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When people hear the word dementia, they often think of older adults, end-stage dementia, and long-term care homes. However, many individuals living with dementia can be much younger and are living well in their own communities. It is important to educate the community on what dementia might look like, challenge the stigma that surrounds it, and implement best practices for persons with FTD to live well. 

References

Alzheimer Society of Canada. (2018). Frontotemporal dementia. Retrieved from https://alzheimer.ca/en/Home/About-dementia/Dementias/Frontotemporal-Dementia-and-Pick-s-disease 

Mayo Clinic. (2016). Frontotemporal dementia. Retrieved from https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737 

Have you ever been in public and feel as if nothing is going right? For example, have you been in a restaurant and your loved one with dementia is saying something inappropriate or drawing attention? Have you ever felt embarrassed about a certain situation?

While it might feel like the whole world is looking at you and your loved one, this is a great opportunity to educate others about dementia and explain to them why the situation might have occurred. However, we know that some persons with dementia are not always comfortable disclosing their diagnosis due to the stigma that still exists. 

When we would take our grandmother out to a restaurant for dinner we wished we created a card that was discrete enough to share with others that her behaviours might have been a bit of the 'ordinary' because of her dementia diagnosis. We also wanted to thank people around us for being so patient and understanding during the situation. 

As a result, we have created a resource card, the size of a business card to share with others in public and inform them of dementia and use it as an educational tool. While many times we were unable to educate our server, cashier, or salesperson that our grandmother had dementia in that moment, we wished that we had something to inform them so that our grandmother did not feel uncomfortable.

By sharing a dementia diagnosis with the public and people working in customer service, this helps to educate society and inform people of ways that we can better support persons living with dementia in their communities to live well, without feeling embarrassed.

We also want to note that these cards should not be used as an 'excuse' or for the public to treat people with dementia differently or ignore them. We want to use these cards as a way to be more inclusive, educate others, and for businesses to be able to offer the best service for persons living with dementia. 

What are some ways you educate the public about dementia? Share with us in the comments below. 

Are you noticing your relative with dementia no longer has the same appetite as they once did? For many persons living with dementia, they often experience a loss of appetite. 

In this post, we discuss tips and strategies for ensuring your relative with dementia receives the best care and nutrients when they experience a loss of appetite.

Are you feeling stressed as a care partner trying to manage your loved one's care alongside your family or friends? This can be a difficult situation to solve, but with organization, communication, and honesty, the process can be much smoother for everyone involved. 

1. Stay Organized

The most important aspect to consider is organizational skills. Do you have multiple care partners helping out throughout the week? Create a schedule for care partners but also for your loved one with dementia to ensure everyone stays organized and knows their expectations. It is important to keep the person receiving care at the forefront of their care so that they understand who is taking them where or who is coming to visit them. Let them make choices about their own care. 

Plan a meeting and write down your schedules to avoid misunderstandings and keep everyone on track with the care plan. This also makes it easier if someone is no longer able to help out and can reduce frustrations for everyone. Keeping a whiteboard calendar in your house can help with managing schedules.

2. Have Open Communication Often

Communication is essential to reduce stress, keep everyone informed, and reduce any conflicts that may arise. Living in the age of so much technology, use it to your advantage. Create group chats via text, Facebook, emails, etc. to stay in touch and to ensure everyone knows what is happening. This way, it reduces any time conflicts and lets everyone be a part of the conversation.

3. Be Honest

Is one member feeling much more stressed than others? Have an honest, open conversation about how you are feeling to limit negative situations. If members of the care team are stressed, the person receiving care will also feel stressed.

While this might be a difficult conversation to have, it is important to ensure that everyone, including all care partners are feeling understood and equal. Caring should be fair to everyone, and sometimes one person might feel like they are doing all the work with no space for themselves.

4. Maintain Relationships

Don't let your care plan interfere with your previous relationships. You are working as a team to support your loved one with dementia. Care with love, openness, and mutual understandings. Remember that while caring can be burdensome at times, it is also so rewarding and comes from a place of love and support.  

What are some of your strategies for caring with multiple care partners? Share with us in the comments below.

Has your loved one with dementia progressed along their journey? Are you finding they are no longer recognizing you and are you feeling forgotten? Unfortunately this experience is quite real for many persons living with dementia and their relatives and friends. But it doesn't have to be a negative experience. There are ways to support both yourself and your loved one throughout this next chapter.

A person with dementia is still themselves

Individuals living with dementia are still themselves and they are still here. It is up to us to recognize them, and not for them to always recognize us. They are still able to interact, whether verbal or non-verbal and you can still connect no matter how far along you are on the dementia journey. Reflect on all of the special moments you've had throughout your lives and continue to connect even in this chapter. 

Be there for them

Relatives might find this experience difficult to cope with and may no longer want to visit with them if their loved one no longer recognizes them. Doing this might only perpetuate the lack of recognition. However, visiting will still help them to remember you, your voice, or how your hand feels in theirs. Continue to connect and you'll be surprised when you connect over a look, a wink, or a touch of the hand. 

The power of touch

While they may no longer be able to verbally say who you are or might seem disinterested in the conversation, know that persons living with dementia are still able to connect. There are many benefits through touch, whether through a hug, touch of a hand, or pat on the back. 

It's not their fault

Avoid blaming the person with dementia with their lack of recognition. It's not their fault that they might struggle expressing your name or who you are to them. Avoid phrases such as, 'do you remember me?' Or 'what's my name?' This might only contribute to further frustrations. Instead, tell your relative with dementia who you are and greet them as you always have, while maintaining their personhood. 

Do you have any special moments with your loved one with dementia you'd like to share? Comment in the box below. 

Planning on travelling with your loved one with dementia this long weekend? Whether it's a short trip or a long trip, we are sharing some tips on how to make it the most comfortable experience for everyone. 

Practice Patience

It is important to remain patient during your trip or tensions might be high during your trip. Give yourself extra time whether you are driving or flying. Giving yourself more time to get to where you need to be will reduce stress and keep everyone in a better mood as there is not as much of a rush to get there on time. 

Stay Relaxed

If you notice that you or your loved one is becoming stressed, recognize this and practice coping methods to reduce this stress. Taking a few deep breaths or pausing for a minute or so will help to feel refreshed and a bit calmer. Perhaps listen to your favourite music for a bit and boost your mood. 

Go with the Flow

This is much easier said than done. If things aren't going quite your way, take a deep breath and let things happen how they might continue to happen. Try to maintain composure if the trip might not be going your way and keep your focus on keeping your loved one with dementia relaxed and comfortable. Becoming frustrated and short will only worsen the situation and make a person with dementia feel that much worse. Brush it off, laugh it off, and make the most out of your trip. 

Stay Organized and Be Prepared

Preparing for the trip is of utmost importance to have a trip go smoothly. Think of the unthinkable and ensure everything is organized prior to leaving. Be prepared and pack activities to do, such as a Marlena Book, music, word games, or anything that might bring your loved one comfort. Pack some snacks and drinks for the journey. Ensure to have medications, an extra change of clothes, and any other health related items easily accessible. 

Check In

Continue to check in on your loved one, are they thirsty? Hungry? In need of a restroom break? Check in and ensure their comfort. This will lead to a better trip and might help reduce any negative experiences. 

Stay Together

Ensure to stay together and do not separate too far from one another. Places that are unfamiliar to persons with dementia might cause frustration and be overwhelming. Having a familiar person alongside them for the journey will help them feel relaxed and comforted. 

Flying

If you are flying, there are some important things to remember. If walking might be challenging, arrange for a wheelchair on the flight and have an attendant assist you and your loved one on and off the plane. Keep all important documents with you and easy to access to reduce the stress of losing items. Arrange a flight that will be comfortable for a person with dementia, whether that be at a good time of day for them, no layovers, or extra leg room, there are many considerations to be made before flying to ensure comfort. Speak to a travel agent prior and disclose their dementia journey to review options that might be available to make for an even better trip. 

Have Fun and Create Memories

Whether the trip doesn't go the way you planned, the importance is the journey. Have fun spending time together and creating memories you might not have if you stayed home. Time goes by fast, so don't get caught up in the minimal things, but look at the bigger picture and enjoy the moment. Once you reach the destination, relax! You've made it! Have fun and enjoy vacation together!

Do you have any tips or tricks for travelling? Share with us in the comments below!