Today, we are talking about how to talk with your children about their grandparents with dementia. First, we’ll discuss what dementia is and how it affects the whole family. Then, we’ll talk about a few ways to approach the subject with your children. After that, we’ll dive into ways your children can interact with a loved one with dementia. Finally, we’ll end the episode with questions and answers by and from real families experiencing dementia. Now let’s move on to the rest of the show.

 

Dementia affects millions of families each year. According to the World Health Organization, there are 10 million newly recorded dementia cases each year. Worldwide, five to six percent of all individuals over the age of sixty have some form of dementia and that number goes up with age. One-third of all adults over the age of 85 have some form of dementia. If you have a loved one with dementia, it may be helpful to know that you are not alone. Dementia and other cognitive health diseases are tough for the entire family, not just for the patient and their caregiver. That is why we have decided to talk about dementia and how it affects grandchildren today. We hope that today’s episode can help give you a few ways to talk to children about their grandparent’s diagnosis.

 

The National Institute on Aging says that dementia is the loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person's daily life and activities. Some people with dementia cannot control their emotions, and their personalities may change. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person's functioning, to the most severe stage, when the person must depend completely on others for basic activities of living.

 

We have talked in depth about dementia before, so we won’t be defining it further today. If you are interested in more information on dementia, you can check out our YouTube channel, where we have an entire playlist dedicated to dementia and Alzheimer’s. You can also visit our website for even more episodes and resources.

 

Your loved one with dementia may go through a number of behavioral changes, mood swings, and loss of both social and motor skills, and most of these will worsen as time goes by. Watching your loved one’s mental state slowly deteriorate over time is difficult and something no one ever wants to have to do. Visiting with a loved one with dementia can help improve their day and their mental capabilities. Many families are anxious to visit their loved ones after a dementia diagnosis has been made, especially if they have children. They are worried that their children may accidentally set off their loved ones, or that their loved ones may not remember them.

 

Seeing our parents’ health decline is hard on most of us, and dementia makes it even worse. Caregivers in a memory care facility stress the importance of visiting loved ones with dementia, even if it is difficult. They’ve seen family members come from hundreds of miles away to bring something that their loved one with dementia needs, such as medication or paperwork, but they are unable to stay and visit because it’s hard for them to come to terms with their loved one’s current state. One caregiver says that if only the families realized what a difference it makes, they would want to come more.

 

Visiting a loved one in a facility is tough, and depending on how far away the facility is, it can be an all-day event. When your loved one is in a facility, even if you visit every day, you may notice changes every time you visit. When your loved one is living with you, you also notice changes, but most of them are gradual and it isn’t something you notice every time you look at them. Your loved one’s changes can way heavy on your mind, too, but one thing that should help to ease some of the stress is knowing that they are getting the care they need while living in a facility. These special memory care facilities are devoted to caring for patients with dementia and other cognitive health diseases and issues. The staff are trained to handle any difficult behaviors that may arise, and they are always there to provide comfort and care, and another option many families choose for their loved one is for them to remain in their home for as long as possible. The benefit to that choice is that their home is familiar to them and provides them with a sense of security and comfort and the care they receive from a professional home care provider would be specific to them, which helps with their care.

 

Deciding that you alone are not enough to take care of your loved one can be a frustrating decision to make but is ultimately better for your loved one. Dementia is not something that gets better with time and can go away, it sadly only gets worse. Dementia affects the entire family, not just your loved one with the diagnosis. If your loved one becomes hostile, they can make your home be somewhere that you and your family dread going back to, and that’s not how you want you and your family to live. Sometimes if their behavior is more aggressive then a facility is the best option for your loved one and your family. In a facility, you can make sure they are safe and watched over at all times, and you don’t have to worry about how their mental state and behavioral changes will shape the day.

 

Now that you know a little about what dementia is and how it affects your loved one and the family as a whole, let’s move on to ways to talk to children about dementia.

 

Haley Buress, writing for Lotsa Helping Hands says that teaching your kids, or other children in your family, about dementia, can be challenging. However, it can also be a positive shifting point in their relationship with their grandparent. Knowledge is power, right? So empower your kids by learning how to teach children about the dementia process.

 

Kids are inquisitive by nature, and they are sure to ask you questions about their grandparents and the changes they are noticing in them. Their questions can be a great start to a conversation on dementia and how it will be affecting their grandparents in the not-so-distant future. When your child brings a question to you, try to answer it as best as you can using age-appropriate terms. If they ask you why their grandparent doesn’t remember one of their favorite things, you can take the opportunity to tell them that your loved one will have problems recalling information and that it will not get better, but that it will only worsen as time goes on.

 

Telling them that their grandparents memory is only going to get worse will help them understand why their grandparent can no longer remember more important things, like their name, as their dementia worsens. You may want to shield your child from what is happening and protect them from any hurt their grandparents loss of memory may cause them, but you would be surprised how understanding your child can be and how much they can actually handle. Of course, you know your child best. You should use your best judgment when talking to your child about their grandparent with dementia. You probably wouldn’t tell your six-year-old the same thing you would tell your seventeen-year-old, but every child is different, and you are the one that ultimately decides what to tell. Our hope today is to give you the helpful information you will need to have a dialogue with your children when they ask you “What’s wrong with grandpa?”

 

The most important thing you can do is tell the truth. Don’t lie to your child and tell them that nothing is wrong and that they will get better, because something IS wrong and they WILL NOT get better and your children will know, regardless of what you tell them. Not telling them or lying to them will make them feel like you don’t trust them enough to tell them what’s really going on or they may be upset and feel like no one is listening to what they are saying if they ask you what’s wrong with grandpa and you repeatedly tell them that nothing is wrong.

 

Buress also suggests that depending on your child’s age, you can pull age-appropriate literature from your local library or the Alzheimer’s Association to help start a conversation or give a new point of view. Older kids can get a lot of information from books such as Still Alice or Dancing with Rose. Younger kids can enjoy books like Still My Grandma or The Memory Box. With younger children, consider reading the book and then following up later with a coloring session or puppet show that the child leads. It is often in these moments of free play that a concern or question finds its way out.

 

It isn’t easy to tell your kids about dementia, especially since you are likely in the middle of many different emotions yourself. Being a parent is hard work, but with a little honesty and vulnerability, you can find beauty in even this situation. Watching the intergenerational relationship between your kids and parents will last well into the dementia process and will be a gift to everyone.

 

When you are having the initial conversation about dementia with your child, make sure you tell them that nothing they did is why their grandparent is sick with dementia and that they also cannot get dementia or memory problems from their grandparent. It is still safe to visit, and they should visit!

 

Make sure your child knows that any feelings they are having when it comes to dementia and their grandparent are valid. If they are depressed, anxious, or confused, they can tell you and you can both talk about why they are feeling that way and discuss ways that can help them understand and conquer their feelings. For more help on how to talk to your child about dementia, check with your local Alzheimer’s Association. They may have support groups that can be helpful for you and your child. If your child is really struggling with this concept and doesn’t want to open up to you about it, a support group may help them more. They may have trouble telling you because of your closeness to the situation, but they may be able to talk to someone they don’t view as being a part of their life.

 

Now that we’ve gone over some ways you can talk about dementia with your child, let’s move on to ways your child can interact with a loved one with dementia that is beneficial for them both.

 

A Winchester Health article says that your child may be feeling left out and lonely from all the attention the grandparent needs to receive. Therefore, be sure to involve your child in the grandparent’s care during visits. Setting limits and boundaries before the visit will help reassure your child, too. For example, set a time period for the visit and schedule them regularly.

 

Tell your child that if their grandparent becomes upset, you both will leave and come back another time when they are not upset. Before your visit, talk about what they may notice their grandparent doing during the visit. Let them know that they may not do things the way you think they should be done, and that’s okay. Talking about this ahead of time can help reduce your child’s unexpected reactions to changes in their grandparents’ behavior.

 

Even though their grandparent has dementia, they may still be able to enjoy activities with their grandchild. If your child has any activities they look forward to doing with their grandparent, they can most likely still do those things together, but if you need a few ideas on what your child and loved one can do together, we’ve got a few for you.

 

They can play a musical instrument together. If your loved one has a piano, they may enjoy playing it with their grandchild. And playing music may bring back happy memories for them. They can read a book or a magazine together. Your child can bring their favorite book with them during their visit. They will be excited to show it to your loved one and patients with dementia usually react well to excitement. Coloring is another easy activity that they can do together, especially if your loved one is bed bound. Make sure that you don’t correct your loved one when they are coloring. If they make the grass purple, don’t tell them that that’s not what grass looks like. You may accidentally upset them and have to end the visit early.

 

They can play a favorite board or card game together. Games can also help your loved one exercise their mind, which can potentially help strengthen their brain. If your loved one needs a drink or a snack during your visit, let your child get it for them. Being able to accomplish a task that helps their grandparent on their own will give them a sense of satisfaction and help build their sense of compassion. Your child may be cautious about hugging their grandparent, but you should encourage them to hug. Your loved one will really appreciate this show of love and it is a way for them to communicate their own love for their grandchild when words become difficult for them. After your visit, offer to answer any questions your child may have about the time spent together. If you don’t know the answer or don’t know how to effectively answer them, let them know that you don’t know, but that you can figure out the answer together.

 

In an article for AgingCare, one grandson of a grandparent with dementia gives his take on what to do with a grandparent with dementia. He says that he’s learned to adapt as he goes. He’s learned to avoid asking questions that his grandmother won’t know the answer to and says he’s gotten good at shifting the conversation quickly to distract her from tricky things or topics that upset her. Even if you say something wrong, it’s okay. Just learn from it and try to redirect them to something happier. They will likely forget the incident in a short time.

 

He also says that it really helps if he uses his grandmother’s own words and phrases to describe things. She recalls the information better that way. For instance, if he says the name of the café they go to all the time, she doesn’t remember it. But if he refers to it as “the one with the steps to the courtyard outside,” she remembers straight away. Try to find small things like this that can simplify and improve communication.

 

Some days are better than others. On days where she’s having more trouble remembering things, he says that it’s good to make his grandmother feel like she’s not forgetting too much and reassure her that it’s okay. When she can’t remember a name, event, or detail, he acts like anyone could forget such a thing and tells her it’s not a big deal. Sometimes you have to play down pretty major things to help a dementia patient feel a little bit better.

 

He says he still likes spending time with his grandmother and that they were very close when he was little. Now, he gets lots of hugs from her, and she’s very adoring. He thinks it’s absurd, but it’s also kind of nice.

 

Most of our ideas for this episode have been geared toward younger children, but we’re hoping this real-life account by a teenager can help those with older children see how other families are navigating life with a loved one with dementia.

 

Now that you know some ways that your children can interact with their grandparents with dementia, let’s move on to our final section for the episode, which is questions and answers by and for families that are dealing with dementia.

 

For this last section, we’re taking a look at a question posted by a 7 cups user on their question-and-answer forum. 7 Cups is an on-demand emotional health service and online therapy provider. For more information on their services, visit their website at 7 cups dot com. You can also find a link to their website in our show notes.

 

The user-posted question we’re looking at today is My grandparent has dementia. How do I deal with this? What can I expect?

 

The highest-rated response is dementia symptoms vary but usually include a loss of memory, difficulties in communicating, and personality changes. If you love your grandparent, and I am sure you do, seeing him decline in these ways will be very challenging and you may find that you feel helpless and sad. These reactions are normal. Joining an Alzheimer's disease or dementia support group can help you cope with your feelings and can be very beneficial. Regarding your grandparent, the best approach to helping him is to be a good listener, be supportive and positive, and reassure him that he can still enjoy life regardless of the changes he is experiencing.

 

Another good response we found was that the most important thing to remember about verbal or physical aggression is that your grandparent is not doing it on purpose. Aggression from dementia is usually triggered by something—often physical discomfort, environmental factors such as being in an unfamiliar situation, or even poor communication. This is what you have to expect. Harsh responses. You have to try to cope with him, understand him, don't let yourself be offended or hurt.

 

Another user suggests making the most of the times when they are lucid. Spend as much time with them as you can spare, particularly in the mornings- dementia is often much worse later in the evening when the sufferer is tired. Ask them to tell you stories about their past. Most people say that the thing they regret the most is not spending time with them whilst they're still lucid. Of course, there are going to be bad times and good times, and it does get worse as time goes on. Getting support from and supporting your family can be very important in the bad times.

 

One of the most helpful responses we found was to know more about what to expect, find out what condition your grandparent has that causes dementia, because symptoms and prognosis can vary widely. In general, people with dementia suffer from severe memory problems, can be very disoriented, cease to recognize loved ones and familiar places, and have challenges caring for themselves. Whatever happens, don't take it personally if your grandparent doesn't recognize you.

 

Avoid arguing and trying to reason with a person with dementia. Avoid treating them like a child. They may be confused, but they still deserve respect and dignity. Learn to respond to the emotions behind what your loved one says, not the facts. For instance, if they say they refuse to take a bath because they don't want to drown, they might really be trying to say that they want their privacy, or they're frightened, or even that they're afraid the bath will be too hot or too cold. Therefore, don't think of seemingly random things the person says as nonsense, but instead view them as attempts to communicate with you. There are many professionals, such as occupational therapists, who can help you with advice on how to help your loved one live as happily and independently as possible. If you are a caregiver, get as much additional support as you can.

 

One creative response that might not work for every situation says that his son coped with a grandparent who would repeatedly ask the grandson whether he had eaten. The grandson would smile and tell the grandparent that yes, he had eaten, and show a spoon as proof. He always carried a spoon in his pocket when he was home. Then he’d ask the grandparent whether she had eaten, and the grandparent would look content… until she asked once again if he had eaten. This approach may not work for everyone, but it shows that remaining calm and creativity works sometimes and is worth striving for. At least some of the problems that dementia creates may be reduced this way.

 

Everyone is different and every situation is different, but we hope that you have been able to use something from today’s episode to help you and your family navigate the problems that dementia comes with. For more information on dementia, check out the sources in our show notes and also visit our website for all the latest information on long term care issues and tips.

 

We want to say thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate these long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone who could benefit from this episode, please share it with them.

 

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Join us next time on All Home Care Matters where we will be discussing a topic that can be difficult and emotional at times and that’s “When Siblings Don’t Agree”

 

Sources:

https://lotsahelpinghands.com/blog/how-to-teach-children/

 

https://www.verywellhealth.com/helping-a-child-whose-grandparent-has-alzheimers-98005

 

https://www.7cups.com/qa-family-stress-23/my-grandparent-has-dementia-how-do-i-deal-with-this-what-can-i-expect-390/

 

https://www.who.int/news-room/fact-sheets/detail/dementia

 

https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis

 

https://www.familylives.org.uk/advice/your-family/grandparents/helping-your-grandchildren-understand-dementia/

 

https://www.winchesterhospital.org/health-library/article?id=998960

 

https://www.agingcare.com/articles/5-dementia-tips-from-a-grandson-212858.htm