If you're caring for someone with dementia, you're probably already experiencing some of the behavioral challenges with the disease. Whether it's silence, sadness, anger, anxiety, confusion or fear, the behaviors can be very difficult and emotional for caregivers to cope with.
Here are 10 tips and strategies that can help you cope with some of the more common dementia behaviors that come up day to day.
1. Dealing With Confusion
Depending on your loved one's stage of dementia, you may already be dealing with cases when they get confused with people, place and time. They may ask to see their brother, who's been dead for many years, go to the bus stop to get to work, or head to the concert hall for a recital, despite having not picked up their instrument in ages.
The Do: Play along. Role play. Instead of correcting, validate their thoughts and then try to redirect their attention.
For example, if your mother says she needs to get to the bus stop to get to school, respond by saying "you're right, but you have to get dressed, brush your teeth and have breakfast beforehand." By the time they're finished, they've often forgotten the original request.
If you're mother asks to call her brother who might be dead, call your husband and have him role play with your mother for a few minutes. You might even be able to find a little humor in the situation!
The Don't: Avoid correcting your loved one. If they say they want to speak to their deceased spouse, correcting them and telling them he's passed away can be very traumatic. In fact, it can be as if they're hearing the news for the very first time. Imagine the heartbreak.
The fact is, your mother or father believe their thoughts. Telling them it's no longer 1954, when they truly believe it is, is deeply confusing and upsetting. Imagine if someone told you it's no longer 2018 but really 2034. You'd either think it was rude and condescending or become very agitated and confused. Even if someone showed you a calendar or newspaper showing you that it was 2034, in your mind, you're still pretty convinced it's 2018 right now, no matter what anyone shows you. And if you end up believing that it really is 2034, what just happened in the last 16 years! Equally upsetting.
2. Dealing With Aggression
Unfortunately, some people who suffer from dementia can become verbally or physically aggressive at times. If this is the case in your situation, don't take it personally and try not to blame your loved one, it's the disease not them.
The Do: Stay calm, remove yourself from the situation and get behind a barrier like a door. Give them 10-15 minutes to calm down. Re-introduce yourself to the situation. Call a family member for help if the situation does not improve itself.
Most importantly, find the source of the agitation. Some common triggers might be:
- Change in living conditions
- Change in caregivers
- Change in routine
- Infection (fever, urinary tract infection)
- Time of day (sundowning)
- Discomfort (pain, hunger)
Keep a journal so you can notice patterns. If the behavior sustains itself, get a medical evaluation. Sometimes getting a blood or urine test reveals a simple infection that can be cleared with medication.
Try being reassuring. Sometimes you can even try a gentle touch. This is especially true if they're anxious or confused.
The Don't: Do not react, scream back or raise your voice. Do not grab, squeeze or physically restrain your loved one if they are not putting themselves or someone else in danger. If you feel you or someone else is in danger, call for help. While hard to do in the heat of the moment, remind yourself it's the disease, not your loved one being aggressive. Don't take it personally.
3. Dealing With Disorientation and Wandering
It's not uncommon for those with dementia to forget their location, where they're going or how to get home. As the disease progresses they may even wander out of their home unsupervised, getting lost, which can be terrifying for caregivers and obviously dangerous.
The Do: First, it may be time to hang up the keys. While this can be a devastating impact on one's independence, if the dementia is causing serious disorientation, driving is no longer an option.
Second, get a medical alert device with a GPS tracking system that allows you to track your loved one no matter where they are. If they don't like wearing a wrist band or pendent, get creative and stick it into a purse they always take with them. Some tracking devices can even slide into the soles of a shoe!
Third, if wandering is an issue, you might want to consider getting a perimeter alarm, so your notified in the event of a crossing of a perimeter.
Fourth, get an ID bracelet that can't be removed, so that they can be identified in the event they get lost and then found, so you can be called.
Lastly, if all of the above fails, you may have to consider 24 hour care.
The Don't: Don't lock exit doorways in a way that prevents your loved one from getting out of the house if they need to. While it may prevent them from wandering, it's also a serious fire hazard.
Don't get mad at them for not remembering where they are, it makes their disorientation worse.