By Thomas Goldsmith
Success during holidays with a person with dementia depends on what people around her think of as “success.”
That is, seasonal occasions are unlikely to work out well for those who insist on doing things as they’ve always been done, for good or ill, experts in the field say. Ultimately, the best holiday occasions turn out to be those that are focused on the desires and demands of the person with dementia, or neurocognitive disorder.
“Just the presence of being with that person becomes the biggest gift,” said Dee Dee Harris, director of support and family services at the nonprofit Dementia Alliance of North Carolina.
A family member who is up to date with the parent or other relative’s condition can make a difference by offering some expectations for out-of-town or other infrequent visitors.
“The key thing is just really thinking it through beforehand, but also being prepared to handle it if you see them getting agitated, or being kind of quiet,” Harris said.
“You’re looking for the difference,” she said. “You’re looking for things that aren’t quite right.”
People who haven’t seen an older relation in months or years can perceive a crisis, rightly or wrongly, said Teepa Snow, a Chapel Hill-based occupational therapist with 40 years of experience. Snow consults nationally and internationally about new approaches to dementia issues.
“It gets overwhelming”
“We often feel as though, ‘Yikes, we gotta do something!’” Snow said. “People dig their heels in and families crumble.”
For example, traditions like an all-out family Christmas party with dozens of guests can easily overload a person with little short-term memory, someone who likely won’t recognize long-term acquaintances.
“It just gets overwhelming,” Snow said. “It goes so poorly because there are expectations no one can meet. Instead, let’s do a few positive things.”
To lower the burden on the person with memory impairment, family members can be encouraged to visit a few at a time, rather than in the usual rowdy bunch. The pitch and execution of traditions can be modified for a smoother get-together.
“We are trying to get so much done that it’s hard for us to stop and enjoy it,” Harris said.
“If you only got half the lights on the tree, but you have time to be together — that puts the focus on being with them, on being present with them.”
Holidays can be a time for discoveries that aren’t always welcome, especially as families are not as in touch, or close by, as in the past.
“Mom is alone and she does not have the friends that we thought or the house is a mess,” Snow said. “Or we realize Dad is caring for Mom, and her mental capacity is much worse than we hear on the phone.”
People affected by neurocognitive disorders — which can include Alzheimer’s, “mini-strokes” leading to cognitive decline and dementia with Lewy Bodies — and their caregivers are prone to concealing growing problems. The same person who sounds all right in a short phone conversation can reveal drastically failing memory at first hand.
Preserving dignity
Changes in societal norms, and in lifespans, can also make for uncomfortable holidays.
“We often have mom and her adult children, when the spouse has either died or she’s divorced,” Snow said.
An older woman falling in love with a younger man, or vice versa, can result in a newly married person’s adult children having a step-parent of roughly their own ages.
“It gets really complicated at holidays if one of them has the beginnings of dementia and one has entered the relationship knowing that,” Snow said. “What was a reasonable holiday has turned into not a reasonable holiday.”
Family dynamics become strained when adult children have to show flexibility when role-switching from being cared for to providing care.
[sponsor]Letting family and friends know that they, too, will have to be flexible can be key to making a happy Hanukkah or Merry Christmas. That’s true both for the person with dementia and for the friends and relations around him.
“You cut the meat before you bring it out if that’s going to preserve dignity for that person,” Harris said. “Do the little things that make it easier. You kind of let go of the things that don’t matter.
“If they pick something up with their fingers, or they say something inappropriate, we can let people know that the biggest gift is having Grandma or Grandpa with us.”
Family disruption involving dementia during the holidays is so common that experts and nonprofits have come up with lists of pointers on how to handle these situations.
Here are some samples:
- “Celebrate holidays that are important to you. Include the person with Alzheimer’s as much as possible. 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.”
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Photo credit: Thomas Goldsmith “Prepare quiet distractions to use, such as a family photo album, if the person with Alzheimer’s becomes upset or overstimulated.” – National Institute on Aging
- “Be sensitive to the needs of the patient and the caregiver. Unless you are living with — and even if you are living daily with — a person who has dementia, you might not be aware of just how much the patient’s daily life and needs have changed. – Nataly Rubinstein, a licensed clinical social worker, in Psychology Today.
- “Honor your caregiver guests by ‘giving them a break’ if possible. Designate a familiar adult or older grandchild as ‘Grandpa’s buddy,’ thereby freeing up the caregiver to connect with family members and get lots of support and love.” – Dementia NC
- “Involve the person in holiday preparation. As the person’s abilities allow, invite him or her to help you prepare food, wrap packages, help decorate or set the table. This could be as simple as having the person measure an ingredient or hand decorations to you as you put them up.
“Be careful with decoration choices. Blinking lights may confuse or scare a person with dementia, and decorations that look like food could be mistaken as edible.” – Alzheimer’s Association
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