On today’s episode, we are talking about what you should and shouldn’t do while visiting a loved one with dementia. Dementia can take so many things away from us and our loved ones, but we shouldn’t let it take away time. Today we will be discussing how you can ensure you have a successful visit if your loved one is in a facility, as well as what you should and shouldn’t do when visiting. We will also be focusing heavily on the importance of visiting a loved one with dementia. Now let’s move on to the rest of the show.

 

Visiting a loved one with dementia may seem scary to you and to others that have been close to your loved one. Visiting doesn’t have to be scary, though. It is often a rewarding experience for both the visitor and the person with dementia. It is our hope that this episode, as well as our podcast as a whole, can help give you the tools to have a successful visit and end the stigma around dementia.

 

If you have been listening to our recent episodes, you will have noticed that we have been talking a lot about dementia and Alzheimer’s. That is because we believe that the more educated people are on the subject, the closer our society and communities will be to becoming dementia-friendly. As the aging population increases, we are also going to be seeing an increase in dementia cases. As of the release of this episode, there is no cure for dementia. There are treatment plans, but dementia isn’t something that is going to go away in the near future. Taking the steps to establish dementia-friendly spaces in our communities now can help our loved ones, and even ourselves when the time comes.

 

Whether you are planning on visiting a loved one in a care facility or having visitors come to you, it is best to be prepared. Preparing for a visit is the first step of having a successful visit. Learning about dementia is a good first step before visiting a loved one with dementia. Our recent series on the seven stages of Alzheimer’s is an excellent place to start your learning, too. You can find all of our current and past episodes of our podcast on our website, our YouTube channel, or on any of your favorite podcast streaming platform.

 

If your loved one has recently moved into a care facility or is going to make the move to a care facility soon, there are a few things you can do to make their transition easier. The Family Caregiver Alliance says that during the first two weeks, visit often and stay as long as you want. If the facility has a policy of not allowing visitors for the first two weeks during the adjustment period, consider whether this is the right facility for you. In some cases, visiting may make the transition harder on someone with dementia, so make sure you talk to your doctor and the facility staff to determine what the best course of action is for your unique situation.

 

After you have chosen a care facility for your loved one, get to know the staff. They are the ones that are going to be caring for your loved one on a daily basis. They are also going to be the ones you will need to talk to for updates on your loved one and if any problems arise. Having a good working relationship with the staff can lessen some anxieties you may have about your loved one being surrounded by strangers.

 

Moving into a facility can be scary for your loved one. If they seem nervous or upset about the move, try to cheer them up by decorating their space, because this is their space. Putting up familiar decorations, pictures, blankets, and other comfort items they own can help them feel more at home in their new environment.

 

Family Caregiver Alliance also says that if your loved one is agitated about the move, have a story you use consistently about why he or she has to stay there “for a little while,” such as:

“The house is being painted and I don’t want you to smell the fumes.”

 

“I need to have a minor medical procedure and I can’t take care of you while I am recovering.”

 

“I am having some termite work done on the house, or”

 

“The city is fixing the sewer.”

 

This is to help with diverting their agitation away from the situation and refocus on something else.

 

If you are unable to divert your loved one’s attention with these fiblets, change the subject and discuss the latest ball game, the weather, politics, the grandchildren, etc.

 

When you first come in for a visit, introduce yourself to your loved one. For example, I would say, “Hi, Dad, it’s me, Lance.” Saying your name instead of your relationship can help avoid unnecessary confusion for your loved one. If calling them Mom or Dad upsets them, address them by their name, instead.

 

It’s not unusual that your loved one will tell you that they want to go home during your visit. Usually, when your loved one says they want to go home, they are really conveying that they are not yet comfortable in their new environment, and that’s totally normal. It can and it will take your loved one some time to adjust to their new place of residence. To avoid fighting about not being able to go home, ask them what they like about their home or ask them to tell you about their home.

 

After about two weeks, you can start decreasing the amount and length of visits. Instead of visiting every day, visit every other day and so on. Bring treats and things to do with you on your visits. You can bring their favorite dessert, a favorite game, or even a few photo albums. Your loved one will be excited to have gifts and it will give you a purpose for your visit. It can also be helpful to have a list of things you want to talk about, as your loved one most likely will not be able to give you conversation topics.

 

Once your loved one is settled in their new environment, you can go for a walk around the facility. Getting out of their room can help improve their mood even after your visit has ended. If the facility allows it, and if your loved one will not become confused or experience an outburst of negative emotions, you can even go on an outing outside of the facility. Many people enjoy going to a favorite lunch spot or park. Make sure you clear any outings with the facility first, though. Every facility will have their own policies and procedures and can be dependent on the type of facility they are living at.

 

You can continue to shorten your visits after the two week adjustment period. According to Family Caregiver Alliance, the person with dementia usually doesn’t remember if you have been there for five minutes or five hours. Ultimately it’s better to visit three times per week for 20 minutes and eventually once a week for an hour.

 

Once your loved one is adjusted to their new residence, encourage others to visit them. Bring one of your loved one’s friends along with you if they are nervous to visit by themselves. Limit visits to two people per visit to not overwhelm your loved one. You can also start a visitor’s book for everyone to sign if the facility allows items to be left in your loved one’s room.

 

The Alzheimer’s Society says that it can become difficult for a person with dementia to remember all the comings and goings in their day. By creating a visitor guest book, you can help the person you’re visiting to remember who has come to visit and how they spent their time together. Guest books can also be good conversation starters for other visitors and for the person with dementia to remember everything that has happened in their day.

 

A guest book can be an inexpensive notebook or a journal that is kept in a central, obvious location in the home where visitors will easily locate it (such as by the front door). Though it is best if the guest book is made so the person with dementia can enjoy it to the fullest, the following information should always be included: the date of visit, the visitor’s name, how you spent your time together that day, and when you will come again (try to be as specific as possible).

 

The Alzheimer’s Society also has two examples of what entries in a visitor book can look like. The first states the date on the first line. The first example is from a service worker or caregiver.

 

Dear Joanne,

 

This is your home care worker, Anthony. Today, I came around 3:00pm to do the laundry and I made your favorite, mashed potatoes with broccoli and chicken for dinner.

 

It was nice talking to you today about your husband, Jerry, and your dog, Pepper.

 

I will be coming back on January 26th, at 3:00pm.

 

See you in a few days.

 

Anthony

 

The second example is from a friend or family member.

Date: April 12, 2015

 

Hi Dad,

 

This is your daughter Aisha; I’ve had a nice visit with you today at 1:00pm. We shared a tasty lunch together and had a good walk around the neighborhood. We passed the convenience store where you told me that you used to buy your lottery tickets every weekend.

 

I will come on Wednesday, April 15th, for lunch time at 12:00pm. I will bring lunch so we can eat together at home. See you then.

 

Love you!

 

Aisha

 

You can find a link to these examples in our show notes if you would like to see how they are written out. We have done a few episodes on ways to talk to a loved one with Alzheimer’s and other forms of dementia in the past. There are tips and tricks in those past episodes that we don’t mention today and vice versa. You can check out our Dementia and Alzheimer’s playlist on YouTube for a complete list of episodes we’ve done covering dementia and Alzheimer’s.

 

Minimizing distractions can help you have a more productive visit. Try turning off the tv or any music that’s playing. Completely removing distractions in a facility may be an impossible request, but you can reduce distractions as much as you can. If you are visiting your loved one in a common area, make sure your loved one is facing away from any walkways so they will be less distracted by people moving around them.

 

If you are visiting your loved one in their room, it is much easier to limit distractions. Make sure to notify staff that you are visiting with your loved one so that they may avoid unnecessary interruptions. You should also learn your loved one’s schedule and come at a time when they are less likely to be distracted or busy. Try to visit during free time and not during an activity, as well.

 

DailyCaring has a few essential do’s and don’ts for visiting someone with dementia. Do keep your tone and body language friendly and positive. Don’t speak too loudly. Do make eye contact and stay at their eye level. Don’t say “do you remember?” as this can cause anger or embarrassment. Do speak slowly and in short sentences with only one idea per sentence. For example: “Hi Mary. I’m Jane, your friend.” or “What a beautiful day. The sunshine is nice, isn’t it?” or “Tell me about your daughter.”

 

Don’t argue. If they say something that’s not correct, just let it go. Do give them extra time to speak or answer questions and use open-ended questions because there are no right or wrong answers. Don’t point out mistakes. It just makes them feel bad and doesn’t help the conversation. Do be ok with sitting together in silence. They may enjoy that just as much as talking. Don’t assume they don’t remember anything. Many people have moments of clarity and assuming they don’t remember something when they do it can hurt their self-esteem.

 

Do follow their lead, don’t force conversation topics or activities. You should come prepared with an activity, like something to read out loud, a photo album to look at, or some of their favorite music to listen to, though. They may enjoy whatever you brought with you, but make sure you listen to what they are telling you through your time together.

 

Don’t take mean or nasty things they say personally. The disease may twist their words or make them react badly out of confusion, frustration, fear, or anger. At the same time, make sure you validate their feelings. Allow them to express sadness, fear, or anger.

 

Do enter their reality. Go with the flow of the conversation even if they talk about things that aren’t true or don’t make sense. If there are other people in the room with you, don’t talk about your loved one with them as if they’re not there. Most of the time, your loved one knows when you are talking about them, even if you don’t realize it. Always honor and respect their dignity.

 

Lastly, Do share and discuss memories of the past. Your loved one is more likely to remember things from long ago than they are things that happened recently. You can also show affection by giving hugs, gentle touches, or massaging their arms or shoulders, with their permission of course.

 

A simple touch can be a great way to convey feelings of fondness and is a good way to communicate without talking. If your loved one has trouble making conversation, which they may during the later stages of Alzheimer’s, they may still be able to communicate through touch. Touch and feeling is often a form of communication that outlasts the ability to comprehend conversations and words.

 

As we mentioned earlier and is reinforced by HealthCentral the most important thing to remember before you visit is dignity above all. If you keep that in mind you really can’t go wrong. Put yourself in this person’s place. How would you like to be treated if you had lost your ability to find the right words to communicate, make sense of what others say, swallow whole food and use the toilet? Before you visit, give this serious thought. Your instincts should guide you with the rest.

 

According to Alzheimer’s.net, a recent survey found that 42% of the public think it’s pointless to stay in contact with loved ones who have Alzheimer’s after they are unable to recognize the faces of family and friends. Alzheimer’s advocates and researchers caution against this line of thinking, saying that even as the disease progresses, people with advanced dementia can still hold an emotional memory, meaning that they remember how something made them feel long after they have forgotten the event that brought those feelings. Another survey found that more than 50% of people with Alzheimer’s were not participating in social activities and 64% said they felt isolated after receiving their diagnosis.

 

VeryWell Health tells us that research has demonstrated that it’s not just the memory that matters here; it’s also the emotion created by a positive visit. What’s important to note is that the positive emotion from an encouraging and supportive visit can last much longer than the specific memory of that visit.

 

You may have impacted that person’s whole day by changing her feelings and behavior. Although she might not be able to recall that you visited her, the feelings you created in her can change how she interacts with others and improve her mood.

 

Next time you think it doesn’t matter, think again. The benefit of your visit might last long after you’ve gone.

 

The holidays can be a time of dread for some when it comes to visiting our loved ones, but it is very important to visit our loved ones with dementia. As we get closer to the holiday season, make a plan to visit your loved one and include them in any festivities you can. Chief Executive of the Alzheimer’s Society, Jeremy Hughes, states “After spending time with friends and family over the festive period, New Year can be a bleak and lonely time for people with dementia and their caregivers. It’s so important for people with dementia to feel connected throughout the year. Spending time with loved ones and taking part in meaningful activities can have a powerful and positive impact, even if they don’t remember the event itself. We’re urging people to get in touch with us and find out how we can help you stay connected.”

 

The holidays can be stressful for your loved one, just as they can be for you. Not being able to participate in traditions they used to be able to can be upsetting and make them feel left out. These feelings can cause them to have outbursts and you and other visitors may feel less inclined to visit with them if you are constantly on edge and expecting a burst of anger.

 

Next Avenue and Caring.com both tell us not to be overly afraid of outbursts, either.

 

Sometimes we are so afraid of a person with dementia having an outburst that we shut down ahead of time and miss the opportunity to connect.

 

According to Korner, a dementia care specialist, “Don’t be afraid of listening to their negative feelings. It doesn’t necessarily mean things will escalate. You can empathize. If the conversation makes the visitor uncomfortable, then redirect the conversation. Ask permission to talk about something else. Say, ‘I’m hearing this is upsetting to you, so would you mind if I change the subject and we talk about an issue I’m having?’”

 

“Or get up and physically move, and make up a reason if needed,” says Korner. “Say, ‘I have a cramp in my leg, would you mind if we walked a little?’ Sometimes a quick change of scene or allowing time for the person to calm down if they get angry can quickly change the person’s mood. The good news is that even if they get angry, they may not remember it a few minutes later, so why should you hold onto it?”

 

We have already talked about not judging your loved one, but Korner also says not to “judge yourself too harshly, either. It’s not like any of us are prepared for the challenges you face trying to connect to a loved one with dementia. It’s not like you go to school for this. But you need to accept it and get up to speed as fast as you can when you’re faced with the situation.”

 

We hope this episode has helped you see the importance of visiting a loved one with dementia, even after they may no longer recognize who you are. You can use the do's and don’ts we discussed today to ensure you have the best visit possible with your loved one. And you now know that if your visit doesn’t go the way you have planned, it’s okay. You will try again next time and not worry about the previous visit. Send this episode to those who wish to visit your loved one so that they can properly prepare for their visit, as well.

 

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 there 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 make sure to 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. We look forward to seeing you next time on All Home Care Matters, thank you.

 

Sources:

https://www.caregiver.org/resource/residential-care-options-visiting-someone-dementia-care/

 

https://alzheimer.ca/en/help-support/i-have-friend-or-family-member-who-lives-dementia/making-meaningful-visits

 

https://dailycaring.com/visiting-someone-with-alzheimers-dos-and-donts-for-visitors/

 

https://www.healthcentral.com/slideshow/7-pitfalls-avoid-when-visiting-someone-dementia

 

https://www.alzheimers.net/2-24-16-loved-ones-with-alzheimers-benefit-from-visits

 

https://www.verywellhealth.com/tips-visiting-people-dementia-97960

 

https://www.nextavenue.org/visiting-someone-dementia/