Get Advice from the Experts: Tips for Dementia Caregivers
It can be difficult to care for a parent with dementia when they are living in their own home. The dementia caregiver often has to take on the role of parent, providing emotional and physical support. This can be challenging, but there are ways to make it work.
In this guide, we will provide tips for family caregivers who want to keep their loved ones at home. We will also discuss the main signs and symptoms of dementia, as well as what to expect as the disease progresses. Finally, we will give some tips for dealing with difficult behavior.
What help is available for dementia carers?
As a dementia carer, it’s important to know the types of help that are available to you. Not only can this make your job easier, but having support can also help you in providing the best possible care for your loved one. Assistance is available through local and national organizations, including programs designed to provide financial support, social services such as counseling, in-home care, respite care and more. Support groups can also help connect you with other caregivers facing similar situations.
What is the Difference Between Alzheimer’s Disease and Dementia?
Dementia is an umbrella term that refers to a group of symptoms caused by various diseases or conditions. Alzheimer's disease is the most common type of dementia, accounting for about 60-70% of cases. Other types of dementia include vascular dementia, Lewy body dementia, and frontotemporal dementia.
In the early stage, it may present as forgetfulness, irritability, or confusion. As dementia progresses, Alzheimer's gradually destroys brain cells and causes problems with memory, thinking behavior, and the ability to carry out daily tasks. Specifically remembering recent events; concentrating; organizing thoughts or activities; all become more difficult.
1 in 11 Canadian over the age of 65 currently has Alzheimer’s disease or related dementia.
How Can You Help a Family Member with Dementia?
It’s important to have an understanding of dementia behaviors and the progression of the disease. This will help you anticipate what your loved one may experience and plan accordingly.
Realize there is always something that can be done to help. You don’t have to do it all yourself, and you can ask for help when needed.
Remember the person that has dementia can play a role in their own treatment. They have residual strengths and abilities that should be utilized whenever possible.
Keep in mind dementia affects people differently. What works for one person may not work for another. Be prepared to change your approach as needed.
Seek out and find local resources, the Alzheimer's association, or a national institute that may have free resources to help you develop problem solving skills.
Finally, don’t forget to take care of yourself too! Caring for a loved one with dementia can be very challenging. Be patient. This is a difficult journey for both of you.
Care Principals from Katie Maslow
The following principles are derived from the work of the American Society on Aging Award Winner, Katie Maslow on dementia care.
Resource: Today’s Geriatric Medicine
The person needs companionship, warmth, and love.
The person needs to feel secure and safe.
The person needs to have pleasure and have a stimulating environment.
The person needs to feel valued.
The person needs to maintain his/her self-esteem.
The person needs to be treated with dignity and respect.
Let's explore some specific tips on what to do for each of the most noticeable signs of dementia.
Women make up 72 percent of Canadians with Alzheimer’s disease.
Three Common Behaviours Exhibited by People Living With Dementia
Common Behaviour #1: Memory Loss
All of us will experience some kind of memory loss as they get older. For some, this might be just a mild inconvenience - forgetting where you put your keys, not being able to recall someone's name, walking into a room, and not knowing what you were about to do are all examples of troubling behavior but not life-threatening.
Age-Associated Memory Impairment
You are likely to have age-associated memory impairment if you are experiencing any of the following:
difficulty recalling recent events
forgetting important dates or anniversaries
having trouble finding your way around familiar places
repeating yourself often
but you do not have any trouble:
speaking clearly
completing routine tasks
caring for yourself physically
Dementia-Related Memory Loss
Almost 40% of us experience some form of memory loss as we age, especially once we hit 65. Dementia-related memory loss is much more significant.
If your memory loss is more severe and you have difficulty:
completing tasks you are familiar with
caring for yourself
remembering your name or the names of close family members or friends
becoming lost in your neighborhood
difficulty with abstract concepts such as time or numbers
then, it may be time to look after your own health and talk to a medical professional about a dementia diagnosis.
Strategies for Dealing with Memory Loss
There are several strategies you can use for helping your family member with memory loss. If you are a caregiver, here are some caregiving tips for helping the person with dementia and other family members:
Within just five years, an additional 250,000 Canadians could develop Alzheimer’s disease or related dementia.
Use Language That is Easy to Understand
It's important to keep things simple for your loved one who is struggling with memory loss. Speak slowly and ask questions that can be answered with a one or two-word response. This will make it easier for them to focus and remember the answer.
People with dementia may struggle when choosing among a variety of options. When possible, try to limit the choices you give them. Instead of asking, "would you like to go to the store or the park or would you rather stay home?", simply ask, "would you like to go to the store?". This allows them to think about only one option and make a decision.
Use body language and facial expressions to emphasize your meaning when communicating. Your family member may still be able to pick up on physical cues even if they don't always see the visual cues.
Avoid using negative language when speaking with your loved one or their behavior changes. They may already feel like they are losing control of their life. Some examples:
use a "person who has dementia" instead of "demented or dementia patients"
use "memory loss or cognitive decline" instead of "not all there"
use "changes in behavior or troubling behavior" instead of "being difficult"
use "challenging or life-changing" instead of "tragic"
use "family caregiver or primary caregiver" instead of "sitter"
Resource: Alzheimer’s Society
Create a Calm and Comfortable Environment
If your loved one is feeling overwhelmed or stressed, provide them with some quiet time and relaxation. A space with few distractions can help them to calm down and reduce stress.
Make lists especially for everyday tasks. For example, in the bathroom, you may put a list up on the mirror of the important daily personal care tasks so your loved one can review. A list at the front door of the steps that need to be taken each time they leave can help them avoid forgetting to set the alarm or lock the door. Visual prompts can be very effective.
Consider installing safety features in your home. Many products on the market can make it easier for your loved one to live safely at home.
Make sure your loved one is always oriented to their surroundings and they know where they are. Wandering and getting lost can be very dangerous for someone with dementia.
You can also help them by keeping the environment familiar and organized. Make sure they have a routine and stick to it as much as possible. Try to avoid changes, which can be confusing and frustrating for someone with dementia. Seeing familiar objects can help an older adult with dementia stay calm.
Engage in Recreational Therapy
Often people with dementia may feel isolated and alone. You can also help by providing stimulation in the form of music, activities, conversation, and socialization.
Soothing music has been shown to have a positive effect on people with dementia. Consider playing calming music in their familiar environment or singing to them.
Playing games can be a great way to help people with dementia. Games are fun, and that means it will be easier for the person with dementia to enjoy themselves and spend time doing something they like. However, playing games does not mean simply sitting down in front of the TV or computer screen.
The best types of games involve physical activity as well as mental stimulation. For example, there are board games that require you to think strategically while moving pieces around on a game board; card games like Bridge where you have to remember what cards other players played; puzzles where you need to use your mind's eye (or imagination) to figure out how the image is put together from observation alone; word puzzles which ask questions about words within certain categories
Play Games the Whole Family Can Enjoy
When my sister and I were kids, we loved playing games together and it was especially fun when mom and dad would jump in. We played cards when we were camping and at Christmas, there was always a game of monopoly on the go. Of course, we grew out of it as teenagers, but it is a fond memory.
I was so pleased when our caregiver reintroduced gameplay as a form of therapy for my mom. It gives us something to bond over whenever I come to visit. Each time we play, I can see that she is getting better at following the game rules and remembering what cards had been played, and even dad seems more relaxed. It has really brought us together again as a family.
The great thing about games is that they can be adapted for any level of dementia – you just have to make sure the person with dementia is not feeling overwhelmed.
Keep Meals and Medication Routine
Many people with dementia find it difficult to remember what they ate earlier in the day. You can help by keeping a food journal and recording everything your loved one eats. This will make it easier for them to keep track of their diet. Some recent studies show diets that are limited in processed foods, meat, dairy, and sweets may lead to better brain clarity. Consider introducing more of a Mediterranean diet that includes more fruit, vegetables, legumes, whole grains, nuts, olive oil, and fish. It makes good sense to focus on nutritious foods.
Medication resistance is a very common dementia behavior in people with dementia. They may hold on to false beliefs that they do not need the medication. Even over-the-counter medications may be problematic. It is often better to give your elderly loved one a pill at a time during the designated time, rather than to present a whole handful of pills at once.
Avoid changes in the daily routine as much as possible, as they can often lead to agitation and confusion or aggressive behavior.
Be Aware of Heightened Emotions
If your loved one is having a difficult day, avoid trying to push them too hard mentally or physically. Take some time to relax together and have a positive experience. This will help to recharge their batteries and they will be better able to handle future challenges later.
People with dementia can become isolated and lonely for a variety of reasons. It may be that they are no longer able to do the things they used to enjoy, or because their friends and family have stopped visiting them. Others may feel overwhelmed by their new surroundings or confused about what is happening around them. Recognizing and honoring your loved one's feelings can help them deal with them.
Resource: Alzheimer’s Canada
Common Behaviour #2: Resistance to Help
It can be difficult to know how to best care for a parent who is living with dementia. Especially as older adults may not be very open to receiving care. Even if you have difficulty speaking about your own needs, it is so important to discuss caregiving options in the early stages of the disease.
My father-in-law was diagnosed with Alzheimer's when he was 70. He still has many days where he is mostly fine, but every once in a while he does something that worries me. For example, last week he filled his hummingbird feeders with juice and put cat food in the bird feeders. He still drives which scares me to death. He went to the post office about a month ago and then couldn't remember how to get home and had to call us. We have offered to have him come and live with us or to bring some help into his home so that he can stay there longer, but he refuses to talk about it. I just don't know what to do.
It is important to understand that dementia causes changes in mood and behavior, which can lead to resistance towards help. Both you and other caregivers need to be patient and understanding, while also being firm in your resolve to provide care.
Approximately 500,000 Canadians are living with Alzheimer’s disease or related dementia.
Strategies for Dealing with Resistance
Seek to Understand Why the Person Living With Dementia is Resistant
You should always seek to understand why someone is resisting help. Is it because they are in denial about their diagnosis? Perhaps it is because they feel like they are a burden? If you are considering hiring in home care, they may be concerned about having a stranger in their home. Once you have a better understanding of why your loved one is resisting help, you can begin to work on overcoming those barriers.
Talk it Out
Start by talking about the issue. By broaching the subject gently and with understanding, you may be able to get your loved one to open up. Be kind and supportive and allow them to express their feelings. Let them know you are worried about them. You are there to help, but also that you will need their cooperation to do so.
Identify the Benefits of Getting Help
If your loved one is still resistant, try using positive reinforcement. Focus on the benefits of having help come in. Show them that you care about their well-being and want to do what's best for them. For example, by having help come in, they wouldn't have to do all the cleaning for themselves. Or you could find a professional caregiver who also likes to play cards and go for walks so that they could have more companionship.
Set Clear Boundaries
Sometimes it may be necessary to take a firmer stance and use a little bit of coercion. Try setting some boundaries. Let them know that you will only provide a certain level of care and that they need to accept help from others if they want to continue living at home.
Consider Engaging Professional Help
Consider seeking professional help. A dementia specialist can work with your loved one to create a care plan that works for both of you. Sometimes having the message come from a professional can make it easier for your loved one to hear.
No matter what course of action you decide to take, remember to be gentle but persistent. It's important to remember that dementia changes how we think and behave. What might have worked before may not work now. You will likely need to be flexible and adapt as the situation demands.
Common Behaviour #3: Stubborness
For family caregivers of a parent with dementia, it can be frustrating trying to get them to do something when they are being stubborn. Likely, there is much more at play than simple stubbornness. An outcome of the disease is the inability to initiate action. It is effectively inertia. People with Alzheimer's find it difficult to move from inaction to action.
Within a generation (25 years), the number of people living with Alzheimer’s disease or related dementia will be more than double, ranging between 1 million and 1.3 million people.
Tips for Getting Your Loved One to Participate in More Activities
Here are some tips that can help:
Try to understand why your parent is demonstrating this behaviour. It could be because they are feeling confused or anxious, or because they don't want to do something for fear of making a mistake. Sometimes they may feel unwell and need to rest.
If you can, try to accommodate your parent's wishes as much as possible. For example, if they don't want to do something because they are afraid of making a mistake, offer help and support. If they need time to rest, try not to push them too hard.
Next, try to talk to your parent in a way that is respectful and understanding. Let them know why you need them to do something, and explain the consequences if they don't cooperate.
Avoid power struggles. There is no point in getting into an argument with your parent. It will only make them more resistant to doing what you want. Be assertive but never aggressive as this will only make the situation worse.
Look for a compromise to the situation. If you are trying to get your parent to shower and they don't want to, perhaps offer to help them shower at a time when they are more comfortable. Or maybe, they would prefer a bath or be willing to just wash their face and hands, and then you can try again later.
Break bigger tasks into smaller ones. If you are trying to get your parent to go for a walk, start by asking them to take just one step outside. Once they have done that, encourage them to take a few more steps. before finally walking around the block. The same technique can be used when trying to get them to take their medication, eat a meal or do any other task.
Finally, consider letting it go. Look at the task that you are wanting them to do and ask yourself if it is that important. Sometimes, it is better to just let things go and not stress out over small things.
Be patient and keep trying. Dementia can make some people more resistant to doing things, but that doesn't mean you should give up. Persevere and eventually, you will find a way to get them to cooperate. More information is available on dementia caregiver stress.
Common Behaviour #4: Anger
In our work, we see families who are dealing with very difficult emotions and behaviors. Not often, but occasionally, these emotions are more than anger and frustration and become abusive. Here are three experiences that tell the story.
My mom was the sweetest woman. She was always so kind and generous, active in her church and at my school when I was young. But now, her dementia has caused her to change and I can hardly see the woman she once was. She's always angry, screaming at me and my father. I don't know how to handle it when she gets like this and it scares me. I was visiting my mom one day when she started getting mad at me for something that I didn't even do. She was yelling so loud that the nurse came in to see what was going on. It was embarrassing and really scary.
My husband is so angry all the time. Since his Alzheimer's has progressed, he seems to have lost the ability to reason. He is often suspicious. Last week he thought the postman was a thief and lashed out at him. He might have hit the poor man if the screen door hadn't been shut. I am not sure what to do.
I'm worried about the changes I am seeing in my mother even though it is my father who has dementia. She is so stressed and frustrated. I know my dad can be difficult, maybe even impossible, to deal with. When I was visiting yesterday, she couldn't get him to take his shower. She started twisting his arm to make him go upstairs. I'm worried that she is so angry that she feels physical force is the only way to get him to respond. Is there help?
How to Deal with Abuse
If you find yourself relating too well to these scenarios, take action. What can you do when dementia causes a loved one to become abusive?
Make sure you are safe. If your loved one is becoming physically or verbally abusive, remove yourself from the situation until they have calmed down. Make sure there is someone there to help if needed.
Speak with your doctor. There may be medications or treatments that can help lessen the anger and aggression. You don't have to suffer in silence.
Seek dementia care services. A professional care team can provide relief for you and give you some much-needed respite. They can also help manage difficult behaviors, providing support and strategies for how to best deal with them.
Join a support group. Sharing your experiences with others who are going through something similar is incredibly helpful. It allows you to vent, get advice, and feel less alone.
No one should have to deal with abusive behavior from a loved one who has dementia. If you are feeling overwhelmed, scared, or just need help. Reach out.
When Your Spouse Becomes Your Dementia Patient
When dementia affects a spouse, it can change the entire dynamics of the relationship.
My husband was diagnosed 3 years ago and I am his primary. Our relationship has changed so much. We don't talk and even if I ask him a direct question, he only gives a one-word answer. There is no conversation anymore. I am living with a ghost. I am not in love with him anymore and honestly, I don't even like him very much. Worse, I don't like myself when I have these terrible feelings. I would never leave him. We pledged for better or worse, but this is so much worse than I ever imagined. Is this normal?
This is a very difficult situation to be in. It is normal to feel many different emotions, including sadness, frustration, and anger. It is important to remember that your spouse is still the same person inside, even though they may act differently now. Try not to blame yourself or them for how things have changed.
Tips For the Spousal Caregiver
There are some things you can do to help make things easier:
Talk openly about how you're feeling with someone else who understands what you're going through. This can help get rid of feelings of isolation and loneliness.
Seek out support groups specifically for dementia caregivers. This can provide practical advice as well as emotional support.
Take care of yourself both physically and emotionally. Make sure you get enough sleep and eat a balanced diet. Find time for yourself to do things that make you happy.
Get help. A respite caregiver can provide tremendous relief, both physically and emotionally. They can give you a break so that you can recharge and focus on taking care of yourself.
Over 70,000 of people with dementia are under the age of 65, and approximately 50,000 are under the age of 60.
Do You Need Help at Home for Your Loved One with Dementia?
Choice Dementia Services has been providing high-quality, compassionate in-home care to seniors diagnosed with dementia and their families since 2016. Our team of caregivers is dedicated to helping you live happier, healthier lives at home. We are trained professionals who are ready to help with any task from housekeeping and meal prep to personal hygiene and transportation. And we offer 24/7 emergency support and respite care and always put your loved ones first.
You can trust us with your loved ones because we understand the importance of creating a safe environment where they feel comfortable living. We know that every person has unique needs – which is why we customize each care plan based on what matters most to them and you so they can stay true to themselves as long as possible without sacrificing quality of life along the way. Whether it’s getting groceries delivered right outside their door or having someone come by twice a week for an afternoon chat, Choice Dementia Services will make sure your loved one feels happy and cared for at all times during their time with us.