How Caregivers of People With Dementia Can Navigate the Holidays

A Rutgers expert on elder care suggests ways to plan gatherings that accommodate a family member with memory loss

Although the holiday season brings joy to many, it may mean added stress for those supporting a family member with memory loss.

Mary-Catherine Lundquist, the program director of Care2Caregivers, a peer counseling helpline (800-424-2494) for caregivers of individuals with Alzheimer’s disease and related memory disorders operated by Rutgers Behavioral Health Care, discusses how families can make the most of the season.

How can families adjust their expectations?
Know that it is OK to do things differently. You can scale back on decorating, cooking and shopping. Rituals and traditions that your family may have participated in previous years may be too stressful this year. Afterall, you are probably doing more to support your family member this year with day-to-day activities, so something must go.

Some caregivers forgo elaborate decorating and add a simple wreath or tabletop tree instead. You can light a pine-scented candle to evoke the smell of fresh pine. Purchasing premade food for special events can also be a time saver. Cookies purchased from a bakery taste good, too.

The best gift we can give to someone with memory loss and their caregiver is our presence.

Mary-Catherine Lundquist

Program Director, Care2Caregivers

What advice do you have when family gathers?
Be mindful of the time of day. Some individuals with memory loss may experience sundowning, which is increased confusion and restlessness as the evening approaches. If you are planning activities, choose the time of day your family member may be more alert and calmer. This may be in the late morning to early afternoon.

Keep visits short. It may be hard for your family member with memory loss to stay for an extended time at someone else’s house or even have people in your house for hours on end. Keep the visits brief and small. Changes in language and comprehension can make participating in group gatherings challenging for someone with dementia. So, have a few people over at a time. Too much activity can be overstimulating.

How can you prepare visitors for changes in your family member with memory loss
Talk with your out-of-town family beforehand and let them know about what may be different from last year.

Be specific. Say, for example, “He’s not talking a lot,” “She may ask the same questions over and over again” or “He may not know who you are.”

Discuss some behaviors they might witness, such as walking around the house, needing assistance in using the bathroom or having difficulty when eating. Encourage them to introduce themselves instead of expecting the person with memory loss to remember their name.

How do you suggest caregivers connect with the meaning of season?
Find ways to connect with what is important about this season. Holidays are an invitation to pause and be grateful for the enduring love and connection we so cherish. Things may be very different this year, but your love and desire for the best for your family members are constant.

Tune into gratitude. It’s OK to be sad about the changes you see in your family member and to mourn how much your life has changed, and you can also be grateful for what you do have. Making a list of what you are grateful for can be a wonderful way to honor the spirit of the season and jump-start the new year.

What are some ways to include your family member in activities?
Your mom may not be able to bake her famous cookies this year, but can she sit at the table and help you with measuring and stirring.

Music – especially singing songs together – is a wonderful way to share an experience. Although someone may lose the ability to converse, their ability to sing is preserved in a beautiful way. Plus, the holidays present a roster of familiar carols.

Other options include watching a classic holiday show or reminiscing by looking at old photos or even holiday greeting cards.

What are some ways you can help family caregivers?
If you are the primary caregiver, ask for and accept help. No one can go it alone. Asking for help is a sign of strength.

Tell family members what you need. Maybe it is help cleaning out the extra bedroom, help figuring out your computer or asking someone to stay with your loved one so you can go out with friends or take care of your own medical needs. Be specific. People love to be needed, so give them the gift of being able to help you.

Offer gifts of time and assistance. Call on the phone. Ask how they are doing. Ask the main caregiver what would be most helpful. Bring over a fully cooked meal. Offer to help with any household tasks or projects that the caregiver doesn’t have the bandwidth to tackle on their own. Run errands for them. And remember that caregivers need breaks all year long, so make it a habit to provide respite time for the main caregiver. Many caregivers neglect their own needs when caring for someone else so give them the gift of time.

The best gift we can give to someone with memory loss and their caregiver is our presence. Be there. Spend time. Individuals with memory loss and their caregivers often experience loneliness as the disease progresses. Just show up. Don’t worry about what you will say, just be present. Listen. Let them know they still matter and they don’t have to go through this alone.

In this season when we light candles against the darkness, be that light for each other.

For more information and resources, call the Caregivers2Caregivers helpline at 800-424-2494 or visit www.copsainstitute.com.