Halloween marks the beginning of the fall and winter holidays. I will be posting more content about holidays and dementia. Here are some simple ideas and tips for CarePartners to have a safe and sane (ok, as sane as possible) holiday.
1. Play to Your Loved One’s Strengths
The best way to have an enjoyable holiday, be it Halloween or any of the upcoming ones, is to honestly consider what your loved one can handle. If the dementia is mild, and your family member has some short-term memory loss but can otherwise answer the door and give out candy, go for it. On the other hand, if there is an issue with impulsiveness (especially with the frontal-temporal dementias), this may not be a good idea. Especially if the person may want to hug or touch children who may be strangers. If the holiday involves activities or sights/sounds/smells that may trigger difficult behaviors, scale down your participation. Or skip the trick or treats altogether.
2. Change Activities and Decorations
Some people with dementia, especially those experiencing corticobasal syndromes, have difficulty with understanding what they are seeing and can also have balance problems. These issues should be considered as you think about traditional activities.
Carving a pumpkin? Maybe not. Painting a pumpkin? Better idea. Also, some stores have pumpkin push decorating kits, where you stick heads and feet or other decorations into the pumpkin…think “Mr. Potato Head” but for pumpkins. Amazon has some cool products that produce neat pumpkin decorations but without a knife. This is also a good idea if Halloween tends to be on the warmer side or if your area has wildlife that may munch on the pumpkins. We had a big problem with skunks feasting on our carved pumpkins when we lived in central Pennsylvania….and a bigger problem when the family dog interacted with said skunks!
Your choice around decorations may also need some tweaking. People tend to avoid decorations that may serve as a trip/fall hazard, but there are other decorations that are not a good idea. You may want to avoid the shrieking welcome mat or gnarly skeletal hand-in-the-candy bowl; these items can create an anxiety attack that morphs into a full-blown behavioral situation. Changing light (from day light to twilight) can cause regular house-hold items to be mistaken for scary monsters or people hiding in the shadows; a creepy zombie or witch decoration may be even quicker to be mis-perceived.
3. Candy and Over-eating
Some individuals with dementia, especially frontal-temporal dementia, have difficulty with something called hyperorality: they cannot stop eating, especially sweets. This is from the “brakes” of the brain no longer working. If you are tempted to purchase a large bag of Halloween candy from a big-box store, reconsider. Money saved is not worth the fallout when the person with dementia consumes the entire bag in one sitting. Every year at this time, I receive messages in the patient portal involving a person with dementia consuming 5 pounds of M&Ms in about an hour…pretty impressive, especially as the candies were in those little snack-size bags. If your loved one has that same focus on candy and sweets, perhaps give out non-food items to the Trick-or-Treaters (pencil erasers, pens, pencils–stuff you can find at the dollar store).
4. Fall Festivals and Parties
To attend or not to attend? Depends on the person’s personality, extent of forgetfulness, and tolerance for the anticipated activity level. Some fall festivals are outside and spread out, so there is less noise and overload. Other festivals and parties can be high-volume affairs with groups of shrieking, sugar-fueled munchkins running around. People with dementia who were more on the extroverted side pre-illness may find these activities very enjoyable and even be the life of the party themselves. Others may want to leave about 5 minutes after arriving.
If you are not sure about the reaction, go to the activity but have a plan in place. Be ready to turn around and go home if the situation is over-whelming. Let the hosts know in advance that you want to give your loved one the opportunity to participate, but if he or she becomes overwhelmed, you will make a speedy exit.
For those of you having/sponsoring the festivals and parties, you can help make these events a little more dementia-friendly. If possible, have a table and some chairs away from the main hub of activity. Welcome the person with dementia and the care partner by introducing yourself. Many people who are aware of their “forgets” may avoid these situations because they don’t want to embarrass themselves by not knowing names. Help out the care partner by offering to get them some food and drink, or offer to sit with their family member while they mingle a bit. Many times, persons with dementia shadow the care partner because the care partner is their life line…they feel safe with that person. This can creates stress for the care partner who feels like he or she can never have a moment alone (because they can’t).
I hope this post is helpful. I’m also interested in other folks’ experiences and suggestions as well.
And the picture…That is Sara and her pony, Legally Blonde (aka Blondie) from Halloween 2012 in Oak Mountain State Park. Sara dressed up as a princess and Blondie was dressed up as a unicorn. If you look in the left hand corner, you will see a darker horse covered in spider webs. That was my horse, May, a study in patience. May passed away July, 2015 at the age of 28.
While blogs like this are helpful, sometimes caregivers need a little more. Click here for information on upcoming webinars and personalized dementia coaching.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.