad becomes more common.
Many guests may be uncomfortable about talking with a person with dementia. Prepare your guests with the following suggestions. Ask them to speak slowly and clearly, allow time for the person to process the information, and be patient while 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 make up incorrect information to fill in the gaps in their memory. Do not correct this information.
- If you need help understanding 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 without criticizing, repeating comments, correcting errors, or 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 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, 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 calm 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 house they grew up in. Again, planning is the key to a successful visit when taking a person with dementia to another home, a hotel, or an unfamiliar location for the holiday.
- Begin by preparing the person with dementia several days before the visit. Talk about visiting, remind him or her of who will be at the celebration, and show pictures of the friends and family attending.
- Because the person with dementia is unfamiliar, 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 overstimulation, feel unsafe or not in control, or 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: exceptional songs from their past that are associated with good memories.
- A helpful gift such as an identification bracelet or membership in a safe return program, if lost
- Easy-to-remove clothing or a weighted 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 while traveling, cars, hobbies, nature, animals, old movie stars, historical events, etc.
Caregivers can make the holidays brighter and more fun for everyone by incorporating some of these tips.
