Two couples are seated at a table in a nice restaurant. The waiter comes to take their drink orders. “I will have water,” Jill says. The waiter takes note. “I will have iced tea,” Karen says. The waiter takes note. “I will have the lasagna,” Brian says cheerfully. The waiter frowns: “Sir, I’m taking drink orders only.” Confused and embarrassed, Brian is now unable to select a drink. Brian is in the beginning stages of dementia. Jill, his wife, steps in and orders iced tea for him. Everyone is upset.
This kind of situation can happen every time a person with dementia is out in public. Dining, shopping, visiting a museum or the local coffee shop may be some of the activities people with dementia enjoy doing and families and friends wish to accompany them. However, dementia often causes people to skip social conventions, misunderstand instructions or behave in spontaneous ways, eliciting reactions including surprise, contempt or even disgust. Depending on the reaction, a happy get-together can turn gloomy and distressing on a dime.
Many families stop going out in public all together, for fear of embarrassment or rejection. They feel the need to protect their loved ones with dementia from the criticism of strangers, who may not know or may not understand dementia behaviors. Families may find unbearable the anxiety of being in a social setting, not knowing which dementia-related behavior will show up next, and what unpleasant reaction will follow. They give up on this part of their social lives, isolating themselves and further withdrawing into a small world dominated by dementia.
Being able to enjoy social settings is a valuable way of staying connected, getting much needed support and reducing caregiving stress. It could also be a big part of someone’s life prior to dementia, and maintaining social activities is an important source of self respect and contentment. Thus, some caregivers encounter creative ways of promoting quality interactions in social outings and minimizing anxiety.
This is the case of Santa Barbara resident Susan Stewart, who cares for her dad, Bill. Being social, frequenting restaurants and going out with friends has always been a great source of enjoyment for Bill. Now that he is living with Alzheimer’s disease, which causes dementia and difficulties navigating social conventions, Susan is doing all she can to make sure her dad can go out with her and still have a good time.
One of the first things Susan did was identify businesses willing to accommodate the unique needs of Alzheimer’s patients. She highlights the Mesa Café, where server Ventura immediately brings hot chocolate to Bill as soon as he spots him coming through the door. They always get a warm welcome at the Arlington Tavern, another favorite spot for dinner, where smiling waiters assure Bill, when he protests at the price of his meal, “Sir, it’s the best mac and cheese you’ve ever had!” They have also found a friendly environment at the Daily Grind, on upper De la Vina Street, where the staff makes a point in greeting Bill with enthusiasm, calling him by his preferred nickname, “The Commander,” and even naming him customer of the week.
“It’s just nice the way they treat my dad,” Susan says. “Their attention makes him feel good about being there, and it is really not that hard. Alzheimer’s should not keep him from enjoying what he always liked to do. It is the way it is, and there is nothing you can do except respect the person.
“Besides, who cares if he orders hot chocolate 10 times? Who cares?”
Frequenting places that are accepting of the peculiar behaviors of dementia patients and provide a safe environment has been a big source of comfort and joy for the Stewarts.
Peter Gruber, the Daily Grind’s manager, appreciates the opportunity of accommodating the needs of Alzheimer’s patients.
“My own grandmother had dementia,” he said, “so I understand what it feels like. And it is not like we are giving them special treatment. They are just nice people and the staff really enjoys having them around.”
Another place where Susan feels safe is Trader Joe’s: “There is a man there who always greets dad warmly. He likes going to TJ’s. He feels good carrying the bags, helping with the shopping. Life feels normal again.”
In addition to frequenting friendly places, Susan has found some great strategies to optimize the family outings. Here are some of the things she suggests:
» Pull the menu online ahead of time. Knowing what you are going to order in advance reduces anxiety.
» If mobility is an issue, request a table close to the door. Call ahead, and don’t let them take you to a table all the way in the back.
» Reorganize the table. Feel free to remove sugar bowls, jellies, nick-knacks or anything that could be distracting from the table. Make the table setting look as close as it is at home.
» Let them order out of order. It is OK to have dessert first.
» Pay the bill separately. They may be still expecting the prices to be as they were in the 1950s. It’s best to avoid sticker shock.
» Educate staff and waiters. Their understanding and disposition will have a big impact on the success of the outing. Let them know that your companion has dementia, and they may be less likely to become impatient when repeatedly told the same stories.
» Bring a patience card. The Alzheimer’s Association has free “patience cards” that can be used to discreetly inform a staff member or a fellow customer about dementia. They may help in an embarrassing situation and raise awareness to the disease.
Resourceful caregivers like Susan are all around us, dedicating themselves to keep the quality of life and provide dignity to their loved ones as they go through the devastating path of living with a progressive dementia. Their days would be much easier if more business and organizations, such as the Daily Grind, Arlington Tavern, Trader Joe’s and Mesa Cafe, where more aware and welcoming of dementia patients.
As the number of dementia patients continues to grow, it is important that more businesses get help in developing dementia-aware and responsive customer service. Many communities across the country are now organizing to promote a dementia-friendly environment. In Santa Barbara, Friendship Center, the Alzheimer’s Association and other organizations are gathering information and support for a plan of our own to raise awareness and support for caregivers and families touched by dementia and promote meaningful participation in community life. Look for more to come on this!
For more information, contact Heidi Holly at the Friendship Center at 805.969.0859.
— Luciana Cramer is a care specialist for the Alzheimer’s Association-California Central Chapter.