News — Dementia

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!

What is apathy?

Apathy is typically defined as a lack of motivation or disinterest in certain activities.¹ It can be due to a dementia diagnosis and can impact their quality of life and their care partners' quality of life. When not identified correctly, apathy can look very similar to depression or laziness. For most persons living with dementia this is not usually the case, as apathy might be mistaken for depression. 

What is the prevalence of apathy in persons with dementia?

Apathy is a very common behaviour associated with dementia. Research has found that approximately 70% of persons living with Alzheimer's disease exhibit apathetic behaviours.^2-6

What is the impact of apathy?

Apathy can affect not only persons living with dementia but their care partners as well in terms of their emotional well-being. If unrecognized, apathy can have a greater impact, as persons with dementia who are more motivated typically experience a reduction in cognitive decline. 

How can we better support persons living with dementia who experience apathetic behaviours?

It is important to know the signs of apathy before jumping to conclusions. If your loved one with dementia is less willing to participate in activities, carry out activities of daily living, or might struggle getting out of bed, they could be showcasing apathetic behaviours. 

As a way to address this, there are limited pharmacological interventions, but more non-pharmacological interventions that are better suited to supporting people with dementia to live well. For example, therapeutic recreational activities can help to improve their quality of life and boost their mood. Activities that include stimulation and creativity have been found to have a positive impact. Other activities include cooking, Montessori methods, music, exercise, and pet companionship.¹ 

We are hopeful at Marlena Books that reading would also help to improve quality of life and reduce apathetic behaviours as it is a cognitively stimulating activity, however, we can not make any conclusions given the scant research on reading and dementia. 

So what does this all mean?

Based on all of this information, now what can you do to best support yourself, as a care partner, and also your loved one with dementia? Our advice is to continue to keep your loved one with dementia engaged in activities, socializing with others, and maintain their sense of community. This will help to boost their mood and also offer them with a sense of purpose. For yourself, recognize the signs of apathy and gain support from others. Whether that be enrolling your relative with dementia in an adult day program or seek a respite program, take time for yourself to regroup and come back with a positive attitude. While some days you might need a rest, it is important to continue keeping both yourself and your loved one engaged in recreation and social opportunities, as it has numerous benefits. 

References

1. Brodaty, H. & Burns, K. (2012). Nonpharmacological management of apathy in dementia: A systematic review. The American Journal of Geriatric Psychiatry, 20(7), 549-564. doi: 10.1097/JGP.0b013e31822be242

2. Robert, P. H., Darcourt, G., Koulibaly, M. P., Claret, S., Benoit, M., Garcia, R., Dechaux, O., & Darcourt, J. (2006). Lack of initiative and interest in Alzheimer's disease: A single photon emission computed tomography study. European Journal of Neurology, 13(7), 729-735. doi: 10.1111/j.1468-1331.2006.01088.x

3. Marin, R. S., Firinciogullari, S., & Biedrzycki, R. C. (1994). Group differences in the relationship between apathy and depression. The Journal of Nervous and Mental Disease, 182(4), 235-239. doi: 10.1097/00005053-199404000-00008

4. Benoit, M., Dygai, I., Migneco, O., Robert, P. H., Bertogliati, C., Darcourt, J., Benoliel, J., Aubin-Brunet, V., & Pringuey, D. (1999). Behavioural and psychological symptoms in Alzheimer's disease. Relation between apathy and regional cerebral perfusion. Dementia and Geriatric Cognitive Disorders, 10(5), 511-517. doi: 10.1159/000017198

5. Hart, D. J., Craig, D., Compton, S. A., Critchlow, S., Kerrigan, B.M., McIIroy, S. P., & Passmore, A. P. (2003). A retrospective study of the behavioural and psychological symptoms of mid and late phase Alzheimer's disease. International Journal of Geriatric Psychiatry, 18(11), 1037-1042. doi: 10.1002/gps.1013

6. Starkstein, S. E. Jorge, R., & Mizrahi, R. (2006). The prevalence, clinical correlates, and treatment of apathy in Alzheimer's disease. European Journal of Psychiatry, 20(2), 96-106. 

Being a care partner for your loved one with dementia can be stressful at times and can sometimes change the relationship you had prior to diagnosis. Today is International Self Care day, and we are sharing ways to take care of yourself as a care partner. 

1. Recognize care partner burnout

Feeling burnt out? If you're feeling tired, stressed, and drained, recognize these signs and take action. Just because you're a care partner does not mean you can not prioritize your own health. Recognize how you feel before it takes a greater toll on yourself. Make a plan on how you can move forward and incorporate self-care practices into your routine to take care of yourself. 

2. Seek support

Being a care partner does not mean you have to be alone on this journey. Seek out support from family members, friends, support groups, professionals, or online forums. Talking about your feelings can help reduce feelings of burden and stress and you can find more resources to better support you and your loved one on the dementia journey. 

3. Take a break

As previously mentioned on our blog, adult day programs are a great way for care partners to take a break while their loved one is engaging in social activities. You can also seek out respite programs in your community and enroll your loved one in a respite stay if you are looking for a longer break. Have an open conversation with your loved one with dementia and make this a positive experience for them. They will understand and might also enjoy a break to feel refreshed and well rested. 

4. Spend time doing your favourite activity

Have you been putting off a favourite hobby or social activity? Take time and spend time doing what you love! This will help boost your spirit and relieve your stresses. 

5. Spend time engaging in an activity together

Take time to breakaway from the care partner relationship, and engage in a fun activity with your loved one with dementia! It does not have to be big, but something you both loved doing. Doing so will bring you closer and enjoying time together will put both of you in a better mood. Laughter is the best medicine. 

6. Incorporate self-caring practices into your daily routine

Life gets busy, especially as a care partner, taking at least 10 minutes a day to an activity geared towards self-care can boost your mood each day. Make this part of your daily routine and this will help to lessen those feelings of care partner burnout. Some activities you can easily incorporate are: writing down three things a day that you're grateful for, meditation, engaging in a hobby, yoga or exercise. Remind yourself daily that you are doing your best and are helping your loved one along their dementia journey.

How do you practice self-care? Share with us in the comments below!

Receiving a dementia diagnosis can be quite isolating. Stigma still exists in communities and many individuals lose their friends as a result of this. This not only affects persons living with dementia but also their care partners and relatives. It is important to recognize the need for maintaining connections to your community to face dementia head on and continue living a good life. 

Dementia is not a barrier, we should open others' minds to realize that dementia presents itself differently in everybody and maintaining social connections and involvement in communities can assist with the progression and help reduce cognitive decline. 

Individuals who are diagnosed with dementia might receive strange behaviours from others and might want to retract from their community and no longer participate in hobbies they have always participated in. If you recognize this, look for opportunities in your community, whether it be an exercise group, support group, book club, or social opportunity. Joining a group will help to offer that sense of belonging and gain new friends you might have never met before. 

For care partners, this time can also be isolating. You might lose friends as they do not know how to interact with your relative or are not educated on what dementia really is. A safe place to connect with others is through support groups, whether online or in person. These can be a great place to share, gain support, and talk to others who are experiencing a similar situation. Social groups are also a great space, joining a crafting group, social group, or exercise group is a great opportunity to be social while enjoying something with others who have similar interests. Everyone is going through something, so sharing your story can really help to get support. If you don't have time to attend a support group, contacting your local Alzheimer Society is a great opportunity to gain access to more resources and find support that you can easily integrate into your busy schedule. 

While dementia might feel isolating, care partners and persons living with dementia express that it also provides an opportunity for them to meet new people, become more educated on the disease and educate others, and become even more involved with their communities than they were before. 

What do you do in your community to stay involved? Share with us in the comments below! 

Most individuals who receive a dementia diagnosis also experience the loss of their driver's licence. For some, this can be embarrassing, undignifying, and impacts their sense of choice and determination. However, this precaution of taking away a licence is essential to maintain not only an individual's safety but also the safety of other drivers on the road. It's also important to remember that it's not their fault. 

This is often a difficult conversation to have, many individuals voicing how they think it's unfair that the doctor took away their licence and not completely understanding why. So, how can we make it better?

It's important to be upfront, honest, and clear about the loss of a driver's licence and why it happened. Don't make them feel upset, embarrassed, or like it is their fault. Empathize with them and let them know that driving does not mean they no longer have choices. 

Moving forward, if you do own a car, practice tucking the keys out of sight. Keeping them tucked away will reduce that constant reminder that they can no longer drive and hopefully reduce the chances that they will pick up the keys and start driving when they are not supposed to. Provide a task for individuals to do before getting in the car to offset those feelings. Make them responsible for grabbing a bag, drinks, or any other items you might bring with you in the car. This provides individuals with a sense of purpose and might lessen those negative feelings. 

Some helpful sayings to help reduce these negative feelings include: 

• The doctor thought it was best for everyone. 
• It's not your fault. 
• We just want to keep you safe.
• Remind them of their memory loss and be upfront about their diagnosis and comfort them. 
• Offer to drive instead. 
• Engage in alternatives to driving, such as walking or biking. 

 These conversations are never easy, but with your support, individuals with dementia can live dignifying, meaningful lives regardless of a driver's licence.