Everybody gets old. That is a fact of life, and nobody can stop it even with the most advanced technology that we have now.
Unless someone has finally found the fountain of youth, and I wasn’t given the memo…
As we get older, things start to happen. Our health starts to deteriorate and we start having different kinds of illnesses.
One devastating condition that some people suffer from is dementia.
According to World Health Organization, dementia is a syndrome – usually of a chronic or progressive nature – in which there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation.
Dementia affects every individual and their families differently. Some are very accepting and quick to prepare for what’s to come while others are in denial and are having a hard time facing the reality of it.
Having dealt with so many residents suffering from dementia for almost 2 decades, I wouldn’t say I’m already an expert in dealing with the residents and their respective families.
Symptoms may vary from person to person and depends on the type of dementia. Even the rate of progression is not the same for every individual suffering from the disease. Some cases may progress slowly and may last up to 10 years, and sometimes they may last more than that depending on how soon they were diagnosed. Some may deteriorate very quickly which can leave family members or caregivers frustrated and devastated.
Apart from the usual forgetfulness and the confusion that people with dementia usually manifest, I have decided to make a list, in no particular order, of what I think are the most challenging behaviors that people with dementia often display. While most of the scenarios talk about nursing home environment, I’m sure that some of these behaviors are also being encountered by their caregivers at home. I have also included some strategies to manage these challenging behaviors that could hopefully help caregivers dealing with them in any settings.
Dementia Behaviors List
1. Wanting to go home
One phrase that is sometimes distressing for family members to hear from their loved ones with dementia is “I want to go home.”
No matter where they are, it could be in their own home, in a shopping center, at the doctor’s clinic or even in the nursing home, some residents just couldn’t help but say that notorious line.
Some residents would even start to pack their things and begin walking towards the exit door. Some would ask the nurse to book a taxi so they can go home.
Home could mean a lot of things to residents with dementia. It could mean their previous home prior to admission in the aged care facility. It could also mean their home when they were young wherever part of the world that maybe.
It could mean any place they have stayed in the past which provided them comfort, security and happiness.
It’s best to ask them “Where is home?” and encourage them to talk more about it.
Ask them why they want to go home, what they miss about home, what they used to do there or who they were with in that home.
Try to use distraction or diversionary tactics. Ask them to go for a walk, listen to music, or do some group activities with other residents. Try to show them some family photos if they have any in their room and let them talk about them. Don’t try to keep asking who are in the photos if they can’t remember as it may frustrate them more.
If they insist on going home, maybe you can tell them to wait there while you call a taxi for them. This is called therapeutic lying.
Residents with dementia may become angry instantly without a warning. They may become combative and start hitting, pushing, kicking, yelling and even swearing. Some may even try to attack you physically like the male resident who decided to pick up the TV and threatened to throw it at me or the old lady I was assisting to go to bed who suddenly started to hit me continuously on the head with her walking stick .
These type of residents are best to be left alone until they settle down. Give them space and time and come back at a later time. Just make sure that they are safe.
It’s a good idea to determine the cause of the behavior. It could be that they are in pain, hungry, thirsty or wanting to go to the toilet.
You could also try sending a different caregiver next time and see if the reaction will be the same. It could be that the resident does not like the first caregiver.
Whatever happens, do not argue with an angry dementia resident as you might make them angrier and you will never win anyways.
If all else fails and the resident and those around him are no longer safe, then maybe you can start giving their prescribed medication, if any. Medications should be the last resort when trying to manage challenging behaviors.
3. Calling out
Residents could be calling out for help, crying, or even screaming, but when you go and ask them what they want they will simply say “I don’t know” or “Nothing”.
Residents with dementia sometimes could not express what they need depending on the severity of their illness. It is our job as caregivers to find out whether they have unmet needs.
It could be that they are in pain, have an infection, are feeling hot/cold, are hungry/thirsty, are in an awkward position and feeling uncomfortable or maybe they just simply want to go to the toilet.
They may also be feeling anxious, bored, angry or depressed. Whatever the case may be, we have to try to do something and if it doesn’t work, try something else.
You can try offering them food or drink, taking them to the toilet, repositioning them, distracting them by giving them an enjoyable activity, minimizing the noise levels if it’s too high, or giving them gentle hand massage and communicating with them.
Dementia may cause memory problems due to some glitches in the brain. When residents could not remember where they have put things or they could not recognize people, they try to fill in the gaps by creating faulty memories or delusions that make sense to them.
Some might start to accuse caregivers of stealing their stuff like their money or their clothes.
Some might even say the nurses are trying to kill them by giving them poison.
If you are faced with this situation, try not to take it personally. Remain calm and do not argue or convince them that you did not take it. Don’t agree either that you took it if you didn’t. Instead, provide reassurance by offering help to look for the “missing/stolen item”. Try to distract them by saying “Why don’t you have a snack first then I’ll help you look for it after that?”
If you can, try to keep a spare or a duplicate of the item that’s constantly “missing/stolen” in order to avoid the stress of always looking for it.
Residents with dementia often walk around aimlessly, or so we thought. Have we ever thought of the possibility that people with dementia maybe wandering for a reason? Maybe they just don’t remember what that reason is or what they set out to do due to memory problems and they are unable to explain it.
Wandering is a normal reaction to settling down in a new and unfamiliar environment. They might be bored and just wanted to go for a walk. They might be looking for someone or something, they might be hungry/thirsty and are trying to look for the kitchen or it could be that they are looking for the toilet. They might also be in pain but unable to express it.
This wandering may just take place inside the house or facility where they could be going in inappropriate areas like other resident’s rooms, but sometimes they may try to go out.
If your loved ones with dementia tend to wander, try to provide a safe environment for them to wander around.
Maybe they’ve had too many chocolates and have too much energy. You could go with them for a walk in the garden or take them out for shopping. Just to make sure to keep a close eye on them while you are out.
You could warn your neighbors that your loved one has a tendency to wander and ask them to keep an eye on him/her.
You could put a form of identification on them by putting a label on their clothes or you could get them a bracelet with their name, address and your phone number so people can identify them if they are found.
Make a habit of taking their photo everyday so it’s easier to identify and describe them when you start to ask the neighbors and the police about them.
If residents try to go out, don’t argue with them. Ask them where they want to go and why they want to go there. Try to distract them by telling them to have a cup of tea first and then you can take them to where they want to go or you could ring their family to come pick them up. If they insist, maybe you can go along with them and ask someone to help you convince them to go back once you’re out.
6. Inappropriate sexual behaviors
This is perhaps the most awkward and challenging behavior that a dementia resident may display. It is often embarrassing for family members every time they are told of the inappropriate behavior of their loved ones.
Some dementia residents may lose their inhibitions. They may start to undress in public. They may make inappropriate sexual comments to staff. They may even masturbate in front of other people.
If this behavior is manifested by a dementia resident, try to be calm. Be firm. Try not to encourage it by explaining to them calmly and without judgment that it is inappropriate. Make sure that everyone is consistent with their approach, and not one person is allowing the inappropriate behavior to carry on.
If possible, try to take them to their room and close the door to provide privacy. Remember, they are still adults with human needs.
Inappropriate behavior could be a result of boredom, so try to keep the resident busy with engaging social activities.
They may be hoarding things for safekeeping and to be “ready for the rainy day”. They may remember their past life when they were living with their brothers and sisters who used to take their things so they’re getting them back and trying to hide them.
Maybe they love collecting things when they were younger. This collecting behavior is intensified as they age, especially if they have dementia.
If they have an early stage dementia, maybe you can still try to explain to them and ask them to reduce some of their collections by giving them away. If they disagree and you are worried about their safety caused by too much hoarding, then maybe you can go to their room discreetly and get rid of some and hope that they will not notice.
Keep them preoccupied by providing stimulating activities such as folding their own clothes and organizing their drawer, or creating memory boxes where they can put their favorite collections.
Try to find and monitor their hiding places and check on them regularly. They could hide things in the drawers, in their closet or even the garbage bin. Make a habit to check the bin before throwing away the trash.
Dementia residents could display restlessness by fidgeting and pacing up and down.
Like with other behaviors, it is best to find out the cause of their restlessness and address them accordingly. Interventions will depend on the cause. For example, they could be hungry or thirsty so offer them food or drink. They could be bored or anxious so offer them something meaningful to do, provide reassurance or increase their daily exercise activities. If they are in pain, provide non-pharmacological or pharmacological intervention whichever is applicable.
If they fidget a lot, try to give them something to occupy their hands with such as worry beads or a box of items that they really like.
Do not just ignore and treat it like it’s just a part of the illness.
9. Shower refusal
Some may say they are cold and some don’t want to take a daily shower as it was never their habit while they were still at home. They may not have showered when they were younger as often as we do now.
Whatever their reason is, we should not impose our own values about how often they should have a shower or bath. Some still have the ability to express their wants and needs so we must try to understand and respect their wishes in order to maintain their dignity and sense of control.
Having said that, we need to put a balance between what they want and what they need. We should try to explain to them the importance of personal hygiene and the consequence of taking it for granted.
We should explore their reasons for refusing to have a shower and try to address it. If they feel cold, make sure the bathroom is warm enough by turning on the heater and running the water before they step into the shower.
If they are really refusing to have a shower or bath, we can also offer a bed bath/sponge bath if they want to just have a wash in bed. Make sure to cover them with towels so they don’t feel cold and only expose the part being washed one at a time. There are some no rinse products like body wash, wipes and shampoo that can be used if needed.
Some dementia residents may have a fear of water or fear of drowning which they may start to feel when water is pouring over their head. Try to use a hand-held shower in order to avoid this feeling.
Some people want to look presentable when they go out of the house. Maybe you can try telling them that they will be going to a doctor’s appointment or that you are taking them out for a lunch so they need to have a shower.
For residents who come from a different cultural background, you can try asking a staff member who can speak their own language to speak to them and explain what you want to accomplish.
Dementia may alter someone’s body-clock or sleep-wake cycle. They might be sleeping during the day and awake most of the night.
This can cause problems for the resident as they will be missing out on mealtimes and other daytime activities. It can be worse if they display other behaviors such as calling out or wandering as they can be disturbing other residents’ sleep as well.
Try to keep them awake during the day by keeping them busy with various activities.
Make sure their room is comfortable and conducive to sleep by regulating the temperature and the amount of light.
Avoid giving them tea, coffee or soft drinks in the evening. Try to offer them warm milk instead.
Having a warm bath or shower before bed may help them relax.
Triggers for Behaviors of Concern in Dementia
With any of the above-mentioned behaviors, find the underlying causes/triggers behind the behavior and deal with them accordingly. There is always a reason why they are behaving that way. It could be any of the following:
- The need for the toilet
- Lack of Sleep
It’s best to make a log of their occurrences to identify a pattern. Make a record of what time it happened, what/who could have possibly caused it and what strategy worked at that time in order to possibly lessen or avoid the triggers. Strategies that might have worked today might not work tomorrow but it’s worth trying.
If all these strategies have been ineffective, then consider referring them to the doctor. They might need medication to help manage these behaviors. Remember, medications should be the last resort and not the the first choice.
It’s the Disease, Not the Person
I know it can be very difficult to deal with these challenging behaviors, but we have to remember as a caregiver that our loved one is not doing them on purpose. The disease makes them lose control of their emotions, their judgment and even their actions so we should not take things personally.
We should not judge them based on how they behave now, but for whoever they were prior to living with dementia. We should remember that once in their lifetime, they too were “normal” and are worthy of being treated with kindness and respect. We should do our best to give them the care, support and understanding that they deserve so they will continue to have a good quality of life throughout their old age.
I know it’s not easy, especially if you deal with these behaviors everyday and that you yourself might be on the verge of losing it. You need to know your capabilities and seek for help if necessary.
At work, I see our staff looking after our dementia residents with all these different challenging behaviors. I could really feel the patience and the passion when they are feeding the residents who sometimes spit the food on their faces, answering the same question over and over again, and getting beaten when they try to shower the aggressive ones. I just say to myself “These people deserve a superhero badge.”
As I have said in my previous post About Maria, you have got to have a strong passion with what you do in order to efficiently fulfill your role.
Do you know anyone who is suffering from dementia?
Have you experienced dealing with any of the challenging behaviors listed above?
How did you manage them?
Leave a comment and let me know.