What Do I Do Now? 8 Tips on How to Keep Your Spouse Engaged When Dementia is Present

What Do I Do Now? 8 Tips on How to Keep Your Spouse Engaged When Dementia is Present post page

By Dan BulgarelliJune 9th, 2021

What Do I Do Now? 8 Tips on How to Keep Your Spouse Engaged When Dementia is Present

Strategies for a more harmonious journey of dementia for you both
By Dan Bulgarelli
For many people living with dementia, their first primary caregiver (or care partner as we say at Positive Approach to Care) is their spouse. For many reasons, this is ideal as they are generally the one that knows the most about them, has a shared history, and there is a comfort when it comes to personal topics and care.

On the flip side, a spouse may have difficulty in other areas, but why? When it comes to day-to-day activities, we can often go on autopilot. We can get into such a natural routine, that we don’t have to think about what we are doing, let alone what our spouse is doing. When a spouse develops a form of dementia, that autopilot switch is turned off, and they may turn and ask What do I do now?

What do I do now? What am I supposed to be doing? Can you help me?

Routines are built up over time, and even if we are doing a shared activity, we may have separate tasks. After dinner, I clean up the table and put away the leftovers while you do the dishes. I mow the grass while you tend the garden. I carry the groceries in while you put them away.

When the routine is no longer routine, what can you do to help keep your spouse engaged? Here are eight tips to keep in mind:
1. Take a deep breath
I know it doesn’t sound like much, but trust me. Your first reaction when you hear those questions might be What are you talking about? We’ve ALWAYS done… but that’s the rub. Your spouse is trying, and if s/he doesn’t remember, it’s not their fault.

As Teepa says, Dementia doesn’t rob someone of their dignity, it’s our reaction to them that does. So take a deep breath, then move on to another tip.
2. Think about their job
What is it that they normally do?

Is it something they just need help getting started with or have their abilities changed to the point that they can’t do it on their own?

If they aren’t able to do it on their own, can both people do both jobs together?

Sometimes it can be a verbal request such as Can you get the water hot for the dirty dishes? As the disease progresses, you may need to use fewer words and more visual prompts.
3. Practice Positive Action Starters
This phrase is something Teepa developed as a more positive way to ask someone to do something.

You’re really good at this, will you help me?

I could really use a second opinion, could you take a look at something?

I just noticed something pretty neat, come take a look!

Most people want to be helpful or share in something interesting and are happy to join. On the other hand, what kind of reaction would you have if someone said something like You need to do this. You’re supposed to do that. Why aren’t you doing it the way you are supposed to?

Most people don’t care for that, regardless of dementia. Using words or phrases that can pique interest and provide value will almost always lead to acceptance.
4. Think about their GEMS® State – and yours
Our brains are in a constant state of change, whether or not we are living with dementia, and that will affect our abilities in any given moment.

When looking through the lens of dementia, Teepa’s GEMS State Model allows us to focus on what abilities are present in the moment, and helps us create ideas and activities that can be successful.

As a care partner, I also need to be aware of my GEMS State. If I am in what is called a Diamond State, I may be less able to accept things that are different than I expected and I may be more cutting in my reactions and responses.

Click here for more information on Teepa’s GEMS State Model.

Click here for videos
of Teepa discussing how to engage people in different GEMS States.
5. Think about what they enjoy
This one sounds like a no-brainer, but it might be a little tougher than you think. Yes, we all enjoy playing games, relaxing, and having fun – but we also like to feel productive and that we are contributing. I don’t want to kick my feet up while you do all of the work – you are my spouse, not my employee.

Make a list of things you know that I like, even if it needs to be done differently than it has been throughout our lives together. Some examples might include:

Gardening – if I have always loved flowers and tending to the garden, are there opportunities for me to do that?

Can you be okay if I pull flowers as if they are weeds? Can you bring flowers for me to arrange? Can you have flowers nearby for me to see and smell?

Music – one of the things that is retained throughout the journey of most forms of dementia is rhythm.

Music, poetry, prayer, and even counting can be a great way to keep engagement. This could include anything from dancing together to a radio station to sitting quietly and listening to instrumental versions of our favorite songs.
6. Be aware of energy levels
As we develop routines throughout our life, we tend to have a natural flow and balance of energy up and energy down.

As we get older, we tend to need a few more breaks than before. When dementia is present, a person may be less aware of the need for a break. It can also be difficult to transition from activity to rest or from rest to activity.

As the primary care partner, you not only have to watch your own energy levels, but be aware of your partner’s, too. This is a great time to use one of those Positive Action Starters we mentioned earlier – I need a break. How about we have a glass of lemonade and sit on the porch?
7. Build a team and do it early
For better or for worse, in sickness and in health, our spouses are often the person with whom we have spent most of our lives.

However, as dementia progresses, s/he will need more than you are able to give by yourself, and it is much harder to add in someone new later in the process.

Having a friend for lunch weekly, hiring a professional for a few days a week, or a visit at a local day center can allow your spouse to interact with others and allow you time to recharge.
8. Take time for yourself
You have probably noticed that we have gone through seven steps all asking you to do something different than what you may have been doing before. That isn’t easy for anyone. If you don’t take time for yourself, you will find your reserves waning.

Unfortunately, one of the leading risk factors for developing dementia is caring for someone living with dementia. If you don’t take time for yourself because you want to take care of your spouse, you may find that both of you are in a bind.
Caring for a spouse or partner that is living with dementia can be challenging. Remember to care for yourself, which may mean looking to build a team to support you as early as you can. Only when you have the support you need, can you be in the best state of mind to support the person you love.

And remember that self-care isn’t selfish. To say it with the words of L.R. Knost, “Taking care of yourself doesn’t mean me first, it means me too.”
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Interested in learning even more?
Listen to episode 96 of the Dementia Care Partner Talk Show Podcast with Teepa Snow on How to Keep a Person Living with Dementia Engaged:

3 Comments on “What Do I Do Now? 8 Tips on How to Keep Your Spouse Engaged When Dementia is Present”

  1. My husband Dries plays golf goes bowling plays pickle ball and pay checks out to people who need donation.
    He recognizes he has a blood disorder and goes to the cancer center every four months.
    Why does he get angry when anything is mentioned about MCI and refuses to go to the neurologist as it says there’s nothing wrong. Definitely short term memory.

  2. Maybe your husband would respond well to the reverse thought: that the neurologist may be able to evaluate and help like the hematologist is helping. The person making the suggestion for a neurologist could come from someone else besides you.

    It is taking my husband a long time to be cooperative in recognizing other people can help also.

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