Tips for the holidays for Alzheimer's caregivers

The holiday season is upon us! Actually, if you’ve been out to any major big box store, the holiday season has pretty much been upon us since mid-July, and seems to creep back a bit more every year!

November and December are the traditional times for home gatherings and gift exchanges.  However, as family and friends gather to celebrate, symptoms of dementia with a loved one may become clear.  Memory loss may be more evident, anxiety sometimes increases in a crowd where there’s lots of noise and conversation, and unfamiliar surroundings may reveal challenges that don’t exist at home.  

With that in mind, here are some ideas for dealing with stress during the holidays. 

Adjust expectations: The holidays are full of emotions, so let guests know what to expect before they arrive and tell them how they can help. For example, what activities can they do with the person living with Alzheimer’s and how best to communicate with them. “Cross talk” or simultaneous conversations can be challenging for people living with Alzheimer’s – try engaging them one-on-one. 

Build on traditions and memories: Take time to experiment with new traditions that might be less stressful or a better fit with your caregiving responsibilities. For example, if evening confusion and agitation are a problem, turn your holiday dinner into a holiday lunch. 

Involve the person with Alzheimer's: 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 with dementia might confuse them with real food. Blinking lights may also confuse the person.) Focus on activities that are meaningful to the person with dementia. Your family member may find comfort in singing old holiday songs, watching favorite holiday movies, or looking through old photo albums.

Maintain a normal routine:  Sticking to the person's normal routine will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest.

Make sure others know:  If the person is in the early stages of Alzheimer's, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself.  Family 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 is in the middle or late stages of Alzheimer's, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited. These changes can be hard to accept. 

Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.  You may find it easier to share such changes in a letter or email that can be sent to multiple recipients. Here are some examples: 

"I'm writing to let you know how things are going at our house. While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.”

"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 being with us and so do we."

"Please treat ___ as you would any person. A warm smile and a gentle touch on ___ 's shoulder or hand 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."

Check in with the person living with dementia:  In the early stage, a person living with Alzheimer’s may experience minor changes. Some may withdraw and be less comfortable socializing while others may relish seeing family and friends as before. The key is to check in with each other and discuss options. A simple “How are you doing” or “How are you coping with everything?” may be appreciated. For people in the middle or late stages, consider rethinking holiday plans. Everyone is unique and finding a plan that works can involve trial and error.

When the person lives in a care facility:  A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:

Consider joining your loved one in any facility-planned holiday activities.

Bring a favorite holiday food to share.

Sing holiday songs and ask if other residents can join in.

Read a favorite holiday story or poem out loud.

Finally:  Be good to yourself. Give yourself permission to do only what you can reasonably manage. If you've always invited 15 to 20 people to your home, consider paring it down to a few guests for a simple meal. 

Let others contribute. Have a potluck dinner or ask them to host at their home. You also may want to consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer's and yourself from getting overtired. 

Do a variation on a theme. If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit and try to avoid any known triggers.

In the next column, we’ll look at gifts for those living with Alzheimer’s and for caregivers. 

If you have questions, call the Alzheimer’s Association 24/7 helpline at 800-272-3900 for more information.

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