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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.

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!

Along the dementia journey, you might start to think about adult day programs (ADPs) for your loved one with dementia. This might be a difficult decision to make and many individuals think of ADPs in a negative light, as you might not think your loved one belongs in an ADP or might not understand why they are attending. On the blog, we discuss the pros and cons for seeking ADPs and how we can help eliminate the stigma associated with ADPs.

Not sure of what an ADP involves? 

Let's start with the positives of ADPs and how they can assist you and your loved one along the dementia journey. 

1. Do you find that your loved one with dementia is no longer participating in social activities?

Many individuals with dementia experience a loss of friends after their dementia diagnosis as people don't always know how to react to dementia and stigma still exists. This results in feelings of isolation and loneliness. Persons diagnosed with dementia should be engaging in both social and physical activities as they have many benefits for them, such as improved mood, a reduction in cognitive decline, improved communication skills, and helps persons with dementia to gain confidence and feel a sense of belonging and accomplishment. ADPs provide both social and physical activities in their programming, which is important for persons living with dementia based on the aforementioned benefits. While individuals are diagnosed with dementia, this does not mean their preferences change, they are still themselves and should still seek out opportunities to remain engaged in their communities, whether that be through an ADP or not. 

2. Are you feeling burnt out and in need of a break?

Care partners often enroll their loved one with dementia in an ADP to take some time for themselves and have a break. ADPs typically run during the day, with programming starting around 9:30 and ending around 4:30. This provides care partners with the day to relax, run errands, do house chores, visit with friends, or engage in their own recreational activities. ADPs are a great opportunity for care partners to have a respite period and can be beneficial for the relationship as the person with dementia and care partner get a break from one another.

3. Is your loved one with dementia not sleeping as well or maybe napping too much during the day?

Maybe they are missing that cognitive stimulation of being in a routine, engaging with others, and participating in recreational activities. Physical activity and socializing are cognitively stimulating activities that help to improve sleeping. Individuals who attend ADPs typically have a routine, waking up, getting ready for the program, attending the program, and coming home in the later afternoon. This helps individuals get into a routine which might also help their sleeping routine. Sleep is important, but napping too much during the day might be due to a lack of cognitively stimulating activities and boredom. While napping is beneficial, sleeping for most of the day might affect their nightly sleep schedule. Engaging in an ADP will help them maintain a routine, be cognitively stimulated during the day resulting in feelings of tiredness, and reduce the time spent napping during the day. 

4. My loved one with dementia is in the early stages of their journey and it might not be the best fit. 

ADPs are often offered for individuals along any stage of their journey. Finding the right match for you and your loved one with dementia is essential. If you're interested in enrolling your loved one, visit some ADPs in your community and see what stage individuals are at and if your loved one would feel comfortable in the space. Speaking with your local Alzheimer Society will allow you to get to know each ADP in your community and gain insight on which one might be best for you and your loved one. Speaking with friends or neighbours who are also on their dementia journey will also help you gain insight on ADPs. If your loved one knows someone who already attends an ADP, this sense of familiarity will make them feel more comfortable attending. 

5. Losing relationships and seeking a connection to the community? 

ADPs are a great place to meet community members in a similar situation as you and your loved one. ADPs are a great opportunity for your loved one with dementia to engage with others who are similar to them and connect over their diagnosis. They can gain friends and support along their dementia journey. For care partners, you can connect with one another and remain integrated in your community with others who are in a similar situation. 

6. Needing support as a care partner?

ADPs that offer support groups can help with this. Many ADPs offer separate support group sessions either during the time your loved one is at the program or after the ADP. This is a great opportunity to meet new people who are also along the dementia journey and gain support from others. It's important to talk to other people as a care partner and gain support from those around you. 

7. ADPs help to track the dementia journey

Noticing any changes in your loved one with dementia? ADPs can help to track these changes while your loved one attends the program. There are many support staff who are directly interacting with persons with dementia and can make notes of any changes they might see. If you, as a care partner, might notice some changes you can always talk to staff members at the ADP and they can direct you to more resources and next steps. 

Next, we'll take a look at some of the challenges to ADPs and why they might not be the right fit for you and your loved one with dementia. 

1. Waitlists

Many ADPs have waitlists and this might take a while for your loved one to be accepted as a participant. While this can be a drawback, it is important if you might be interested in an ADP in the future to put your names on the list. Whether or not you are ready for it when they do call, this way this gives you the opportunity to say yes or no when the time comes. 

 2. Referral

Some ADPs require a referral in order to attend. Contact your local LHIN or doctor on how to receive a referral and the process involved. 

3. Cost

Many ADPs cost money to attend. While looking, take this into consideration and determine whether or not you can afford ADPs or not. Reach out to resources in your community if seeking other alternatives.

4. Lack of Understanding from your Loved One

Your loved one with dementia might not understand why they're attending an ADP. Treat an ADP as a positive experience and inform them of why they're going to avoid frustrations and confusion. Other participants might have more advanced dementia than your loved one, and prior to enrolling your loved one with dementia, it is important to have an open and honest conversation with them and make sure they are comfortable attending a new place. Many ADPs ease you into their spaces with trial runs to ensure this is the best fit for them.

5. Location

Ensure the location of the ADP is the right fit for you and your loved one. This is something to consider if you have to be responsible for picking and dropping them off or if you would like to stay close in case anything might happen. 

We hope this discussion helps you make the right choice for you and your loved one with dementia. It is important to talk about it with your loved one, family, and friends to ensure ADPs are right for you. 

References

Persons with dementia are still humans. And we should continue to treat individuals with the same dignity, respect, and love that we always have before a dementia diagnosis. While some individuals might not be able to tell you a name, a date, or what you were wearing the day before, they will always remember the feeling of a hug, holding a hand, or a simple pat on the back. As human beings, we sense feelings of safety, comfort, and love in human touch. 

Familiarity is an important aspect for people living with dementia, and what better way to make a person feel safe than with a familiar hug from their child, grandchild, or friend? 

Studies have found the benefits of touch for persons living with dementia. This includes reducing symptoms associated with dementia, such as agitation, feelings of restlessness and vocalization. Touch also helps with feelings of anxiety and loneliness. 

It is important to note that there are a variety of ways to approach a person with dementia if you do want to share touch with them. Always ensure you approach individuals and have their consent or this may cause feelings of frustration or a loss of dignity. Simple touch can include hand massages, hand holding, a pat on the back, or a high five. It is important to maintain dignity and respect for individuals and to not touch if you sense that a person is not comfortable. 

For me, I know that my grandmother Marilyn hardly refuses a hug from me and her eyes brighten when we hold hands and sway to the beat of a song. It's these moments that I cherish as she continues on her dementia journey. Sharing a moment of touch allows us to connect in ways that words never could. 

References

Hansen, V. N., Jørgensen, T., & Ørtenblad, L. (2006). Massage and touch for dementia. Cochrane Database Systematic Reviews, 18(4). doi: 10.1002/14651858.CD004989.pub2

Woods, D. L., Craven, R. F., & Whitney, J. (2005). The effect of therapeutic touch on behavioural symptoms of persons with dementia. Alternative Therapies in Health and Medicine, 11(1), 66-74.