This post is part two of my last post, Expectations and Perspectives On Caring for Dementia Patients. Read that one if you haven’t as it informs this one.
In this post I focus on actionable items to help you care for patients or family members with dementia. In the previous post I give you perspectives as a caregiver including what to expect as the dementia progresses.
- Safe Environment
- Routines
- Reorienting
- Communication style
- Behavior management tools
- Distractions
- Resources for caregivers
- Summary
Safe Environment
Make sure the walkways are wide and clear. Remove floor rugs or other items that may cause someone to trip when their equilibrium and/or focus is waning. Keep side tables and items with corners a safe distance from the bed. Falls are a big problem for dementia patients and will often happen when they’re trying to get out of the bed.
Make sure there are no items that they may use to cause themselves harm. These can be patient-specific items. For example, most patients are fine to have shampoo in their shower. However, the patient I mentioned in my last post who was eating everything she could get her hands on could not be allowed unsupervised access to any product that could cause harm if ingested.
Overall, think imaginatively from this person’s perspective and remove any potential hazards you see around.
If you’re in a private home it’s the same story as above but you also want to make sure they’re not left unattended in the kitchen. They may light a burner on the stove or get a hold of a knife, or turn the garbage disposal on and get curious about the sound in the sink.
Make sure the car keys are hidden. They often believe they can still drive and will absolutely hop in the car and go.
You’ll want to get locks on your main doors especially. Want them to require a key to unlock from the inside as well as the outside. That way your confused loved one won’t be able to leave without you knowing. Also make sure you can open any door they lock from the other side. They can trap themselves in the bathroom, for example. If that happens, you want to have the ability to unlock it.
Having a tracking device, like an air tag, on the patient is a good idea as well. The trick will be keeping it from their attention while keeping it on their person. You can try putting it in a zipper pocket of their pants, on a belt buckle, or make it something they can wear around their neck but under their shirt. If it’s something they become fixated on, they will probably get rid of it quickly just because they don’t know what it is. Don’t just put it on them when you go outside. Get into the habit of putting it on them every day so it becomes something normal.
For more ideas on how to keep your demented loved ones safe, go here.
Eating
If you read my last post, you know eating becomes a more difficult task the further the disease progresses. Monitor folks with dementia for repeated coughing when they’re eating. That cough, if persistent when eating or drinking, suggests that the swallowing coordination has started to go – a sign of advancing dementia or Alzheimer’s.
They’re coughing because they’re accidentally inhaling food or liquid into their lungs, also known as aspirating. This will very quickly lead to aspiration pneumonia, which is the leading cause of death in dementia or Alzheimer’s patients.
If you’re not on the hospice route, consider asking your doctor to order you a swallow study. Generally, as the swallow reflexes start to go, we can make changes to their diet. We can go from regular food to focusing on easy to chew foods, then soft and bite sized, then minced and moist, pureed, then liquified.
For liquids, straws can often increase the risk of aspiration. Try sippy cups instead, or holding a lidless cup to their mouth. If they’re still coughing, you’ll want to reach out for an expert opinion. Generally for this we start thickening the liquid to help with viscosity. We go from mildly thick liquid to extremely thick liquid as they progress. The goal is to reduce the risk of aspiration.
If you’re having any behavioral difficulty with getting them to eat, try making their favorite finger foods. They may be more motivated if it’s a food they love and the finger food makes the coordination of eating a little easier. More more tips on meal time with dementia patients, check out this alzhiemers.org site.
Lastly for eating, make sure to check their mouth when they’re done eating. Often they’ll pocket food in there and could end up aspirating or choking on it later.
Routines
Routines are so important for these patients.
Try to keep them on a clear schedule. Waking up, bathing, eating, games, naps, bedtime should be as consistent as possible. Try to have those events happening near the same time every day.
Avoid giving these patients caffeine or alcohol to help keep their behavior moderate.
The routines will be a source of dependability for you as the caregiver as well. But remember, when a patient throws the routine off, it’s okay. It’s going to happen. There’s only so much you can control, so roll with it and pick up where you left off when you can.
Once again, alzhiemers.com org comes through with ideas for a day-plan for dementia patients.
Reorienting
Get in the habit of telling these patients where they are and the date and time as often as possible.
Place clocks with large numbers in various easy to see places in order to maintain orientation.
Keeping a day/night schedule is really important so open the blinds in the mornings and close them at night.
Maintaining their awareness of day and night is huge in preventing complications with delirium or sudden exacerbations of their underlying dementia.
Communication style
These patients will usually say no to most yes or no questions. I have a theory that, among other probable reasons, this is because in their head something feels off to them. Consider, for example, if someone asked you if you want to eat dinner, but in the back of your head you’re thinking, who is this person? Why do they want to feed me? You’d likely say no as well. Try to avoid yes or no questions and instead provide them with “either/or” options.
Instead of saying, “Are you ready to get out of bed?” try, “Would you like to get up and see some friends or do you want to keep laying in bed?” “Would you like water, orange juice, or both?” “Would you like to do a puzzle or watch TV?”
Don’t ask them if they want dinner. Ask them if they want the roasted chicken or the macaroni and cheese.
Behavior management tools
Redirection is a really important tool with dementia patients. If they say they don’t want something, don’t force it unless you have to for their safety. Forcing them to do anything will draw out their worst behavior. They will be intransigent and willful in an argument.
If you have the time, try redirecting them. Often just discussing with them why they don’t want whatever it is, then changing the subject to something that ingratiates you to them, and then reattempting the original goal as if you’d never discussed it before will get you success.
Again, discuss their “why,” change the subject to something you know they enjoy, and when the timing is right, reattempt your original goal.
For examples of redirection click this link to a simple google video search on redirecting dementia patients. While all those videos don’t look like high-quality cinematography, they’ll help illustrate the process and give you more tools for the job ahead.
If a patient is in a state of being where redirection is impossible either due to time constraints, the safety of themselves or other patients, or because you’re at the end of your rope, see if they have medications prescribed to help decrease agitation or anxiety.
If you find yourself in a position with a patient who you believe needs that type of medication but doesn’t have it, speak with a provider or, if you’re staff, a supervisor that can make that happen for you. (Always speak with the patient’s family for permission as well.)
It’s best to give those medications before behavior gets out of control. As you learn their triggers and start to recognize what early escalation signs look like for them, that’s the time I usually suggest family give behavioral meds to the difficult to redirect patients.
Distractions
There are a lot of great distractions and each can be patient specific.
There’s one patient I’ve come across who has a need to constantly be cleaning. He’s got it in his head that he needs to maintain the already very well maintained memory care facility where he lives. So the staff gets him rags if he needs them, or the broom and dustpan and he goes around cleaning real or imagined messes.
He feels a sense of accomplishment. If they were to refuse him the work, he would act out. The distraction is a very healthy one for him.
Other distractions include, folding laundry, playing games like really simple trivia, doing large-piece simple puzzles, or getting everyone in a circle and keeping a big balloon up in the air.
TV can be a great distraction too, but it’s a complicated one.
These patients have a tenuous grip on reality. They may implant themselves in the stories they watch. They may believe they are the characters and that they are experiencing what the characters are experiencing.
Avoid crime shows and shows that exhibit violence, suspense, or horror. You’ll want to avoid political and entertainment news like Fox or CNN as well. Essentially, avoid shows or styles where stress, suspense, and divisiveness are their bread and butter. You want to help keep these patients from getting riled up.
Great shows for these patients are task-focused shows like cooking competitions, home improvement shows, or house-selling shows.
The Hallmark Channel is usually pretty non-inflammatory. Except when the city girl decides she doesn’t want to slow down and build cabins with the rustic trust fund guy who found himself on his hero’s journey in the woods. THAT WOULD BE WILD. It would set the whole place off. (A joke.)
Classic family shows like Leave It To Beaver or The Andy Griffith Show are great. The old TGIF lineup like Full House and Family Matters are other great options as well. Consider the patient’s background and what was on TV when they were growing up. Family friendly shows from the patient’s childhood are usually able to hold a dementia patient’s attention and keep them in good spirits.
Game shows like The Price is Right or Family Fued are good for keeping attention without contributing to anxiety. They have lots of attention grabbing sounds, cheers, and excitement.
For more idea about activities, try this alzheimers.org activities page.
Resources for caregivers
There are resources and community help networks out there for family caregivers. The Caregiver Action Network is a great one. Their main focus is on helping people caring for their loved ones. I also found some good information on alz.org. (Alzhiemers.org) and linked a few of their pages above. Your state will also have resources for you. If you’re working with a home care or hospice agency, ask if they have a social worker on staff that could help direct you to local services.
Summary
To summarize: the dementia patient can be sweet and endearing, they can also be cruel, in a constant state of terror, or unpredictably violent. Your best tool as a caregiver is to go with the flow.
Maintain a routine and come in with ease and patience, prepared with the tools above.
Redirect negative behavior whenever you feel like you can. Seek the help of behavior-focused medications from those who are licensed to prescribe. Know what “as needed” meds are already available for bad behavior for each patient and try to give them before behavior becomes “an episode.”
If you’re a staff member, take good care of yourself before and after work. Get good rest and eat well. If you’re taking care of yourself, the rest of this stuff comes much easier.
If you’re a loved one giving full time care, learn your boundaries and your resources. Have a schedule for family and friends to give you breaks. And check out the Caregiver Action Network and other state resources for caregivers. Look into “respite care” for caregivers.
Again, keep yourself in a healthy state and make sure you figure out your boundaries. It’s so important you take care of yourself. Consider what the person you’re caring for would have wanted if they were themselves again. They would want only the best for you.
If you’re waiting until you’re upset to ask for help, you’re waiting too long. Adjust that boundary to a place where you can circumvent the emotional drag and keep yourself in a state where you can enjoy what you’re doing and stay well focused on the person for whom you’re caring.
Thank you for reading! Please share this site with anyone you think could benefit from it! What questions do you have? Do you have any suggestions? Or did this bring up any stories you want to share? Reach out to me through the contact page. I’d love to hear from you!
Leave a Reply