Holidays and Alzheimer's or other related Dementias
Holidays can be meaningful, enriching times for both the person with Alzheimer's disease and his or her family. Maintaining or adapting family rituals and traditions helps all family members feel a sense of belonging and family identity. For a person with Alzheimer's, this link with a familiar past is reassuring.
These celebrations, special events, or holidays are often filled with sharing, laughter, and memories, but they can also bring stress, disappointment, or sadness. And, because they include other people, they can cause confusion and anxiety for a person living with Alzheimer's. He or she may find some situations easier and more pleasurable than others.
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. Families and caregivers may feel overwhelmed by maintaining traditions while providing care and adhering to safety precautions.
Holiday Tips for Families: Adjust expectations and find the right balance
Many caregivers have mixed feelings about holidays. They may have happy memories of the past, but they also may worry about the extra demands that holidays make on their time and energy. The stress of caregiving responsibilities plus holiday traditions can take a toll. It's important 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.
Set your own limits and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Your situation is different now. Communicate realistic expectations about what you can and cannot do.
When planning holidays for someone with Alzheimer's disease, it's important to adjust expectations and consider the person's needs:
- Communicate: Let family and friends know what you can and can't do, and what changes they might see in the person. You can also let them know how they can help, such as what activities they can do with the person.
- Consider the person's tolerance for change: Be prepared to adjust expectations based on how your loved one responds to change.
- Plan around their schedule: Consider celebrating earlier in the day if the person with Alzheimer's becomes confused or agitated in the evenings.
- Limit visitors: Consider limiting the number of visitors at one time.
- Create a safe space: Avoid decorations that could impact safe mobility and find a quiet space for your loved one if they become upset.
- Involve them in preparations: Have your loved one help with simple preparations, such as mixing batter or decorating cookies.
- Consider a potluck: If you've always hosted a large meal, consider having a potluck instead.
- Ask others to host: Ask someone to order and bring dinner or ask others to host.
- Consider video chats or phone calls: Video chats or phone calls are a great way to connect over 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. Consider simplifying your holidays around the home.
Prepare quiet distractions to use, such as looking at pictures or going for a walk, if the person with Alzheimer's becomes upset or overstimulated. Make sure there is a quiet space where the person can rest and have time to recharge. Try to avoid situations that may confuse or frustrate the person with Alzheimer's, such as changes in routine and strange places. Try to stay away from noise, loud conversations, loud music, lighting that is too bright or too dark, and having too much rich food or drink (especially alcohol).
Holiday Tips for Families: 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.
Explain to guests that the person with Alzheimer's disease does not always remember what is expected and acceptable. If the person with Alzheimer's is exhibiting unusual behaviors that may take place during the celebration, such as incontinence, eating food with fingers, wandering, or hallucinations, prepare others for this ahead of time.
If this is someone's first visit since the person became severely impaired, inform people ahead of time what they can expect. The memory-impaired person may not remember guests' names or relationships but can still enjoy their company and the emotions such a visit will convey.
Share with your guests that that changes in behavior and memory loss are the result of the disease and is not intentional. Stress that the meaningfulness of the moment together matters more than what the person remembers. They should not quiz the person or ask questions that might be stressful for the person to try to answer. Consider providing your guests with a list of topics for discussion that will help the day flow better.
These changes can be a shock and hard to accept. 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 know what works best for your loved one - share this with your guests so they can have a meaningful visit.
You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Sometimes a quick phone call is in order so your guests can share their feelings and ask questions. Here is an example of how you might communicate:
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.
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.
Holiday Tips for Families: Involve and prepare 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.
- Avoid overdecoration. Excess stimuli may be challenging for someone with dementia. Too many flickering lights or an abundance of decorations can be overstimulating and disorienting. Also, be aware of the person's sensitivity to factors such as loud noises.
- Create a safe and calm space. Avoid fragile decorations (which can shatter and create sharp fragments) and ones that could be mistaken for edible treats (which can create a choking hazard or broken teeth). Reduce clutter to avoid potential tripping hazards. Securely hook Christmas trees to the wall to avoid falls and utilize menorahs or kinaras with electric candles to reduce fire hazards.
- When making holiday plans, consider their comfort -- focus on what they enjoy and what will make them comfortable. 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.
- To get ready for visitors, begin showing a photo of each guest to the person a week or so before arrival. Each day, explain who the visitor is while showing the photo. Take that time to reminisce about who that person is and what role he/she played in the person's life.
- To the best of your abilities, keep the memory-impaired person's routine as close to normal as possible. When the routine is less familiar, the person may experience anxiety or confusion.
- During the hustle and bustle of the holiday season, guard against fatigue and find time for adequate rest.
Holiday Tips for Families: Adapt gift giving
When choosing gifts for someone with dementia, you can consider:
- Quality time. The best gift is often spending time together. Spending time at the a park, the zoo, or the theater. Even spending time at home looking through photos or listening to music.
- Soothing gifts. Gifts that can help with anxiety include a soft blanket or a handheld massage ball.
- Gifts that stimulate the senses. Gifts that stimulate the five senses can bring back pleasant memories. These include scented lotions, a lava lamp, or a diffuser with essential oil.
- Comfortable clothes. Comfortable clothes that are easy to remove and washable can be a good choice.
- Music. Research shows that music can have a positive impact on people with Alzheimer's.
- Photo gifts. Framed photographs or a photo collage can be a good gift.
- Homemade gifts. You can have your loved one help make homemade gifts for the family, like painting ornaments or decorating stockings.
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. Consider gifts that prompt interaction and engagement. Besides giving the person an activity, interactive gifts also have therapeutic value.
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.
Remember to always look for and suggest gifts that are designed for adults while also considering where the person is in his/her diagnosis or stage of dementia.
Dementia may change how someone navigates the world, but prior passions and interests may still be sources of joy. When considering gifts, it is important to meet the person where they are and honor their prior hobbies, likes, and dislikes they had prior to the onset of dementia. From there, you can adapt the gift. For example, if they loved to travel, perhaps consider a puzzle depicting their favorite place to visit. Or if someone loved to garden but now struggles with the activity, a photo book might be more suitable.
