A growing concern for older adults is the fear of developing a form of dementia, including Alzheimer’s. People fear they will lose their independence, their memories, and possibly their sense of dignity and self.
With no cure in sight, and medications currently being prescribed that are only able to help with some of the symptoms, some of the time, and for some of the people, this is a valid concern. But what if it isn’t you that develops a form of dementia? What if it’s a friend of yours, a neighbor, or a member of your faith community?
When a person develops dementia, it doesn’t change who they are. But there will be a few changes that they can’t control, so I’ll give you some tips to help with that. To get a better understanding of what is happening for them, the simplest way to describe it is to say that different parts of their brain are failing. Chief among these changes are:
- Language comprehension: being able to take in the words you hear and make sense of them
- Speech production and vocabulary: having an idea in mind, choosing the right words, and expressing this idea clearly
- Sequencing: being able to start a task, go through the various steps we have done for years, finish, and then move on to something else
- See another person’s point of view
One of the reasons my approach is called the Positive Approach to Care is that I don’t want to focus only on what’s lost. I want my focus to be on what skills and abilities remain and where I can support someone. Here are a few things that remain:
- Rhythm – music, poetry, prayer, and counting are wonderful tools to connect with someone, even in the later stages of the condition
- Social chit-chat and rhythm of speech – a person living with dementia can often keep the skills of knowing that a conversation is I share, you share and back and forth we go. In addition, your friend will likely know when you’ve asked a question – the trick is making sure they know what you’ve asked
- Strength – while dementia can often rob someone of their physical skills, they generally keep that strength. Let’s use that to our (and their) advantage
- Memories – most of the memories a person has will remain, however the pathways to retrieving them are often destroyed. Connecting with a person and offering cues can often build a temporary bridge that helps your friend find those memories
Here are five tips for you to help your friend continue to live a life filled with meaning and joy.
1. Stay friends, stay connected
You wouldn’t end a friendship because your running buddy broke her leg, right? You wouldn’t end a friendship because your golfing buddy hurt his back, right? Sure, you may have to make some changes from your normal routine, but you can still enjoy one another’s company. The same is true for a friend living with dementia. With a few possible changes in communication and subtle changes to activities, you can help them in many different ways.
The old adage of use it or lose it is especially true when a person is living with dementia. We don’t want to do things for them, but we want to offer the support that allows them to do as much for themselves as possible. Being social, participating in activities, and being active not only helps them preserve what they have, it also helps them keep their sense of dignity and sense of self that many people fear losing.
2. Make specific offers to help
If there’s anything I can do, please let me know. Who among us hasn’t said those words to a friend or loved one when they’re going through a difficult time? Most people living with dementia, especially in the early to middle states of the condition, are living at home with their significant other as the primary caregiver. As the primary caregiver, it can be hard to know what to ask for, or they may feel guilty asking at all. If you were to offer something specific, something tangible, it is much easier for the person to accept your help.
For instance, if you were to offer to come over twice a week and lunch with your friend, it not only gives your friend something to look forward to, it allows their significant other a little time to themselves to regroup.
What are some things you can do with your friend regularly? These don’t need to be new activities; think about what your friendship has been all about. Going for a walk, playing games, or enjoying a cup of coffee are just some of the options out there.
3. Communicate using fewer words, more visuals
As mentioned earlier in this piece, one of the skills that tends to be affected by dementia is the understanding and production of words. Conversations can still be had, but pay attention to your friend to make sure they are following along with you.
- Use fewer words at once and allow more time for your friend to process what you said before starting something new
- Try to avoid saying Don’t you remember? Or Remember me? Instead of checking their memory, it is helpful to provide them with words to draw on. Hey Johnny, it’s Dan. How are you? can feel better than Johnny, remember me? I’m your friend.
- Use visual cues when you can. For instance, if there is something you want them to look at, point to it while saying what it is. If you want them to come with you, wave them along. If you are offering them something to eat or drink, show them the options.
- Offer two choices instead of an open-ended question. If you want to know what your friend wants to do, don’t just ask what do you want to do? Even with a healthy brain, most of us answer that with I don’t know, what do you want to do? Instead, if you offer two preset choices, your friend will have an easier time picking one. Would you rather go for a walk or get lunch? Would you prefer coffee or tea? Would you prefer pie or something else? If you aren’t sure what the second part should be, using the phrase something else allows you a little more wiggle room.
4. Choose a place with less noise
When a person is living with dementia, it can be difficult to isolate and discriminate sounds and voices. A loud environment like a busy restaurant, a crowded street, or other areas with a lot of commotion can feel overwhelming. As the condition progresses, fewer people together at a time tends to be helpful, so your friend only has to focus on one or two things at a time.
5. Grieve while away from your friend
There will be times when you miss the friendship you once had. You may miss the antics you once got up to, you may miss the witty repartee, or you may just feel bad for your friend. No matter what, it is important that you save your outward expression of these feelings for when your friend isn’t there with you. While dementia may rob your friend of certain skills and abilities, they will still be able to know how you make them feel. I don’t often tell people what not to do, but one thing is for sure, never talk about your friend as if they aren’t there. They are still there, they still hear and feel you, they are just a little different.
Different, yet worthwhile
When a friend of yours is living with dementia, it can be hard to know what to do. Your friend may be afraid of the judgement of others or from you, but using these tips can help you both find joy and happiness. Yes, things may be a little different than they were before, but they can still be worthwhile. You have the opportunity to help your friend be less afraid and find a more meaningful life despite living with a difficult condition. Will you take it?
Teepa Snow is a leading advocate and educator for people living with dementia or other forms of brain change. Snow is an occupational therapist with over 40 years of clinical and academic experience. Her company, Positive Approach to Care (PAC), was founded in 2007 and is now collaborating to improve dementia care in over 30 countries world-wide. Her latest book, Understanding the Changing Brain: A Positive Approach to Dementia Care is out in fall of 2021.