- Various stages of dementia
- You bring the patience
- They’re individuals who will react to your energy
- Learn the patient’s triggers
- If at first you don’t succeed…
- You can’t care for them if you’re not caring for yourself
- Summary
Recently I was asked to write a blog post about caring for people with dementia. I did my best to break it down into one post but there is too much to unpack for it to just be one.
The following post is focused on what changes to expect in someone with dementia. It also focuses on helping you, the caregiver, with a manageable perspective to maintain some sanity while caring for someone suffering this disease.
Part two of this post, Action Items for Dementia Caregivers will be posted later this week. It will focus on actionable items to help you care for someone in this population.
Also please note these tips are for professional caregivers and family caregivers alike.
Various stages of dementia
This disease leads to so many different odd behaviors. In the beginning stages, the patient may only infrequently forget where they are or what they’re doing.
As it progresses they’ll hallucinate, lose motor function, develop idiosyncrasies like humming the same tune over and or having a phrase they like to repeat, among many others.
Throughout this process they’ll revert to childlike states. Some will be afraid 100% of the time, screaming out for their mother whenever they are alone. Others may be playful or inappropriately flirty. Others still may see everyone around them as a threat and live fearfully or simply treat everyone with extreme cruelty. There are as many types as there are individuals.
These patients will lose awareness of their urine or stool and they will have to be cleaned up multiple times a day to keep from developing skin injuries.
Usually their appetites will decrease over time until they’ll only eat a little bit of one meal a day, or they’ll only take in liquids.
Their ability to chew and swallow will diminish and they’ll have to have their diets changed to soft consistency, or pureed foods and thickened liquids. You’ll likely be hand feeding them before it gets to this time, but when the diet starts requiring being changed, make sure you’re giving them small bites to lower the risk of aspiration.
If they’re coughing regularly while eating, there’s likely a change that needs to take place with their diet. Let your providers or supervisors know if this is happening.
I did have one patient who was voracious until about two weeks before she passed. She ate 100% of every meal put in front of her. She would chew her fingers, items she found laying around, and “air-chew” any food she was hallucinating as well. On more than one occasion she was even caught eating her own stool! She could not be trusted outside of a onesie.
Eventually, these patients may end up having physical ticks only. They may lose their ability to swallow before passing. And if they survive to this part, you will start to see them “wasting.” They will become very fragile, immobile, non-responsive to most physical stimuli, and begin to appear to be only skin and bones.
Many people with dementia will pass prior to this point due to a fall or some other disease exacerbated by any number of factors. But the eventuality usually ends with an emaciated individual who may appear to family as only a shell of themselves.
It’s morose, but it’s real. It is a terrible disease to watch someone progress through, especially a loved one. At this juncture, there’s little other choice but to accept that this is the reality of it, move past the fear, and see what new perspective you can bring.
Humor will be your best friend. Don’t forget that. (See? Humor. Finding it is what will get you through.)
And all of the above aside, it’s not bad all the time. These patients can be fun, incredibly endearing, and even joyful for long periods of time.
You bring the patience
As the caregiver it’s important you remember that for the majority of this disease process these poor souls do not have any patience. Zero. In your relationship with them you will have to provide 100% of the patience for the two of you.
That said, I DO NOT think it’s realistic to always be chock-full of patience when dealing with dementia patients. Don’t be hard on yourself if you lose your cool. You are human. Take a break. Ask another family member, or if you’re staff, as a colleague or supervisor if they can attempt the task you couldn’t complete. It takes a village.
They’re individuals who will react to your energy
These patients will respond to how you treat them and many of them will need to be treated in a specifically different way than another. Just like people, eh?
It’s important you approach your interactions with dementia patients with ease. It’s important that you be okay with them not wanting to do something your way. It’s important you remember their behavior, including physical outbursts like kicking and hitting, is not about you. You should never take their behavior personally. It’s no small task, but it’s the best thing you can do for yourself.
Remember, when they’re aggressive it’s usually because they’re scared and confused. If they become violent, step away from them immediately. You may be seen as a threat.
Assess and make sure they’re currently not a harm to themselves or others. If you’re staff, notify other staff and make sure other patients give a wide berth.
If you’re a family member caring for a violent demented loved one, give them a little time. Take a non-threatening position at a safe distance and ask them how they’re doing, or what they think is happening.
And regardless of if you’re family or staff, if redirection doesn’t quickly appear to be working, call 911. EMS will come help to keep them and you safe.
There’s a bit on this in my post Caregiver Retaliation that would be a good read if you’re someone caring for a dementia patient.
Learn the patient’s triggers
For violent patients, once they’re calm and this situation is deescalated, ask someone else (another loved one, a neighbor, or a fellow staff member) to watch them for a time. Take a break and allow yourself to destress for a bit.
If you’re staff, fill out an incident report before you take a breather. Don’t include the report as part of your break away.
Most of these patients are physically unable to do any real damage but it’s still a surprise and a shock when they are suddenly violent. Especially because within minutes after an episode, they may be their sweet old selves again.
Try not to hold those bad moments against them. And do your best to learn their triggers. They cannot manage them on their own.
If at first you don’t succeed…
When a dementia patient wants to refuse an assessment, I don’t force it. I take a very passive physical position like kneeling near them or sitting next to them and I ask them why they want to refuse. If I can, while we’re talking, I turn the conversation in a way that leads them to wanting to know what their blood pressure might be, for example. If that doesn’t work, (though it nearly always does) that’s okay. I tried. And in 5 minutes or 2 hours, I can come back and try again. They may not remember that first attempt at all.
You can’t care for them if you’re not caring for yourself
Essentially what it boils down to is something my post For the Caregiver gets into with more detail. The main priority in caring for these patients is to keep them safe, but the constant priority while you’re a caregiver is to keep yourself safe and sane.
Enter into care with them calmly and know your boundaries. If you’re waiting until you’re upset before asking for help, you’ve waited too long. Stay ahead of your stress.
For staff working in memory care, learn which patients are more difficult and take turns with your fellow staff in caring for them. Learn the idiosyncrasies of your patients and cater to those. That includes knowing and avoiding their triggers.
Staying ahead of your stress and catering to these patients will make your job more enjoyable and will help the patients’ experience be more enjoyable.
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 know their triggers, learn their idiosyncrasies, and remember to be patient with yourself and them. You are the only one in this relationship that will be patient.
If you’re staff, take good care of yourself the nights and mornings before work. If you’re family and living with a dementia patient, keep yourself in a healthy state. Take the breaks you need and ask for help from other family, social services, and local non-profits. See For the Caregiver for a start toward some great resources.
Regardless of your relationship to the patient, make sure you figure out your boundaries. 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 caring for them and staying well focused on their needs.
Thank you for reading! Please share this site with anyone you think could benefit from it!
Part two of this post, Action Items for Dementia Caregivers will be posted later this week.
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