Family gatherings this time of year can be joyful occasions: seeing relatives that come home only for the holidays, gathering together to celebrate, visit and catch up on the year’s happenings. For those with an Alzheimer’s or dementia patient, those gatherings can bring a series of challenges, from coping with their loved one’s illness to sorting through well-meaning relatives’ advice on how best to care for someone they see once a year.
“This time of year always, we always have an increase in phone calls about how to deal with the holidays,” said Nancy Dezan, education manager for the Alzheimer’s Association National Capital Area Chapter. The Alzheimer’s Association, in conjunction with Vinson Hall in McLean, has hosted three sessions of a four-part series titled “Home for the Holidays” to discuss the complications of the holiday season for Alzheimer’s patients and their families.
When relatives come into town who don’t see the patient on a regular basis, they may be able to point out changes in that person’s personality that someone who sees them on a regular basis cannot, she said, which makes them incredibly helpful.
“With Alzheimer’s, about every six months a person can see changes in a person’s personality,” she said. “Out-of-town visitors are good for noticing changes.”
However, the Alzheimer’s patient may not recognize the visitors, causing all parties involved to become a little anxious.
“Always introduce people who come into the room to the person with Alzheimer’s,” Dezan said. “The patient needs to have a sense of what’s going on, and even the smallest things like decorations can be distracting.”
She also stressed the importance of keeping the patient’s life as normal and routine as possible, especially during the holidays, to allow the person to maintain a feeling of control and routine.
“A person with Alzheimer’s would do well to eat the same food every day and wear the same clothes every day because it gives them a sense of control. Being forced into new things is exhausting for them,” she said.
Also, it is important to watch for signs of agitation in Alzheimer’s patients and try to determine what is causing the person to get upset.
“When you go out for holiday activities, and I encourage you do to that because there will come a time when (the patient) won’t want to go anywhere, know that when they say they want to go home, you need to leave,” she said.
Little things, like sitting at a dinner table surrounded by loved ones, can become big problems for the patient, because their brains don’t allow things to process as quickly as that of a healthy person.
“PEOPLE IN THE EARLY STAGES of the disease complain that they have difficulty following conversations. When they’ve made up their mind about what they want to contribute to the conversation, the topic’s already been changed, which is frustrating for them,” she said. Limiting the number of people gathered around a patient at one time is a way to help ease that frustration.
“I would say that about 10 people is the largest group a patient is usually comfortable with. They can focus on that,” she said.
Families are often faced with whether to bring their loved one out of their health-care facility for a gathering or to bring the family to their room.
“A lot of people are afraid to bring their patient home because they’re afraid the person won’t want to go back,” she said, adding that that fear is not a valid one in most cases. “If you have someone who’s frail, it might be more work than it’s worth to bring the person home. But if the patient is asking to go somewhere, that’s a good idea to take them.”
Inevitably, the family will need to decide whether it’s best to keep their loved one at home or place him in some sort of assisted-living situation. Unfortunately, many families are only all gathered together during the holidays, which can add more stress to an already sensitive situation.
“Out-of-town family members can try to give caregivers advice, and they mean well, but they’re not the ones who have to take care of the patient on a day-to-day basis,” she said. She recommended a family call in a care manager or social worker to help the family, as a whole, decide what’s best for their loved one, taking all concerns into consideration but offering an unbiased opinion.
“I think one of the biggest problems that occurs is that the person with Alzheimer’s doesn’t see the changes everyone else sees,” said Judy Ratliff, a licensed clinical social worker, who spoke at the session. “ The Alzheimer’s patient, if they feel unable to help themselves, may want their family members to provide everything. They don’t want outside help.”
Ratliff said the role of caregiver is “usually given to the child who’s always been the responsible one, who always does everything for everyone else.”
“Sometimes the person who lives the farthest away will mandate that mom or dad stays home, but they’re not the one caring for their parents,” she said. “There is always someone in every family who feels guiltier than the rest and feels it is their obligation to become a stay-at-home caregiver.”
It’s important that families address an outsider, again, a care manager or social worker, to discuss the best option for their loved one with Alzheimer’s, she said.
The importance of the holiday season can sometimes overwhelm the caregiver, who may feel obligated to add some holiday tasks to her already busy schedule.
“When this time of year rolls around, the stress level rises. Caregivers are under enough stress as it is without adding the holiday requirements to it. It’s important to remember that you need to lower your expectations for yourself,” Dezan said.
Plus, because Alzheimer’s affects people’s brains differently in each patient, some may not even be able to retain the meaning behind the holiday symbols like Christmas trees or Chanukah candles.
“REMINISCING IS IMPORTANT because it allows the person to share things they remember,” she said. “The stories they tell over and over have stayed in their memory because they’re the most important memories they have.”
Rear Adm. Donald Guter of Vinson Hall said this year’s series is the first of what he hopes will be many collaborations with the Alzheimer’s Association.
“We started working with them when we opened The Sylvestry in early 2003, but this is the first series we’ve put together,” he said.
“One of the hardest things a family ever has to decide is when to put a loved one in a continuing-care facility,” he said. “When people decide to go in for themselves, we say ‘through the front door,’ they decide on their own, and moving from that environment to an assisted-living situation, it’s an easier step.”
When a family member has to make that decision, it’s much more difficult for all involved.
“The person may feel they’re doing their loved one a disservice, but it’s actually helping them out. I can’t tell you how many people talk to me about how difficult it is to make that decision, but we try to remind them they’re not alone,” Guter said.
Vinson Hall offers a service not found in many assisted-living facilities: Four rooms are kept open in the building for out-of-town visitors to allow them a chance to visit their loved one.
“Families can stay up to two weeks in these rooms for a small fee,” he said. “We think it’s a little something extra people enjoy, and it makes it easier for the family to visit their loved one while not feeling obligated to sit at their side for hours on end.”
Guter said he hopes the series will be held again next year, but he is open to the idea of having several talks during the year to help families cope with Alzheimer’s disease