Can you visit Disney World successfully with someone who has early onset Alzheimers or memory impairment?
To research that question and to get some tips for managing successfully with Alzheimers at Disney World, we spoke to Martha Davis, BSW. Martha is the Director of Support Services for SHARE the CARE™ (www.helpforcaregivers.org). In addition to sharing her insights, she helped us distribute a questionnaire to care givers.
Martha’s organization provides adult day care and respite care for those with Alzheimer’s and memory impairment. See below for more information on their day care services (please remember that we’re unable to endorse any services, and we’re sharing the information for your research purposes only).
We asked their caregivers if a person with early onset Alzheimers or memory impairment could enjoy Disney. The feedback we got was across the board with those who did wonderfully and those who did badly at Disney, but very little in between. Here are some sample caretaker responses to this question:
“In my opinion, no – it would be stressful on the caregiver with the crowds. Fearful of losing them… too stimulating, no place to rest.”
“Yes, my mom has moments of great enjoyment.”
“It’s very difficult to take them somewhere. It’s like raising a child again.”
Whether or not a person with Alzheimers can successfully visit Disney seems to depend on the person, the stage of illness and its manifestations, and their personality. Some felt that with supervision it was possible to have a very positive experience.
Others felt the opposite and have chosen not to bring their loved one to Disney for various reasons. Here are some of those reasons:
- One person noted that her mom gets aggressive and will “get into people’s faces.”
- Several people noted that the noise and crowds can cause confusion.
- Since those with Alzheimers tend to have shorter attention spans and patience levels, lines and crowds could cause frustration.
Who might be a good candidate to go to Disney World?
Martha Davis mentioned that most of those who would be good candidates for visiting Disney are at the very beginning stages of illness. They are the ones who are so functional that most people would not know that there’s an issue. She noted that those with Alzheimers have a lot of problems handling any trip, including Disney. This is because the change, people and constant chaos (in their mind it feels chaotic) can agitate them. However, she feels that it ultimately depends on the person, since everyone responds differently to different situations.
Suggestions from Caregivers: How to manage with Alzheimers while at Disney World
If you decide to take your loved one to Disney, the following are some suggestions we got from Martha along with the care givers who participated in our survey.
- Give them a name tag. In case the memory impaired person wanders, give them a name tag identifying that they have Alzheimers or memory impairment, and have contact information on the tag. Bring along a cell phone in case Disney staff needs to contact you. Consider using a GPS tracking device.
- Take a photo daily. Use your cell phone to take a picture of your loved one at the start of every day. If they wander away, you’ll have a picture along with a good description of their clothing.
- Avoid fatigue. Since they tire easily, be sure not to overdo it. Keep the visit as short as necessary and make time for rest. Go back to the hotel room before they get overtired.
- Consider using a wheelchair. This is another tactic to help them avoid fatigue and wandering. We recommend a manual wheelchair. An ECV (electric convenience vehicle or mobility scooter) is not a good idea at Disney for someone with Alzheimers. Navigating it in the midst of the Disney park crowds takes coordination, alertness, concentration and quick reflexes. ECVs are fast, and you could easily become separated. They’re also heavy and could really hurt someone.
- Patience & letting them lead. One caretaker advises that you “Take it slow, and let them lead. Follow them through their day and have lots of patience. They have a lot to say.”
- Attractions that trigger memories. One caregiver suggested visiting attractions that would remind the memory impaired person of their younger years. This can be soothing and positive.
- Avoid crowds as much as possible. Almost all caregivers mentioned that their loved one was uncomfortable with crowds and waiting in lines. Get a DAS (Disability Access Service Card) to minimize waiting in lines and exposure to crowds.
- Try to visit during low crowd periods. There are some who say that Disney no longer has low crowd periods, but there are definitely peak crowd periods. To identify trends so that you can schedule your visits during potentially slower times, you can visit sites that create crowd projection calendars like easywdw.com, which is free, and touringplans.com which has a small fee to join the site. Avoid peak crowd seasons like the plague, and if you must travel during crowded times, consider hiring a sitter. You can also bring your loved one to a daycare for the day such as SHARE the CARE™, rather than to the parks.
- Avoid rides that are too intense. This can include high intensity, spinning or dark rides, roller coasters, highly stimulating rides and rides with flashing lights. Avoid attractions that are very loud or startling. All of these can be disorienting and stressful to your loved one.
- Avoid overheating, which can exasperate symptoms. Try to visit when the weather is cooler, and if it’s warm, take plenty of breaks in air conditioned environments. Keep them hydrated.
More suggestions from Martha for those with Alzheimers or Memory Impairment
Martha suggests the following:
— Watch their verbal and non-verbal signs such as you would with children. For example, if a child wiggles, they may need to go to the bathroom. Then try to meet their needs as much as possible. She also suggests keeping them on the same schedule as they are on at home, including sleep and meal times.
— Bring familiar items and things that are calming. This can include things like an ipod with their favorite music, or a portable DVD player with their favorite movies.
— Prepare daily itineraries and hand them a page every day. As you go through the day, discuss what’s coming next. Involve them as much as possible and try not to talk over them or about them without including them. Have patience. Even if you need to repeat yourself multiple times, do so. Depending upon the individual and their condition, Disney is so unusual that the change can cause disorientation, and can trigger symptoms and anxiety. Be sensitive to that.
— Avoid separation in restrooms. One thing to keep in mind while at Disney, especially in the parks, is that some restrooms have multiple exits. If you’re with someone who could wander, stay with them inside the restroom. Sometimes people become separated from their party because without realizing it, they leave the restroom by an alternate exit.
Consider Daycare Centers
Depending on your loved one, you may want to consider using Daycare services for part or all of the trip. It may even be a good solution if you find your loved one isn’t adjusting well to the parks.
Martha discussed SHARE the CARE™ adult day care. It offers a place where you can drop off your loved one for the day. It’s a structured environment with activities, socialization, exercise, classes, lunch and a snack. Activities vary and include having the paper read out loud, sing-alongs, and arts and crafts, and rest time for those who want it.
SHARE the CARE™ accepts those who need up to a two person assist. People with incontinence are permitted, and those who need assistance to the rest room are welcome. They’re in a secure area so they can’t wander out. The closest SHARE the CARE™ facility to Disney at this writing is in Windemere, though there are five facilities in the area. It costs approximately $60 a day. They work mostly with those who are 60 years or older, but they’ll accept those who are younger. They do have some mentally challenged clients. Martha suggests you call in advance to see if your loved one qualifies. Medical forms must be filled out by your doctor, so be sure to call in advance of your trip to make arrangements. Call (407) 423-5311.
By the way, we are not associated with SHARE the CARE™, and they are not paying for advertising. Again, we’re not endorsing them, but sharing information with you.
Do you have any questions or tips to share? Please post in the comment section below.
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