Watching your parents or loved ones age over time with Alzheimer’s or other mental health disorders can be upsetting and difficult to accept. We know how scary and overwhelming it must be when somebody close to you is diagnosed with dementia or Alzheimer’s. It feels like receiving a death sentence for a terminal disease. The mere thought of your loved one slowly slipping away from you can be unbearable. It even becomes a struggle on how to talk to a parent with dementia, especially when the disease was detected in the later stages. You get frustrated over how they try to speak their mind but struggle to find the right words… you’re as confused as they are. There’ll be times that talking seems no longer possible and this easily gets you discouraged.
Despite their condition, our parents need all the love, attention and care during this tough time. So, it’s crucial for family members to be the patient’s pillar of support and strength from the onset of dementia until its final stages. Preparing how to deal with dementia and how to talk to patients suffering from this dreaded disease is essential. It helps us foster connection and not further strain any relationships.
First, let’s dive in deeper with the stages of dementia and their signs or symptoms.
When the result of the doctor’s diagnosis of a family member is dementia or Alzheimer’s, the patient might enter the denial phase. That’s why some parents would rather withdraw from their social life. They shy away even from family and friends. When they do isolate themselves, they start to hallucinate or imagine things. Caring for them can become a real challenge for the whole family or the caregiver when their condition worsens. But first, let us know what stage they’re at so we can understand our mom or dad, or any family member with dementia. This will help us talk to them better and cope up with their behavior as their dementia progresses.
See which stage of dementia best describes your loved one, so you can prepare to care for this mental disorder:
Stage 1: No Cognitive Decline / Normal Behavior
Most people who show no symptoms are considered in the first stage. Your mom or dad may experience no signs of dementia although changes in the brain might have already started. These can happen a few years before any symptoms of the disease may appear. Those who are under this stage can function normally and may not show any obvious memory loss.
Stage 2: Very Mild Decline / Forgetfulness
During this early stage of dementia, your parent might forget things easily such as names, places, and events. They seem to lose things more frequently around the house, misplacing familiar objects such as keys and phones. But, not to the point where you can’t tell normal age-related memory loss from serious memory deterioration. These symptoms are not noticeable to other people.
Stage 3: Mild Decline
As dementia continues to progress, family members may begin to notice subtle changes and signs that there may be “something off and not right” with mom or dad. People who are in this stage tend to be more forgetful than ever. For example, they always forget where they placed their purse or keys. Your parent might also have missed several doctor’s appointments. These may happen more frequently. They also have difficulty finding the right words to say if you’re talking to them. If dementia patients still work or do home chores, you’ll notice a decrease in work performance and they usually find it hard to focus or concentrate. This stage can manifest from 2 years and can last up to 7 years.
Stage 4: Moderate Decline
In this stage of dementia, the signs and symptoms become visible to everyone. A parent suffering from this stage struggles to count their money right or manage their finances like how to pay bills. Also, your mom may have a hard time recalling what she had for breakfast, any recent or other past events. Dementia may prevent a patient at this stage from traveling alone to new places. Otherwise, they will easily get lost. Completing tasks is also a struggle as they cannot focus their attention.
At this point, they are in denial about the symptoms, and more often than not, they start to withdraw from family or friends. During this stage, doctors can already detect cognitive problems when a patient undergoes a Mini-Mental State Examination (MMSE). These symptoms can happen for around 2 years.
Stage 5: Moderately Severe Decline
People affected in this later stage may need more help in their daily living activities like taking a bath or using the toilet or dressing appropriately. Parents with dementia at this stage forget facts about themselves, such as their address or phone number, even their own name. They are also unable to know what time or date it is and cannot tell where they are. But, they can still recognize close family and friends or recall childhood memories. This stage lasts around 1.5 years.
Stage 6: Severe Decline (Late Dementia)
During these later stages of dementia, people suffering from this illness need constant supervision at home. Your mom might need help with day-to-day living activities like washing, eating, or dressing up. It’s also worthy to note that dementia patients may now suffer from incontinence at this stage. They frequently forget the names of family members, recent and major events in the past.
Your parent may start to lose language already, trying to find the right words to say. Also, people under this stage suffer from personality and emotional changes, delusions, compulsions, and anxiety. They may become violent and aggressive which can be upsetting and difficult to cope up with if you are caring for them. Although they might be very confused, they can still recognize the people closest to them like family, friends, or relatives. This stage can last for about 2.5 years.
Stage 7: Very Severe Decline (Late Dementia)
At this final stage, many patients need 24/7 care and support from professional carers to help them in their daily living conditions. Seniors living in nursing homes may already experience severe loss of motor skills like walking, and caregivers are the ones feeding them. A parent in this late stage cannot clearly speak anymore or words become unintelligible. So hand or body gestures may be their only way of communicating or none at all. More often than not, many patients die before they even reach this final stage due to other health complications or conditions. This stage can last from 1.5 to 2.5 years.
Now that you know the stages of dementia, you now have a better understanding of this dreaded disorder and its debilitating effects on your loved ones. You begin to grasp why they are doing things that they don’t normally do or say the same things as before. Moreover, knowing what stage they’re at makes it easier for family members like you to find effective ways of communication. This will also help you cope up with their behavior with the aid of proper medications and treatment.
Adult children and other people caring for a senior with mental disorders often struggle with communication. While it depends on the stage of dementia your parent is in, he or she might have trouble finding the right words to communicate. Older people with signs of dementia may use phrases repeatedly or at times, their words become jumbled or disorganized. Sometimes, your parent may forget what he or she was trying to say, muttering something incomprehensible, or revert to a native language, or simply use gestures instead of words.You see, dementia may affect a person differently depending on the time of day and other behavior, emotional, and external factors. So, don’t assume that a conversation you had yesterday will be much like today.
Here are some communication tips that you can use to help you deal with your mom or dad who has dementia. Do remember the words to avoid when you talk to people with this mental condition. Being sensitive and empathetic go a long way when you follow these tips and advice.
1. Don’t ask your loved one with dementia, ‘Remember when…?’
This can be a frustrating and painful experience when you ask your loved one and he or she struggles to jog his or her memory. It’s better to lead the conversation with “I remember when…” instead. Wouldn’t it be great if he or she can search their memory calmly without feeling embarrassed? Don’t force it if the person starts to get confused. Just change the topic if they feel agitated.
2. Don’t say ‘I’ve just told you that’ or ‘You’ve asked me that already’
Saying these phrases only reminds the person of their condition. Don’t think that words aren’t hurting them inside. Besides, there’s no sense passing your frustration over repetitive answers or questions to somebody with dementia. Try to be polite or respectful and patient when you talk to your loved one who has dementia. It’s crucial that they feel understood and listened to.
3. Don’t remind your mom or dad of the death of someone or a pet
If your parent says they just talked to Aunt Jane, whom you know died some 15 years ago, don’t convince them this wasn’t possible. Go with it, just don’t argue anymore. It’s advisable to avoid disagreeing with trivial things. Why? Because you may remind them to relive the grief or pain of losing someone again.
When your parent asks for somebody who passed away, it’s better to come up with another reason behind their absence. Remember, always be sensitive enough to gently remind them depending on their condition. It’s so much better to address the emotion behind this, maybe the person is feeling worried and needs to feel reassured. You can say, ‘Tell me about your sister Jane’ is a good alternative response. Don’t disagree or agree, just let it be. This reduces distress and also treats the person with respect by acknowledging their beliefs and feelings.
4. Don’t tell them ‘You’re wrong’ or ‘That’s not right’
We can’t stress this enough but you should not disagree or argue with a person suffering from dementia. Admiral Nurse Emily Oliver of Dementia UK’s consultant, explains that this technique is called ‘validation therapy‘. It helps people talk to persons with dementia with more empathy and understanding by emphasizing emotions instead of facts. It’s important to remember that what they are feeling, experiencing, or saying is validated – even if it’s not the reality.
5. Don’t use long and complex sentences
It’s best to use short and simple sentences as much as possible. Long and complicated ones can be hard for them to understand. It confuses them even more. Their cognitive abilities slow down and it’s difficult for them to process several ideas all at once. Moreover, avoid speaking fast and in loud environments, it’s good to wait until you have the person’s full attention before you start conversing with them.
6. Don’t ask ‘What did you do this morning or How was your day?’
Don’t pepper open-ended questions like this to people with dementia . It can be stressful for them if they can’t seem to find the answer. So it’s best to avoid asking them. Questions that are answerable by yes or no or with more defined options are way better. Instead of asking ‘what would you like to have for breakfast’, you could suggest, ‘Would you like a cup of tea or coffee?’. Try asking ‘Do you want to wear this white dress or this blue one? You’ll be amazed at how easy they’ll be able to answer compared to hanging questions.
7. Don’t call them ‘dear, honey, love’ or anything other than their name
Dementia patients are still human and they are emotional beings, though sometimes trapped in a vegetative state or seem to be robots. Calling them by their own name keeps their dignity intact. It shows that you respect them despite their condition and it helps in their concentration and memory as well. So skip using words like ‘love’, ‘honey’ and ‘dear’ that patronizes people living with dementia. Don’t talk to them using ‘elderspeak’ which can cause seniors to feel uncomfortable, infantilized, and pitied. These words may sound condescending rather than a term for endearment.
8. Don’t ask your parent, ‘Do you recognize me?’
While it can be frustrating when your parent with dementia doesn’t recognize you…just imagine how stressful it is for them. When you ask the person that question, it can make them feel guilty if they can’t remember, or offended if they do. You may want to avoid sudden bursts of emotions that might get them upset over something they forgot. It may help if you try to say your name and hug them instead. It’s also worth taking note to make sure you have eye-to-eye contact whenever you talk to your parent, as this establishes sincerity and trust.
9. Practice “Listening”!
Let your loved one express his or her thoughts and feelings, don’t interrupt them at the spur of the moment or while they talk. Just let them take their time and listen to them intently. Find out the emotions behind his or her agitation. Dig deeper into why he or she is upset, and do calm them by redirecting their attention to other things. But don’t force it, take a break and then try again after a good 10-15 minutes to take their mind off of the previous subject matter.
“Listen more than you talk. A good idea in almost any situation and particularly useful when with your parents. How will you know what is bothering them (and making them stubborn) if you don’t listen, no matter how trivial the conversation? They may be trying to tell you something without telling you. Sometimes you’ll have to read between the lines.” – Trick and Tips For Dealing with Stubbornness In Seniors, Assisted Senior Living.
10. Smile often at people with dementia
“The smile! Without a single spoken word, smiling speaks volumes. Our facial expressions convey emotions and feelings that transcend language. Regardless of where you’re from or what language you speak, a smile is universally understood.”- Elaine C. Pereira, MA OTR/L CDP CDC – author, speaker, certified dementia practitioner, and caregiver.
Caring for our elderly parents is not easy, especially if they get stubborn as they age and have signs of dementia in the later stages. They usually resist care and dig in their heels which are among the most common reasons why adult children look for outside help from caregivers or nursing homes.
If you are having difficulties taking care of and dealing with a senior parent with dementia, you are not alone! We understand the struggles and challenges when it comes to convincing them to bathe, feeding them or getting them to the doctor, or simply communicating with them. The list practically goes on and on.
That’s why we’ve created this list of tips and best practices from caregivers, medical doctors, dementia experts, and other professionals, to help families of people with dementia. We hope this guide will help you learn how to foster connections with your loved one or parent suffering from dementia with empathy and care.
Listening to songs or music is therapeutic to parents with Alzheimer’s and dementia. Play their favorite music to help calm them down and recall happy memories. This is according to research from the Alzheimer’s Association – when we listen to music, it releases dopamine in our brain that triggers good mood. It also improves our memory functions and encourages social interaction more.
“Don’t push, nag, or harangue your parents. Making ultimatums will only get their backs up, and yelling, arguing or slamming doors could seriously damage the relationship.” – Laura Ellen Christian, 15 Expert Tips for When Your Aging Parents Won’t Listen :The Arbor Company.
Remove all the things that serve as stressors like noise, glare, and background distraction (e.g. having the television on). All these can act as triggers, so better avoid them. Try to move the person to a quieter place for a more relaxed space, rest, and privacy.
You can also try offering a security object like a doll for them to cuddle and calm down. Soothing rituals and limiting caffeine intake can also be helpful to prevent agitation.
Ever noticed how a good massage helps soothe any person, even a baby enjoys it. A gentle touch or a warm hug can result in a calming effect. It creates a bond between the carer and the person with dementia and helps increase trust. A gentle pat on the hand or shoulders or a soft back rub is a great way to help them feel less agitated or anxious. Truly, touch is everything when words fall short.
You may want to use some essential oils at home for some health benefits. According to a study, aromatherapy (use of oils from medicinal herbs like lavender, bergamot, and lemon balm) can help soothe the senses and calm the patient. The smell can help reduce aggression, agitation, and other psychotic symptoms in patients with dementia. Seniors enjoy deep sleep, have improved concentration, and reduced hallucinations.
According to research, having a pet has many benefits to our mental health, and that includes even older persons with dementia. Patients with pets are less agitated, physically active and have increased appetite and joy. Pets are one of the best stress-relievers and are a great way to treat boredom and social isolation.
Spend some quality time with your parent. Going out for a walk in the park together for some fresh air can be a good idea. You may also want to do some gardening or bake pies together. Schedule a day when you put on some good old music and let your mom or dad enjoy dancing. If they are in a nursing home, check their daily activity plan to see if there’s a balance of physical and mental activities for senior patients.
Make use of arts and crafts, puzzles, stitching, or other activities to help engage the person and divert their attention away from the stress. These are crucial to keep the elderly persons with dementia physically and mentally active and keep the aggression and anxiety at bay.
According to research, having a daily routine plan is one of the most effective methods for reducing challenging behaviors of a senior suffering from this disease. Give your mom or dad as much independence in daily tasks as possible.
“Much of the frustration in Alzheimer’s patients come from losing the ability to perform basic daily tasks. If you are caring for your parent, it may be based on their having taught you how to perform these tasks when you were a child. This loss of ability can lead to stubbornness when you try to step in and do the tasks for them. When possible, let your loved one perform intimate or basic tasks on their own. This can reduce stress and frustration for both parties.” – How to Deal with Stubbornness in an Alzheimer’s Patient, Alzheimers Inspire; Twitter: @ALzDementiaHelp
It’s important to be aware of new medications prescribed by the doctor to your loved one. Ask their physician and pharmacist to make sure that it won’t create any adverse reaction when taken with their other prescription drugs. According to the Alzheimer’s Association, medication interactions may cause negative side effects and may result in aggressive behaviors.
According to the Alzheimer’s Association, it’s helpful when you try to say calming phrases such as:
“You’re safe here”
“I’m sorry that you are upset”
“I won’t leave you”
These words work like a soothing balm that calms down your loved ones and makes them feel safe. It’s equally important that you maintain your composure when they get violent or aggressive. Don’t get upset, just be positive, remain calm and reassuring. Try to always speak slowly in a soft tone.
11. Use memorabilia and make them remember the good times
You can always try reminding them about their old adventures, people and places they liked to visit. You can bring pictures or sing their favorite songs. If they have no memory of past events, or they get upset when you bring them up, change the topic, and talk about something else. (You may want to keep in handy a list of things to talk about in case you get stuck.)
12. Ensure everyone’s safety: the patient with dementia, you, or your caregiver
“Make sure you and the person are safe. If the person is unable to calm down, seek assistance from others. Always call 911 in emergency situations. If you do call 911, make sure to tell responders the person has dementia, which causes them to act aggressively.”- Alzheimer’s Association
These are effective strategies that you can try to converse with persons who lost the ability to communicate due to their mental condition. We know that taking care of them can be pretty challenging and it’s one of life’s most difficult situations to be in. But learning how to practice a lot of patience and listening, will get you through it.