By Kim Hilsenbeck

Family gatherings are a big part of holiday celebrations for many families. Multi-generational dinners and parties happen all across the globe.

But for a family member with dementia, and for the other members of that person’s family, such events can be stressful.

For advice, we turned to Professor Chris Johnson, head of the newly created masters program in Dementia and Aging Studies at Texas State University. Johnson previously spent 25 years as Director of Gerontology at the University of Louisiana, Monroe. He also taught at the University of Sterling in Scotland for 18 months while his wife, Roxann, completed her doctorate.

Johnson said there are more than 70 forms of dementia. For this story, he defined it as, “A condition in which a person loses the ability to think, remember and reason sufficient enough to be unable to carry out everyday activities.”

In many ways, having dementia shifts the way a person experiences the world around him or her. Johnson advocates creating a culture shift in the perspective about dementia and aging in general.

“Being elderly, or even just older, is stigmatized in our culture,” he said, citing humorous greeting cards about being old and forgetful.

“We will do anything for a disabled child, but that’s not part of our culture for an older person,” he said. “People need to really be aware of how persons who have dementia are stigmatized and marginalized in society.”

Johnson had some recommendations for helping a family member with dementia this holiday season.

Five things to consider

1. Familiarize others with situation.

“The holidays are full of emotions,” he said. “Let guests know what to expect before they arrive, prepare them for changes in behavior and memory [of the afflicted person].”

2. Adjust expectations and plans for holidays; be realistic and honest.

“Caregiver stress causes more bad cholesterol than anything you eat,” Johnson said. “Take some time off, replace a caregiver for a while, let others help.”

He also suggested making changes that accommodate the person with dementia’s schedule.

“Some people with dementia get what’s called ‘Sundown syndrome’ — they get agitated when sun sets,” he said. “Try have dinner at an earlier time of day.”

3. Involve the person; build on past traditions and memories.

“People with dementia are time traveling,” according to Johnson.

“It’s a trip back in time — they are revisiting earlier stages of their life,” he said. “Join them in that trip. Don’t impose your reality on them, validate their reality. Go through their important history.”

He suggested continuing long-standing family traditions, singing songs and looking at old photos. He also said it’s important to invite the family member to join in holidays preparations to the extent they are able and is safe.

Johnson also recommended taking breaks and planning for down time.

4. Adapt gift giving; offer gifts that are safe and useful, not dangerous.

Ideas included an ID bracelet (Safe Return), comfortable clothing, audiotapes, photo albums with pictures of him or her as a child, not of her own children and grandchildren.

“All disabilities have an element of sadness, but when you empower someone with dementia it can be pleasant. Tap their strengths and abilities.”

He added that it’s appropriate to offer gifts for caregivers, too, such as respite care and house cleaning.

5. If the person isn’t able to be with the family at home, join them in activities at their care facility; make adjustments.

Gloria Parra, the RN Administrator from New Haven Assisted Living in Kyle, offered a few tips of her own for the holidays.

“Remember that whenever you see radical behavior [from a person with dementia] don’t take it personally,” she said.

Parra also suggested creating a memory book.

“They are going to remember the past, not the things that happened more recently,” she said. “Photos and mementos from when they were younger may help relieve anxiety.”

Another piece of advice is to ask yes or no questions, rather than open-ended. For example, ask, ‘Did you have a good day?’ instead of ‘How was your day?’

“That way, the person doesn’t feel frustrated that they can’t put together a sentence,” she said.

Additional tips and ideas from the Alzheimer’s Association Capital of Texas Chapter:

Set clear expectations

It is very important for family members to be on the same page going into a visit with someone whose cognitive abilities are in decline.  Here are some tips for preparing family members for the visit:

• If you have out of town family members, send out an email or letter bringing them up to speed on your loved one’s condition, and familiarizing them with behaviors or changes they might observe.   Remind family members that a loved one with dementia may be losing the ability to regulate emotions or impulses, and not to take their actions personally.
• Calibrate their expectations for the visit, and get them on board with sharing some of the responsibilities for holiday preparations.  For example, instead of overburdening yourself with a labor-intensive holiday feast that may over-stimulate your loved one, work together with your family to plan a potluck-style meal earlier in the day when your loved one is at their best. 
• Send suggestions for gifts that are appropriate for your loved one’s ability level.  For instance, your loved one may no longer enjoy reading dense novels, but would appreciate a book of old photos and other mementos.
• During stressful times, it is essential to maintaining a calm environment and consistent routine for the person with dementia.  It may be best for family members not to all stay the night in one house, but rather to drop by for meals and visits.

Modify activities to involve your elderly loved one

It is easy for someone with cognitive difficulty, hearing loss, or mobility problems to feel left out around the holidays, but there are a number of ways to adapt your plans to keep them involved. 

• Make a point to involve them in preparations; encourage them to help place indoor decorations, prepare food, or wrap packages to the extent they’re able. 
• Engage them in holiday activities that are manageable and meaningful for the person, such as singing songs, watching a favorite holiday movie, wrapping gifts, or eating traditional foods. 
• We all feel the urge to reflect near the end of the year.  Reminiscing about fond family memories can be a wonderful activity for the person with dementia, and you may learn a lot from them!
• Remember to plan time for breaks in holiday activity in keeping with their normal routine, so the person can have time to recover from the noise and crowds.

Remember, nobody’s perfect.  Be kind to yourself this time of year.  If you are a caregiver or relative of someone with dementia, you can call the Alzheimer’s Association’s 24 Helpline (1-800-272-3900) to get more advice on how to prepare for the holidays.  The Capital of Texas Chapter also hosts a variety of educational events, including a comprehensive class on the fundamentals of the disease every second Tuesday in Austin.  For more information, visit www.alz.org/texascapital.

If you’d like more information about this topic, please call Amelia Frank at 512-241-0420, ext  11 or e-mail her at afrank@txalz.org.You may also visit www.alz.org.