Today, September 21 is World Alzheimer's Day. You might have seen the hashtag floating around social media, or have come across posts highlighting the day. But what exactly does World Alzheimer's Day mean? To me, World Alzheimer's Day means 

You are not alone 

When my Nanny (what I call my grandmother) was diagnosed with dementia it felt like no one understood. I watched Nanny begin to change, and my confidant slowly became a dependant. I felt alone.

I watched as my Grandfather adapted to the new challenges his wife was facing. Some practical, some emotional, their entire relationship evolved as he became her care partner. My stoic grandfather reflected on who his wife used to be. He felt alone. 

My Father joined his siblings in assisting with care, organizing legal and financial matters, all while balancing their own lives, careers and families. As their stress levels rose I witnessed how many of their friends just did not understand the extra responsibilities that were thrust upon them. They felt unheard in the system. They felt alone. 

And my sweet Nanny, the protagonist in this story, well I wish more than anything I could know how she felt. The hardest part is not knowing what she feels if she's happy, if she's confused. This is the part that haunts me. It's only an assumption, but she must have felt alone. 

As the years passed we became connected with more families who were facing similar challenges. My Nanny's sisters were diagnosed. We were put in touch with our local Alzheimer's Society. My Grandfather attended a men's breakfast for husbands of individuals diagnosed with dementia. Some of my friend's grandparents were diagnosed. Things started to change as we heard more stories of those who were on the same journey as my family. It started to feel a little less lonely. 

My Nanny transitioned to long-term care a few years back. We were suddenly exposed to many others living with Alzheimer's and dementia. Although the challenges were still there, some more prevalent than ever before, we were surrounded by families who were just like us. Nurses, recreation staff, and personal support workers who were just like us. We were definitely not alone. 

I am fortunate in my daily work to hear the stories of families like mine. Families who are facing a dementia diagnosis and are looking for tools to improve quality of life, to connect, and to keep relationships strong. I get to hear stories of individuals who are living well with dementia, families and friends who are changing the system, and groups that are fiercely advocating for those living with dementia. This doesn't mean that the hard days don't exist. When I come across an old note or see my friends with their grandmothers, I can't help what wonder what our life would be like if she wasn't living with dementia. 

So, today on World Alzheimer's Day we honour those living with dementia. We celebrate families, care partners, staff and community and government advocates. I urge you to connect with families, support organizations or online groups if you or someone in your life lives with dementia. And I hope this is a reminder that you are never alone.

On Thursday, September 6th we had the privilege of spending National Read a Book day with the staff and residents at St. Luke's Place in Cambridge, ON. 

 Our day started with a small presentation and intimate book reading to a group of residents and apartment residents in the auditorium. Our very own Karla Kale, who has authored three Marlena Books was present to read The Railroad and The Heart Garden. The residents were engaged, and had plenty of questions for us after! It was fun to hear their feedback and engage with them as they listened to the story. After the reading, we were able to sample the books and had a great time watching individuals read on their own. 

St. Luke's Place residents enthusiathically listening to Karla Kale read The Railroad

"I like the way it feels in my hands!"

 After our first session we headed over to the special care unit to read to a  smaller group of residents. Karla was able to stay and read two stories to this group, who were attentive and captivated by the stories. We were thrilled to hear staff remark, "This is the quietest I've heard this group", and "she rarely smiles". It is always exciting to see the power reading can have firsthand, and we were moved by how alert the second group was. Thank you for letting us share our books with you! 

Karla Kale reads the Heart Garden to the special care unit. 

Our final session was back in the auditorium and opened up to the community and stakeholders. We were able to share the Marlena Books story and hold a Q & A before a lively reception with refreshments generously provided by St. Luke's Place. 

Marlena Books' researcher Karen Thompson shares how to get involved with Marlena Books.

Residents show off their book!

Thank you for such a wonderful day, St. Luke's Place! We can't wait to celebrate National Read a Book Day with you next year! 

When my Nanny (what I call my grandmother) was in her mid-sixties she spoke eagerly about travelling during her retirement. I always envisioned her and her friends travelling around the world visiting new places, bringing her grandchildren little souvenirs and sharing stories of her adventures. 

When she was diagnosed with dementia shortly after, her plans changed. She did some travelling with her husband but never got to accomplish all the travels she dreamed of. 

Fast forward a few years, a university degree and a startup that focuses on improving quality of life for individuals living with dementia. I now have the privilege of travelling to share the story of Marlena Books at conferences and events. Every time I travel I feel a pang of guilt for being able to see the world, something my Nanny was not given the privilege of completing. 

When I return home I share my stories, of seeing new places and meeting people who are also living with Alzheimer's and dementia. I talk about sightseeing and hope for the future of dementia care while she does her best at listening. And each time, I bring her a little souvenir. Her room in her long-term care home is slowly being filled with postcards of places travelled. It's nothing much, but gives us a way to connect, and brightens her room. 

The postcards have become our tradition. New Orleans, South Korea, New York and Chicago grace her wall. Although she can no longer travel, I plan to see the world for the both of us. I can't wait to see which city or country makes it up there next. 

Do you have a special tradition you've created for your loved one living with dementia? Share with us below for a chance to be featured on the blog! 

Interested in keeping your brain strong and healthy? Try these creative ways to give your brain a daily workout! 

Crosswords: Crosswords are great for testing our recall, problem-solving, and reasoning skills. Try mixing up the topic or creator to give your brain a new challenge, and choose what's right for you. Crosswords come in many skill-levels, so start at a moderate difficulty and either try to maintain or improve this level. 

Learning new skills: Learning new skills is one of the ways our brain forms new neural connections! Continuing to engage in new or unfamiliar skills will build and maintain these neural connections, keeping your brain healthy. This can help with maintaining long-term memory and improves attention span while reducing stress. Any skill works, so pick up that instrument you've always wanted to try, learn a new language, test out your photography skills, or pick up a new craft. 

Puzzles: Did you know puzzles are good for activating both sides of your brain? Using left-brain logic and right-brain creativity, puzzles keep us alert and expands our creativity. Puzzles can be a great way to increase concentration and visualisation, and studies have shown frequent puzzle activity can improve short-term memory. The best thing about puzzles? They come in practically every theme and can be made for any skill level or attention span. 

 Reading: We might be a bit biased, but we believe reading can give your brain a great workout. Reading can improve mood, behaviour, and memory, and also contributes to higher self-esteem and self-confidence. All it takes is 30 minutes of reading a day, either independently or with a partner! If you're interested in Marlena Books check us out here. 

Socialize: Socialization is actually a great way to engage your brain! Due to the unpredictability of conversation, your brain is very engaged when listening and deciding on how to respond. Call a friend or meet in person for a short, engaging conversation while simultaneously providing cognitive stimulation. 

Exercise: While there is no specific machine at the gym that can strengthen your brain, exercise is a great activity that contributes to all around physical and brain health. Exercise can help regulate hormones and blood oxygen levels, and helps with overall cardiac health, all of which are great for your brain! Engaging in walking, cycling, swimming or light aerobics are all great ways to stay fit, workout your brain, and have fun!

Gardening: Gardening is one of the only activities that is good for both your brain and your yard! Gardening is scientifically proven to improve self-esteem, ease depression and reduce negative behaviours. Gardening also gets you active and burns calories and exposes you to Vitamin D- the vitamin that assists in calcium absorption, and prevents osteoporosis in older adults. All it takes is 10-15 minutes outside to get your daily Vitamin D needs, so get outside and work your garden and your brain! 

 Apps: There are a number of popular apps that can provide cognitive stimulation and help you stay engaged. Some apps that challenge working memory and mental agility can help keep neural connections in your brain strong. Apps like Luminosity and Dakim are great choices and can be found in the App or Google Play store. 

Let us know what your favourite way to keep your brain active is below! 

Resources:

https://www.memoryjoggingpuzzles.com/why-jigsaw-puzzles-good-for-the-brain/

https://www.independent.co.uk/life-style/health-and-families/health-news/gardening-can-help-improve-self-esteem-calm-anger-and-ease-depression-new-study-finds-a6714401.html

 https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/ 

When you hear that someone you're about to meet lives with dementia what's the first thing that comes to mind? Have you ever avoided social situations or distanced yourself from someone living with dementia because you just aren't sure how to connect with them anymore? Are you living with dementia and are frustrated by labelling from people who don't understand? If you answered yes to any of the above, this post is for you! Today we debunk common dementia misconceptions. 

They are a completely different person

When someone is diagnosed with dementia a common misconception is that their entire life changes. But that is not true! Although individuals living with dementia are experiencing a variety of changes, who they are at the core does not change.  Individuals with dementia will maintain the same interests, and may even reconnect with old pastimes. Marilyn always had a dog, and still enjoys petting her granddogs! 

They won't remember my visit so why even go 

I have heard this sentiment from family and friends who are struggling to adapt to the changes that come with a loved-one entering long-term care or dealing with memory issues at home. Although an individual with dementia might not remember the specifics of a visit, the time spent with them is important. Socialization contributes to the overall well-being of individuals living with dementia, so continue making those visits! All it takes is one laugh or smile to make it all worthwhile. If you are struggling with what to do during a visit try reading one of our books together, we guarantee it will be a good read!  

All individuals with dementia live in long-term care 

A common stereotype associated with dementia is that all individuals live in long-term care or assisted living. Even though many individuals will need to transition to assisted living during their dementia journey, most individuals continue to live at home for as long as they feel comfortable. 80% of individuals living with dementia still reside in their community. Communities are working to become more dementia-friendly by reducing common barriers like transportation and lack of education.

You can tell from looking at someone whether or not they have dementia 

 Individuals living with dementia look a lot like you and I. You cannot tell if someone has dementia just by looking at them, that's why it's important to become educated on how someone with dementia may present themselves so you can understand challenges, and support in appropriate ways. Some communities have created programs like the blue umbrella pin where individuals with dementia wear a blue dementia pin to identify themselves as living with dementia so they can receive support if needed. 

No one understands what I'm going through 

At times care partners or persons with dementia may feel like they are going through this journey alone. Dementia can be challenging and brings up unique scenarios many families are navigating for the first time. Do not let yourself be isolated! Get connected with your local Alzheimer's society or community group to join one of the many support or awareness groups available and connect with people who are on similar journeys.   

Individuals living with dementia are "sad and confused"

Unfortunately, persons living with dementia are often portrayed in the media as being sad, isolated, and confused. It is true that individuals with dementia face a variety of new challenges, however, it is a misconception that everyone living with dementia faces memory challenges or is unhappy. There are many forms of dementia, and symptoms are not limited to memory loss. Behavioural changes and social anxiety are just some of the other symptoms an individual with dementia may live with. Despite these challenges individuals with dementia can live happy, fulfilling lives. Many individuals volunteer, are part of social groups and are activists for dementia awareness, all of which bring happiness and purpose.  

They will be completely dependent 

 A dementia diagnosis does not mean someone is automatically completely dependent on those around them. Many people living with dementia are able to maintain their ability to do familiar tasks such as self-care, cleaning and cooking. When there are changes in ability try modifying instead of stopping activities. Maybe the person with dementia in your life can no longer cook a full meal, but can they set the table? Could they stir ingredients or wash dishes? Supporting individuals with dementia in household contributions can help them feel purposeful, and make tasks easier and more enjoyable for everyone. 

"Our relationship is over" 

Individuals living with dementia have the capacity to engage in meaningful relationships. Communication is key when maintaining relationships so both individuals feel loved and supported. These relationships are rarely one-sided, as persons living with dementia have lots to contribute and share. Again, modification is important to ensure no one feels excluded. Every relationship grows and changes, with or without dementia challenges. Do what feels right for you, and enjoy the little moments! 

What's a common misconception about dementia you've had or experienced? Leave us a comment below! 

          Whilst individuals with dementia remain one of the most stigmatized groups within community programming, individuals with dementia want to remain integrated in their community and given opportunities to partake in meaningful leisure with others. Socializing with other individuals has been shown to improve one’s overall health and helps to reduce stress. It is important to maintain your relationship with your loved one with dementia and to partake in activities that they’ve always loved, regardless of a dementia diagnosis.

Here are some modifications you can adopt when partaking in activities with your loved one with dementia:

Extra time and patience

Persons with dementia might need some additional time to carry out a particular activity. Be patient and give them extra time or support when engaging in leisure activities. They want to enjoy the same activities but may need additional time thinking about how they want to engage in the activity.

Stay optimistic

Approach activities with a ‘glass half full’ mindset. Focus on the positive experiences that occur within the activities and this will allow everyone to enjoy the activity! Embrace the positive outcomes that come along with leisure and make the most of your time spent together.

Take one step at a time

Avoid overwhelming individuals with dementia, but rather provide information one step at a time throughout the activity. If you’re engaging in a physical activity, like lawn bowling, provide instructions throughout the activity rather than all at once. This can overwhelm anyone, so it is beneficial to explain instructions in a clear way.

Find a place with limited distractions

Distractions can take away from the activity at hand – which might frustrate individuals or create a negative experience. Finding a place with limited distractions helps individuals with dementia to focus on the activity at hand and fully engage.

Be present

Individuals might get off task, so providing gentle reminders of the activity might help them to engage for a longer amount of time, creating a positive experience for everyone. For example, if you’re baking together, reminding them of the current steps that need to happen before introducing a new step allows individuals to engage in the activity and be present in that moment.

Actively listen

Ensure you are actively listening to concerns and questions from your loved ones and not ignoring them, as this makes individuals upset and feel a loss of dignity. Listening to individuals’ needs or opinions throughout activities can benefit both you and them and sets everyone up for success.

Be flexible

Life is never perfect – so activities shouldn’t be either! Take a moment to recognize that everyone does things a bit differently, and that’s okay! Be flexible with activities and make modifications when needed. As long as everyone is having fun, that should be your main concern.  

Put safety first

Modifications can be made to any leisure activity! If individuals face challenges with certain activities that are detrimental to maintaining their safety, make changes! Safety is a key concern and should be considered throughout any leisure activity.

Providing opportunities for decision-making

Individuals with dementia enjoy making decisions in regard to their leisure activities. Encourage them to choose an activity that they want to partake in, not one that might be of most convenience. This allows individuals the opportunity to make their own decisions and be in control of their leisure. Simply letting them choose which book they'd like to read is a great start!

Find a time that works best for individuals with dementia

Select a time that is most beneficial for individuals with dementia to engage in leisure activities. This sets everyone up for the most engaging and energetic leisure experience! If individuals are not feeling up to the activity, don’t force them to do something they don’t want to do.  

Having fun

At the end of the day, leisure is about having fun and staying connected to one another! Enjoy the company of one another – laughter is the best medicine!

Do you make any modifications to your leisure activities? Tell us in the comments below!

Joining us as a guest author on the blog today is MA candidate Allie Serota. You can follow along with Allie's research on her twitter.  

People love their pets – so much so, that many consider their animals to be friends or family members, often enjoying a special place in the household. In fact, the reason most people choose to have an animal is for the companionship they provide.[1]Dogs are particularly accepting and compassionate friends, and many possess the ability to pick up on our emotions without us having to say anything at all. This affection and company can be a very important source of social support, love, and friendship. Indeed, for persons living with dementia, an animal may become one of the most important relationships in their life.[2]

Due to the unfortunate stigma associated with dementia, some people report that they are treated differently by friends and family members after sharing their diagnosis. More drastically, some people acknowledge feeling abandoned by friends and family altogether. [3]While stigma may negatively impact human social relationships, other relationships may become more important, such as those with animal companions.[2]The love expressed by companion animals makes people feel safe and accepted. Animals make ideal companions, as they generally enjoy our company, listen intently, and do not pass judgments. [4]

Some persons living with dementia displayed increased affection and emotional closeness with their companion animals and developed these closer relationships after the onset of dementia.[2] Animals promote calmness, and persons with dementia were found to be more relaxed when a companion animal lived in their home.[2] Animals also provide a source of connection and focus attention; interacting with animals does not rely on language, a skill often impacted by dementia. People with dementia may enjoy spending time simply holding or petting their animals, being in each other’s company. It has been noted that some spouses adopt animals specifically for their partners with dementia, with the intent of providing comfort and support.[2]While adopting a dog or cat is obviously not feasible or practical for all families, research does support benefits to both persons living with dementia and their care partners.[2]

Beyond companionship, caring for an animal enables individuals to continue to be purposeful and relevant. We must get up in the morning to walk the dog and feed the cat; making us accountable to something beyond ourselves and contributing to the care of another. Persons with dementia can and do contribute meaningfully to a number of relationships, and importantly give love. Highlighting the significance of relationships with animals is important because it can challenge perceptions of persons with dementia merely as recipients of care.

Dr. Bill Thomas of the Eden Alternative states: “The real value of the human-animal bond comes from an enduring, caring relationship with a pet.” [5]It is the development and maintenance of caring relationships that makes them so meaningful and important. Now, this is not to suggest that everyone benefits from animal companionship, especially if someone has never enjoyed the company of dogs or cats earlier in life. But rather, that relationships with our furry friends can be especially significant friendships, particularly among persons living with dementia.

If you or your loved one has a story to share of your animals, please comment below – we would love to hear about it!

[1]Robinson, I. (1995). The Waltham Book of Human-Animal Interaction: Benefits and Responsibilities of Pet Ownership. Robinson, I. (Ed). Oxford, U.K.: Pergamon.

[2]Connell, C. M., Janevic, M.R., Solway, E., & McLaughlin, S.J. (2007). Are pets a source of support or added burden for married couples facing dementia? Journal of Applied Gerontology, 26(5):472-485.

[3]Sterin, G.J. (2002). Essay on a word: A lived experience of Alzheimer’s disease. Dementia, 1, 7-10.

[4]Anderson, P. E. (2008). The Powerful Bond between People and Pets: Our Boundless Connections to Companion Animals. Westport, CT: Praeger Publishers.

[5]Thomas, W.H. (1996). Life worth living: How someone you love can still enjoy life in a nursing home: The Eden Alternative in Action. Acton, MA: VanderWyk & Burnham.

A common issue that arises for families caring for a loved one living with dementia is that they struggle to give them independence and a feeling of accomplishment. This can be a hard task to accomplish because family members who have dementia need assistance from time to time. At different stages of dementia, the care recipient will have different things that they will require assistance with. The key to ensuring that your loved one can feel accomplished and independent while having dementia is to find a balance between assisting and giving the family member space. The following advice will be primarily for those with early-stage dementia.

Just Ask

            Sometimes, the best way to understand what your family member needs help with is to just ask them. Those living with dementia are aware of the challenges they face. Just ask them about what things frustrate them and how you can help. Moreover, this gives them a say in their care and a feeling of control over their lives.

Check for Safety

            There will be instances when talking with your loved one may not result in them asking for any assistance. According to the Alzheimer Association, another way to find out what your family member needs help with is to consider if there is a safety risk if they try to do something alone. If there isn’t a danger for your loved one, be supportive, and only monitor their activities as much as necessary. However, if the situation can be potentially dangerous, talk it through with your family member. Help them come to the conclusion that asking for assistance with something isn’t bad. Hear what they have to say and don’t assume you know everything.

Don’t Shadow them too much

            There’s no doubt that your loved one will need help. At gatherings, they may get lost in the crowd. However, the important thing is to not be overbearing. Provide a watchful eye, but respect their boundaries. This will go a long way to ensuring your loved one feels in control.

Look for Meaningful Activities to do

            Participating in activities has a wide range of benefits for your loved one, from making life more fun to reducing wandering and agitation. Some activities to consider include gardening, listening to music, going for walks, and making dinner together. Doing these activities is another way for your family member to feel accomplished because they aren’t being limited by their dementia. They’re still capable of doing things, and that’s important.

Stay Positive

            As mentioned by the Alzheimer Association, when your loved one is doing something, assume that they can do the task. If you notice that they become frustrated, then try to identify why they’re frustrated before intervening. Additionally, it is important for you to be patient and supportive. The last thing you want to do is to make them feel as if they are a burden to you.

            One of the trials of dementia for a lot people is coming to terms with what they’re beginning to be unable to do. You want to have open communication with your family member to give them a say in their care. By balancing independence and interdependence, you create the opportunity for them to receive the care they need, while also having time to accomplish things. Through this ongoing communication, you can give your loved one the feeling of challenging their circumstances.

References:

https://www.alz.org/care/alzheimers-early-mild-stage-caregiving.asp

An important aspect of ensuring that individuals living with dementia have a high quality of life is making sure that they are able to take care of themselves, at least to a reasonable extent. People with dementia who are able to complete daily tasks and meaningful activities on their own will maintain a sense of independence and fulfilment, especially if they continue to incorporate the things that are important to them and the things they love doing into their daily lives as much as possible.

Here are some self-care tips for people living with dementia:

Maintain a healthy lifestyle.

It’s important for those with dementia to eat a healthy, balanced diet and exercise consistently, as well as maintain a good sleeping pattern. It’s a good idea for them to talk to their doctor about what types of activities would be appropriate for them to do in order to stay active.

Do one thing at a time.

Those with dementia should focus on completing one simple element of a task at a time, as it’s less confusing and easier to do. It’s even better if they write out step-by-step instructions for themselves. For example, a written reminder saying “do the laundry” is much less effective than “1. Put dirty clothes into the washing machine. 2. Get laundry detergent from cupboard…”.

Avoid large crowds.

Larger crowds can become too confusing and overwhelming for those with dementia. More moderate environments are easier for those with dementia to enjoy.

Don’t avoid spending time with family and friends.

Spending time with family and friends is very important, and can bring a great sense of belonging and fulfilment for those with dementia. It’s important that people with dementia try not to shy away from participating in certain activities and that they do their best to take the opportunity to spend quality time with those they love.

Avoid dwelling on things that can’t be recalled from memory.

Sometimes people with dementia will find that they cannot recall something they know they should know. It’s important for them to recognize that this is okay and that dwelling on the matter may only frustrate them.

 Ask for help when it’s needed.

Everyone needs help sometimes – this is completely normal and not something to be ashamed of!

Do you have any more relevant tips? Tell us in the comments below!