When dementia starts changing a person’s life in often scary ways, avoiding change and maintaining the familiar becomes critical. Once variety and change may have been fun, exciting and enlightening. Now they move the person away from the known where there is still a sense of control. As the ability to adapt and learn diminishes, so does any appreciation of change. It is the enemy, stealing away feelings of comfort and security. Thus change and variety become stressors and keeping everything as much the same as possible adds feelings of safety and comfort—the opposite of stress.
As with other symptoms, this need for sameness may start well before any cognitive issues become noticeable. Someone who has loved to travel may resist taking a trip, especially if it is to a strange place. A person may have loved to go to the theater but now prefers to watch a video at home. The every-changing crowds that used to add to the fun of theater-going now cause agitation and anxiety.
If you and your loved one are still early in this journey, a certain amount of variety may still be tolerable, even enjoyable. Start now to prepare for when it isn’t. Now is the time do some of the things that won’t be enjoyable later—take that trip you’ve been talking about for years or buy season tickets to the theater. It is also the time to set up routines and rituals that will provide your loved one familiarity later when change is stressful. And finally, it is the time to look ahead and see what else you can do to ensure less change in the future.
Familiarity can be expressed in the way we act and in our relationship to the places and objects around us.
Familiar actions. Routines and rituals are comfortable for us all. Most churches have a set ritual of praying, singing, etc. that helps members feel at home no matter what city they may be in. Mothers know the value of bedtime routines and how they can prevent resistance. A familiar set of actions carries a person along to an expected destination with little effort. Doing something the same way every time can be boring for the person who thrives on change. However, for the PwLBD, rituals and set routines have a soothing, almost mesmerizing quality that decreases stress and fosters comfort.
Developing set routines for bedtime, eating, traveling and the like builds in the comfort and safety of familiarity. If you know exactly what is going to happen, it is easier to take that next step—and the next and the next. Routines for activities like eating out will greatly increase your loved one’s ability to do so with enjoyment. For instance, you could start going out to eat with a friend at the same time and place every week.
Familiar places. Home is of course our most familiar place. Your loved one will be much more comfortable at home than anywhere else. Expand that sense of comfort by building routines of outings such as visits to favorite restaurants and stores. For instance, take the same route in the car, ask for the same table at the restaurant, go through the aisles in the same sequence, and so on. While this may seem boring now, it builds routines that makes it easier to do these things later.
Familiar placement. Find the best placement plan for furniture and other objects and stick with it. When your loved one can count on the things being in the same place day after day, this gives them a sense of control. Move a chair to a different position and this fragile feeling of control is replaced with stress.
Familiar objects. You can make less familiar places seem more inviting by adding personal furniture, photos and other well-loved items. This works well when a move to assisted living is necessary. It also works well when traveling when a favorite blanket can add a touch of sameness that may make the difference between comfort and anxiety.
Buy the same clothes. New clothes used to be fun and even exciting. Now they are just add confusion and take away that feeling of being in control. If your loved one needs new underwear or a new jacket, buy something similar to what they’ve been wearing. Don’t even change the color. The comfort of familiarity is much more important than style—or even functionality, in most cases. When you do have to make changes, don’t make any more than necessary. For instance, replacing the lace-up shoes that the Lewy partner has worn for years with Velcro-fastened shoes can help with independence. But try not to change the color or style.
A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Buy it from Amazon through The LBD Book Corner on LBDtools.com and help to support our work.