The holidays can be challenging for families visiting loved ones with memory loss or dementia. Family caregivers and dementia expert Carol Bradley Bursack share their advice for making sure everyone has a good time.
Sarah Akin hopes this holiday that caregivers give themselves a little grace — and that visiting family do the same.
Akin, who is 35 and lives in San Francisco, cared for her father until his death from early-onset Alzheimer’s in 2021 at age 62. She said the holidays can put extra pressure on family, especially caregivers, to act a certain way or to be on high alert for cognitive changes.
“When I cared for my dad, I learned to not take on too much of the holiday stress and did what worked for me,” Akin said. “If that meant skipping a family visit, I learned how to be honest with myself and others and asked them for their compassion and understanding.”
Despite learning how to protect herself from a dreaded bout of caregiver burnout, Akin found herself comforting well-meaning relatives at family gatherings when they didn’t know how to respond to a loved one with memory loss, pushing her closer to the edge of mental and emotional exhaustion.
“I wish more people knew that if you’re visiting a relative with Alzheimer’s who you don’t see often, remember the disease is every day for them and their caregivers, and that being sensitive with comments and reactions is really important,” she said.
For families navigating a loved one’s dementia or Alzheimer’s diagnosis, the holidays can often put cognitive declines in the spotlight, especially for those who don’t regularly interact with the person living with dementia.
Carol Bradley Bursack, a dementia caregiving expert, elder care columnist and author of Minding Our Elders, suggests understanding how the disease affects a person’s perception of reality is key. Things like introducing oneself, keeping gatherings small and resisting the urge to force remembering the past can go a long way to make everyone comfortable.
“If we haven’t seen a loved one in a long time and they’re experiencing memory changes, yes, it can be shocking to greet Grandma and she doesn’t know who you are,” Bursack said.
Bursack points out the person living with dementia isn’t necessarily living in the same reality as the rest of us, which unfortunately can mean lack of recognition.
“Try not to walk in and think Grandma will immediately recognize you and your place in her world,” Bursack said. “Introduce yourself by saying something like, ‘Hi Grandma, it’s your granddaughter Ann.’”
Bekki Willerton, a caregiver for her father with dementia, agrees. She adds that speaking slowly and pausing between sentences gives the person time to catch up in their mind and make sense of the information.
“I found introducing the person helps,” Willerton said. “Maybe even use how they are related to him, like ‘your sister, your mother-in-law; that kind of thing.”
Keep gatherings small
Larger gatherings can be overwhelming — and stressful — for someone living with dementia. If it’s important to you to really connect with the person, Bursack recommends visiting them one-on-one. Alternatively, keeping the immediate group smaller is also a good idea, she said. Loud noises and too many conversations going on at once can create massive confusion.
“Too much going on can cause the person living with dementia anxiety when your intent is to offer companionship and pleasure,” Bursack noted.
Don’t ignore them
It takes a little thought and intention to keep a person with dementia engaged. Small conversations are a smart way to include the person living with dementia, according to Bursack.
“Don’t talk around or over them to communicate with the other people in the room. Save catching up with them for another time,” she said.
Experts also advise that if you’re noticing your person seems disengaged in conversations, another reason might be that they’re experiencing hearing loss, which often goes hand in hand with aging and dementia. Hearing aids, studies show, can go a long way in helping them reengage and communicate.
Focus on the present moment
Depending on the individual and their dementia stage, reminiscing can cause confusion or agitation if the person is unable to recall a memory.
In that case, Bursack suggests focusing on the present and making positive, affirming comments.
“You can say, ‘It’s so fun to see you. You’ve always made me feel so loved’ (or welcome, or whatever is appropriate in your relationship),” Bursack said.
Include the kids
Florida-based family caregiver Elaine Hedary, 34, recently moved her mother into memory care and said her family gets great results when children are encouraged to interact with the loved one experiencing memory loss.
She often employs coloring books, mess-free painting and decorating cookies in activities for children and elders to do together.
“Encourage your kids, if you have them, to spend time with the loved one,” Hedary said. “If the person is still ambulatory, dancing to music or having the kids dance around while they ring a bell” can be fun for everyone.
Consider the caregiver
Molly Heinevetter, 29, who is a caregiver for her mom in Atlanta, said it was helpful to her father when the family took on caregiving duties for a few hours so he could get some downtime.
“I think the thing that helped my dad (caregiver) the most while my mom was still at home was letting us take over for a while. Even if that was just sitting with her watching a movie for a few hours. He felt like he always had to be on, so if he could get a few hours alone to recharge, it was better for all of us,” Heinevetter said.
Take frequent breaks for quiet time
Holiday gatherings with family can take a lot out of the most extroverted among us, let alone someone with cognitive deficits. If you notice a loved one with dementia is getting agitated (pacing, asking lots of questions), bring them to a quiet room for a rest away from other people.
“Help them regroup and be patient with them,” Bursack said.
Make visits to the facility extra special
If a loved one with dementia lives in a memory care facility outside of the home, New York-based family caregiver Steph Garcia suggests bringing the party to them.
Garcia helped care for her mother with dementia until she died in 2020.
“We were able to book a conference room (at the facility), decorate it, sing songs, open gifts and celebrate the moments. We tried to make it as traditional as possible. My cousins even brought their school instruments and played a concert,” Garcia said. “It was our last Christmas with her and it will be one we will never forget.”
Garcia added that, depending on how advanced the person is, it might not matter so much what the date is, either. “My mom had no clue what day it was,” she said.
Get educated about dementia and Alzheimer’s
Even though more than 6.5 million Americans are living with Alzheimer’s Disease, according to The Alzheimer’s Association, many people who love someone with dementia don’t always take time to understand the disease and its progression.
Education about what the disease does often helps long-distance family understand what changes they might see from a loved one with dementia. Informational resources for adults and children are widely available, like a holiday-centric guide from The Alzheimer’s Association and a Being Patient Q&A video featuring leading caregiver Teepa Snow.