If you are caring for someone with Alzheimer's disease or another form of dementia, you may find it to be one of the most challenging experiences of your life. Last month, we talked about the home adaptations that family caregivers can make when caring for any aging family member. This month, we'll shine a light on simple home solutions that can help you better care for a family member with dementia.
John, a 60-year old Brooklyn resident, cares for his Uncle Karl, who was diagnosed with Alzheimer's disease five years ago. Karl moved in with his nephew last year, and receives help from a part-time home health aide while John is at work. Though aware that his condition is deteriorating, Karl remains adamant that he be allowed to do things for himself. Last year, recognizing that John was beginning to buckle under caregiver stress, Karl's doctor prescribed several home care visits with an occupational therapist from the Visiting Nurse Service of New York to help John modify Karl's environment for the challenges of dementia caregiving.
On the first home visit, Jennifer E. Anderson, MOT, OTR/L, explained to John that those with dementia often lack the psychological control to keep themselves safe. Judgment about whether or not a situation is dangerous can be very faulty, placing them at higher risk for injury. Caregivers may find they need to be constantly vigilant.
Ms. Anderson explained that because dementia patients are very resistant to changes in their environment, and this resistance only increases over time, the earlier modifications can be made, the better. In preparation, she suggests incorporating changes early on that a patient cannot remove down the road. "I tell my caregivers: Because dementia patients are so resistant to change, they will do anything possible to restore their former environment. If an adaptation is removable, I guarantee a dementia patient will try to remove it!"
Recognizing the first signs of memory loss, Ms. Anderson worked with Karl and John to suggest home changes that could be made right away and would foster independence in Karl even as his disease progresses. The first switch was to change out the 18 inch toilet for a higher one. "Because it's a standard toilet, it doesn't look like an adaptation, but it is more comfortable to use, and is not removable." Another suggestion for the bathroom was to change out all the towel bars for sturdy grab bars and use them as towel racks. According to Ms. Anderson, "You can use grab bars for towel racks, but you certainly should never use towel racks as grab bars. Switch them as soon as possible, all throughout the house," she recommends.
In the kitchen, clutter can be a particular problem--it's important to keep it to a minimum. "Pare down household items as much as possible to reduce confusion, but keep things where they always were. For example, two coffee mugs are probably enough, but make sure they're in the same place they always were."
Also, she advised John to remove the stove knobs to prevent use of the cooktop, a possible fire hazard. "If a person is still able to do some light cooking, the microwave is a safer option." Stickers or "puffy paint" can be used to mark frequently used microwave buttons (such as the one-minute button to heat up a cup of coffee). "At first Karl missed using the stove," said John, "but once we got him started heating up his own meals on his own schedule using the microwave, he was happy. I make up single serving frozen dinners ahead of time, or buy Karl's favorite frozen dinners, and he's quite comfortable. I feel he is much safer, and that de-stresses me too."
Finally, Ms. Anderson, John and Karl discussed the advantages of a home monitoring system, such as a Personal Emergency Response Service or PERS. With this easy-to-wear button, that is worn at all times, an unattended loved one can always call for help if he or she falls, feels unsafe, or has some kind of emergency. After the conversation, Karl started wearing his PERS every day.
Ms. Anderson explained to John that over time his uncle's condition is likely to worsen. But even when round-the-clock assistance is required, many dementia sufferers are able to remain safely at home with a family caregiver. While Karl has not yet reached a point where mirrors are an issue, Ms. Anderson advised that at a later date John may want to remove or cover some of the mirrors in the house. "Many late-stage dementia patients become upset by mirrors because they don't recognize themselves. Sometimes they see their reflected image and think that someone else is watching them, in the bathroom, say, which can be particularly upsetting." You can cover the mirror with a picture or curtain, or, if there is a mirrored medicine cabinet, just remove the door completely and leave open shelves.
Another common occurrence among later-stage dementia patients is wandering away from the home. In addition to constant vigilance, there are some steps a caregiver can take to reduce the urge to wander. For example, John limited the impulse for his uncle by disguising the door. He installed a floor-length curtain over the door that tempted Karl the most.
"In dealing with wandering, many caregivers try to lock family members in to keep them safe," Ms. Anderson shared. "While this is an understandable response to a scary situation, dementia patients often panic when they try to open a door and find that they've been locked in." The purpose of the curtain is simply to hide the door, which will prevent even the thought to leave the house. "Few dementia patients make the decision to wander as part of a grand plan--they just see the door, a familiar object, and go right through."
Ms. Anderson also made John and Karl aware of more advanced systems that monitor the movements of a dementia patient and alert their caregiver, wherever they are, as to what they are doing. "Apparently, there are systems that can tell me remotely what room my uncle is in, whether a door has been opened, or whether or not he has taken his medicine," John marveled. "While we all decided we are not ready for that level, or that cost, yet, we are staying open to the idea."
What was Karl's reaction? Mixed. "Honestly, the thought that my every movement would be monitored by John makes me pretty uncomfortable. But right now, I'm still lucid enough to know that there may be a time when I am a real burden to him and not safe alone. When that time comes, if this kind of system makes John sleep better, I don't think I'd be opposed."
Occupational therapists like VNSNY's Jennifer Anderson may be available for you and your family member with dementia. Ask your doctor if he or she can prescribe a home visit, or call 1-800-675-0391 for a referral.