Families living with Alzheimer's learn patience trumps tradition during holidays

For the ever-growing Johnson family, holiday traditions typically involve traveling to southeast Michigan to gather at parents Ken and Barb’s home to celebrate with a large meal and conversation. For Ken, who is one of millions of Americans living with Alzheimer’s disease or another form of cognitive impairment, the tradition provides him with more than just the comfort of celebrating in his own home.

“One of the things we tried in the past is to have holidays here because we felt we had more control over it,” Barb, Ken’s wife of nearly 29 years, told FoxNews.com. “If Ken was overwhelmed by how many people there were or the noise level, he could excuse himself and go into our bedroom, shut the door and de-stress.”

But this year, the Johnsons will travel to one of their five children’s homes for Thanksgiving, which means Barb, 70, and Ken, 76, will have to adapt; a task they’ve grown accustomed to since Ken’s 2011 mild cognitive impairment (MCI) diagnosis. Patients with MCI experience memory problems greater than normally expected with aging but do not show other symptoms of dementia, according to the Alzheimer’s Association. Patients are more likely to develop Alzheimer’s disease or other dementias than people without MCI, but the condition does not always lead to dementia. The family recalled the moment they know their patriarch wasn’t just experiencing age-related issues— when he couldn’t remember one of their 10 grandchildren’s names.

One of the first steps the Johnsons took after Ken’s diagnosis was to tell their children, so that all family members understood and were prepared. Initially, only two were able to recognize his symptoms as something more than age-related memory loss, while it took more one-on-one interactions for the other three siblings to accept the news.

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“We’re going to my daughter’s for Thanksgiving and my son’s for Christmas,” Barb said. “We’re at the point now where that’s fine because they know what’s going on. If Dad goes into another room, you know why.”

The couple is actively involved with the Alzheimer’s Association Early-Stage Advisory Group, and regularly travels for speaking engagements to share their experiences and offer tips to other families dealing with an Alzheimer’s or dementia diagnosis. Through speaking with the Johnsons and other families living with the disease, the Association has formulated a tip sheet to help make the holidays less stressful for the patient, caregiver and loved ones.

One of the suggestions is to do a variation of a holiday tradition and to consider breaking large gatherings up into smaller visits. For the Johnsons, this meant altering their traditional sit-down dinner with more than 30 people to a buffet-style meal, which also made it easier for Ken to engage in one-on-one conversations. Before receiving his diagnosis, Barb and Ken believed he was having an age-related hearing issue because he couldn’t carry on a conversation in a large group setting.

“You could be sitting right across the table from me talking to me, but if there is another couple having another conversation, I wouldn’t be able to understand,” he said.

The confusion between deciphering age-related symptoms and Alzheimer’s or dementia is common in many families, Monica Moreno, director of early-stage initiatives for the Alzheimer’s Association, told FoxNews.com. During the holidays, the Association typically sees an uptake in the number of calls to its 24/7 helpline from concerned family members who suspect a relative may be suffering from early symptoms of Alzheimer’s or dementia.

“The holidays are really a time for families to come together and see one another and celebrate,” Moreno said. “During that time you may notice some changes happening in a family member and it causes concern.”

The call center can help family members decipher between the symptoms and offers tips on how to have the conversation with the individual about seeing a doctor. The Association also works to spread awareness of the disease and the benefits that can come from early detection and diagnosis. Moreno said it gives the family a chance to have difficult discussions about if and when the patient wants to participate in treatment or clinical trials as well as plan for care for when the disease progresses.

For families dealing with a new Alzheimer’s diagnosis or those who have noticed a progression in the disease, the association recommends setting realistic expectations for the holiday season. Taking an Alzheimer’s patient to an environment that’s overstimulating or overwhelming could cause them to tire quickly or become irritated and adds more stress for the caregiver.

Barb has scaled down on the amount of Christmas decorations she uses around the house, which not only helped to cut down on Ken’s stress levels but hers as well. She found that fussing over the decorations was taking time away from her doing other things, which was adding to an already high-energy schedule that can drain Ken’s energy.

“We have to know our time limits,” Barb said. “It’s important to know as the caregiver, and to be fine-tuned into Ken and seeing when he becomes anxious. One of the things we’ve learned is that the holidays are still a very important part of our lives, we just have to figure out how to do it differently.”

While their travel schedule does weigh on Ken’s energy levels and can at times affect his memory, the Johnsons are adamant on staying engaged with their community. They see friends an average of three times a week and are sure to let them know ahead of time that they may have to leave early depending on how Ken is feeling. They also have taken extra measures within the household to help keep Ken’s memory strong.

“This year, maybe because of the increased stress, there’s been a bit of a decline,” Ken said. “We’ve made a lot of adjustments in our life as far as helping things with memory -- we’ve got Post-Its all over the house and note pads; I carry a spiral book with me.”

For Barb, the hardest part of Ken’s diagnosis doesn’t have to do with altering holiday plans, it’s the change she has seen in Ken’s personality. While he wakes up some days as the sweet, generous and respectful man she met nearly 30 years ago, there are others in which he’s nearly the complete opposite. Ken is also frustrated by the changes, and said he has done a lot of apologizing lately for his actions. He tries to shake his surly mood swings by listening to music or practicing mind-over-matter thinking techniques.

The Johnsons want others to know that despite the challenges that come with an Alzheimer’s or dementia diagnosis, it doesn’t have to be the end of the road for an individual. Barb wants caregivers to recognize that there are great benefits in accepting help for both the patient and the caregiver, and Ken urges others to understand the importance of staying engaged with friends and family.

“They can still have a life, it isn’t an end-all when you just go home and wait for something bad to happen,” Ken said. “Be engaged, it makes life easier.”