Like all people with dementia, PwLBD* are prone to slow thought processes and an inability to deal with extremes. They also have damaged perceptional abilities and a sensitivity to light. All of these will cause stress and that’s the kicker. The more stress, the more LBD symptoms, the more acting out, the less easy it will be to travel. On the other hand, the more comfortable anyone with dementia is with their surroundings, the fewer problems there will be.
Many people travel with mild LBD and do fine. Plan ahead, keep the stress down, and always travel with a caregiver. Jim and Annie(1) flew to Europe. Judy and Dean Jennings(2) traveled to Europe several times. Barbara and Bill Hutchinson (3) took an RV from Alaska to Florida. It can be done—if you go early enough.
If you fly, buy travel insurance and be prepared to use it. If your loved one acts out when you get on the plane, it isn’t going to get better. Get off. DO NOT travel unless your loved one feels well. It will almost assuredly make the LBD worse—and with the added stress, it may not bounce back. Stay home and take care of the problem. Then try again.
Make it the same. Taking trips in a familiar vehicle, through familiar countryside, to familiar places will be easiest. Add anything unfamiliar, and you add stress. Thus, a trip that you’ve made many times in the family car to see family will be much easier than a trip in a strange car to a strange destination. Add people the PwLBD doesn’t know well, such as a tour group, and you increase the likelihood of stress. A person who is used to flying will be able to do so comfortably longer than a person who isn’t used to flying.
4. Slow processing. If the scenery flashing by the windows of a fast moving car is confusing and scary, consider traveling at night, when there is less to see. (But the flashing lights may be just as bad.)
5. Be aware of delusions. In an effort to make sense of their confusion, the PwLBD may develop frightening delusions. Jim and Annie were driving in an area of rolling hills but Annie saw valleys and cliffs and believed Jim was driving much too close to the edge. Another time, she saw an amusement park and believed it was a huge fire. However, dementia also causes a decreased attention span. Thus, the best solution for such delusions is to leave. “Out of sight, out of mind” usually works well!
6. Avoid extremes—too hot, too cold, too tired, too excited, too….. These all cause stress.
7. Build in familiarity—sameness. Take along a favorite blanket, familiar photos, etc. to help the PwLBD feel at home. Keep a regular routine.
8. Travel during optimal times. Take advantage of LBD’s fluctuations. When is your loved one most functional during the day? This is the time to schedule your outings, or to schedule the bulk of your traveling during longer trips.
9. Plan, plan, plan. The more you plan, the fewer surprises, the less stress. Plan ways to avoid extremes and add familiarity. Plan short trips to avoid tiredness (probably no more than a few hundred miles a day). Take extra clothes for warmth and for familiarity. Take familiar routes whenever possible. Consider any emergencies you might encounter and how you will deal with them. Talk to the doctor about emergency meds to take.
10.Include your loved one in the planning. Even if they don’t remember doing it with you, they will react better to the stresses of the trip. Something in their subconscious mind does seem to remember and they will feel more control.
11. Use respite care instead. Marge wanted to attend her niece’s wedding. She asked her support group if she should take her husband, whose LBD was advanced enough that delusions and active dreams and were very common. They suggested respite care. As the LBD gets worse, the stresses are too difficult to manage and traveling can be a nightmare. Many care facilities will allow you to place your loved one with them for a few days on a space available basis. Its good business. This can be a welcome break for the caregiver too.
12. For more ideas, go to our website and read Travel Guidelines by Geri Hall. View and download
*PwLBD: person/people with LBD
(1) A Caregiver’s Guide to Lewy Body Dementia by Helen and James Whitworth View and buy
(2) Living with Lewy Body Dementia by Judy Towne Jennings View and buy
(3) Making a Difference, One Person at a Time. Read article