A good way to help ensure that your loved one is cared for and everything is arranged is to plan a schedule of your holidays. Make notes on a calendar of the places you need to be, things you need to bring, and how you're going to get there. Plan out activities for your loved one to bring along with them in the case that they might want some down time. Take an hour or two and map out your holidays and create to-do lists so that you can stay on track and not feel overwhelmed last minute.
Another aspect that will make your holidays smooth is to distribute tasks to others. Think of stepping on ice, when you're putting pressure on only one point, the ice is much more likely to crack as opposed to when you distribute the weight evenly. Share some of your tasks with friends and family and don't be afraid to say yes and ask for help! The holidays can be stressful enough already, but as a care partner it is important that you ask for help. The holiday season encourages individuals to give, so do not be afraid to receive!
Take time for yourself. I know that sounds selfish, but as a care partner, it's okay to spend some quality time on you. Ask a friend or family to swing by for a visit and take some much deserve you time. Read a book, go on a walk, take an extra long bath, grab a coffee, do whatever you want to do for that time and come back feeling refreshed and relaxed. The care you offer to someone else is only as good as the care you give to yourself.
At the end of the day, do not beat yourself up if everything did not go as planned. Be flexible, take a deep breath, laugh and enjoy time with friends and family. Keep in mind that you are doing your best and if you and your loved one are having a good time, then that is all that matters! And if they might be frustrated, overwhelmed, or not as cheerful at times, try to encourage them to laugh it off with you! Tell stories that will make them laugh, play a game, or do something that you know will boost their spirits.
What do you do as a care partner over the holiday season? Share with us in the comments below!
]]>Dementia-friendly means to respect, support, and understand persons living with dementia and be inclusive to individuals. Being dementia-friendly means that you are not only supporting persons with dementia but supporting all persons. As a way to be dementia-friendly this holiday season, it's important that you understand dementia and the ways in which individuals might need extra assistance or redirection. It's essential not to argue with a person with dementia even if they might not be entirely correct. Instead, agree with individuals and support them in the present moment. Create an atmosphere that is welcoming, not too overwhelming, and make a quiet, safe area for a loved one with dementia to go to if they do begin feeling overwhelmed or frustrated. This provides them with the opportunity to take a break and relax, allowing them to have a more enjoyable time.
For example, if your family opens gifts on Christmas day and typically go around a circle subsequently and your loved one is no longer opening gifts in the same order, do not argue or disagree with them and let them continue opening their presents the way they want to. Be flexible and open to adaptations.
It's essential that you understand your loved one with dementia and create an environment that empowers them to continue engaging with others and makes them feel comfortable. Loud music, a lot of conversations, and full spaces can make persons with dementia feel overwhelmed. Ensure there are no obstacles in the path of travel that could lead to any accidents. Be aware of these sensory aspects in the environment and make your loved one feel comfortable. If they seem overwhelmed, ask them what you can do to make their experience better. Perhaps reading a favourite story, listening to calming Christmas music, or sipping their favourite drink might help them relax.
What are some of their favourite traditions or things to do over the holiday season? Provide them with the opportunity to make choices about what they want to do and offer options for them. This allows persons with dementia to feel dignified when provided with choices. Keep in mind that everyone experiences dementia differently, so knowing each person's preferences is an important aspect to providing the best care.
If your loved one is in long-term care this holiday season, pay them a nice visit! Bring along any of their favourite holiday things and create an environment filled with Christmas cheer and the special time of year. The holiday season can often be a time where persons living with dementia can feel isolated or lonely, but by stopping in and visiting them, this can have such a positive impact. At the end of the day everyone, no matter a dementia diagnosis or not, should enjoy the holiday season alongside their friends and family.
How do you make your home or space dementia-friendly over the holiday season? Share with us in the comments below!
]]>Let's consider that you and your loved one typically decorate the tree together. You spend time choosing your ornaments and placing them on the tree while listening to holiday music. What if your loved one is no longer able to pick out the ornaments and safely hang them on the tree? What if the music becomes too overwhelming for them? It's important to recognize some signs that your loved one is overwhelmed or frustrated and assist only when necessary and in an encouraging way. Always ask individuals how they are feeling and then suggest other options. Perhaps turn down the music, give them a different task than hanging ornaments like sorting decorations or looking through old holiday photos, and still engage together. Find things that will still be dignifying for your loved one but that also brings them feelings of accomplishment and reminds that things aren't too different.
Make note of the best times of day for your loved one with dementia. Typically, persons living with dementia tend to "sundown" during the evening (around 4:00-6:00p.m.). Be aware of this potential challenging time and schedule plans around those times. If it is unavoidable, find activities that are relaxing for your loved one in a quiet, comfortable area. Independent activities are a great way for individuals with dementia to engage at their own pace. Provide them with activities in an encouraging way and if they'd rather do something else, let them! Another helpful strategy is to offer them a light snack to tide them over if you're waiting for a big family dinner.
The holiday season can be hectic, for everyone! For persons with dementia, this can only feel more exhausting. Encourage your loved one to get some extra rest over the holidays. This will help keep everyone happy, healthy, and well rested! As a care partner, it's important to get your rest too!
Not everyone knows the ins and outs of dementia, and that's okay! Open communication with friends and family can help let everyone know how to handle certain situations and make the holidays the most enjoyable! Inform family and friends of the best time to visit, things that might upset your loved one, or activities that they love engaging in! Let your family and friends know that dementia isn't scary and persons living with dementia can still engage and participate in meaningful conversations. Always include individuals with dementia in your conversations and do not dismiss them. Let your loved one know that they are still loved, especially over the holidays, and treat them no differently because of a dementia diagnosis!
Perhaps your loved one with dementia can no longer participate in past traditions. That's okay, you can always start new ones! Find activities that they most enjoy and start making traditions that they can do. Providing individuals with activities that they can do are much more important than drawing on their inabilities. Be supportive, encouraging, and patient. Remember the reason for the season and that the holidays are a time to connect and relax.
What are some of your favourite traditions? Share with us in the comments below!
]]>Today we feature the New Brunswick Public Library Service! They share the dementia-friendly initiatives they incorporate in their libraries and the importance of being dementia-friendly.
The New Brunswick Public Library Service (NBPLS) is made up of 64 public libraries and a Library Services by Mail unit that serve the entire population of New Brunswick. We have nearly 255,000 members (library card holders).
Our libraries offer a variety of programs that reach all audiences, from babies to seniors. We have programs for newcomers, for Indigenous people, for those who identify as LGBTQ2+, and everyone in between. Activities can be conducted in English, French, or both languages. Common programs include book clubs, author readings, workshops on various subjects and entertainment events such as concerts, movie screenings and game nights. Our flagship program is our Summer Reading Club (SRC) for children. The theme for SRC 2020 is “Health & Wellness”.
We have over 200 documents in our collection on dementia-related subjects. These documents are in English and French and are intended for juvenile, young adult and adult audiences. Some of the books we offer include stories without words (mostly picture books) aimed at adults living with dementia, but we also have resources for their family members and friends on topics such as caregiving, medical treatment and memoirs of people living with memory disorders. Our growing collection is available in numerous formats (books, eBooks, CDs, DVDs, Blu-rays, etc.).
We also provide access (through the Mental Health section of our online catalogue) to a resource from McMaster University called iGeriCare. This online tool provides simple lessons and helpful resources that allow individuals to learn about different aspects of dementia at their own pace.
Libraries around the province also offer dementia-related programs. One example is the Memory Café, which is offered in partnership with the Alzheimer Society of New Brunswick. It provides support to people affected by dementia of all ages, and along all stages of the dementia journey. The program provides an opportunity for socialization as well as education. Another example is Jog your Mind / Musclez vos méninges. Participants in this program take part in a variety of activities over the course of several weeks that are designed to increase mental acuity. They come away with tips and tricks to improve their memory and keep their mind sharp. Programs vary from library to library, so contact your local public library to learn more about the activities and events that are planned in your community.
Books on dementia-related topics are interspersed throughout the collection, based on their subject and their audience. The books published by Marlena Books are housed in the adult fiction section. If you are unsure of where to find a particular book, please ask one of our staff members. They will be happy to help you!
New Brunswick’s population is aging and memory disorders are becoming more prevalent, but some people affected by dementia still have difficulty accessing the resources that they need. Libraries can support people by helping them find the answers to their questions and giving them opportunities to meet others who are walking the same path, so that they don’t feel they have to make the journey all on their own.
You can browse the dementia-related books in our collection by going to our online catalogue (https://catalogue.gnb.ca) and typing some keywords in the search box. Some useful keywords to get you started: dementia, memory disorders, memory loss, Marlena Books.
For more information about NBPLS and our libraries, please visit our website at http://www.gnb.ca/publiclibraries.
]]>If you are out in public and happen to find a person who you might assume has dementia, what should you do? Today, we share some tips on how to handle the situation and reconnect them with their loved ones or return to their home.
If you find a person who you believe has dementia who approaches you asking how they could get home or if they are looking for someone and you do not know how to handle the situation, consider doing these things:
1. Introduce yourself and ask them what their name is. If the individual is not able to express their name to you, compliment them on their bracelet if it's visible and take a look to see if it will provide you with any additional information. Never assume anyone has dementia, so treat them as anyone else should be treated. Ask them how they are doing and gain a sense of trust. Additionally, not every person with dementia is an older adult, persons can be diagnosed as early as 40 years old.
2. Individuals with dementia who live in retirement residences or long-term care typically wear a bracelet identifying who they are and which room they live in. Individuals who reside in their own home might also have a MedicAlert bracelet that provides identifying information on it along with an emergency responder number. This might help in identifying the individual and seeking help for them.
3. Ask them who they might be looking for and offer your phone so they can call them. If they do not know the number, try doing a Reverse411 based on their name and find their phone number.
4. If they seem panicked and frustrated, offer them with some calm, reassuring words, and offer to help them get to where they need to be. Be friendly, non-judgmental, and avoid arguing. If a person does become aggressive, keep yourself safe and offer the help that you feel comfortable with providing.
5. If they cannot get a hold of their loved one, phone the police and inquire if there have been any calls about this person's whereabouts. Do not offer to drive the person to their home, it is best to try to contact their family members and authorities before leaving a location.
6. The authorities can meet you and help the individual return home or back to their loved ones. Remain a friend in this moment and reassure them while waiting for the authorities. Spark a conversation about something off-topic to help take their mind off of the overwhelming situation.
7. Wait for the police or relatives to meet the person at the location and make sure they are in good hands. Pat yourself on the back for helping this person return to their location or back with their loved ones safely. Your efforts will be very much appreciated.
]]>The first step is to speak with your loved ones' doctor about what options are available for your loved one during this next chapter along the journey. Your doctor will be able to recommend places, resources, and options for your loved one. It is important to include your loved one in this conversation. While they may no longer be able to fully understand the situation, it is important to treat them as a person, regardless of their dementia.
After speaking with your doctor, inquire about the options available and find the best one that will meet the needs of your loved one. Speak with relatives and friends and make an informed decision together. Refer back to your loved one's care plan on their previous wishes once they reached this stage.
A great way to get to know about hospice options are to visit the facilities and setup an appointment or tour. The best way to know whether or not your loved one will be comfortable is to visit and see the place for yourself. Are there things that they can offer your loved one that other places can't? Are there hospice care facilities that are specific to dementia or are well versed in dementia care? Is the care facility close to your family's homes or workspaces? Think about the various aspects involved that will be best option for everyone.
Once you have decided on the best option for your loved one, it is important to inform all family members in the case that your loved one does transition into hospice care soon. Notify your family if they would like to visit or be there to support you during this difficult time.
It is important to start packing the essentials for your loved one. This way you can be prepared before they have to move, making the process much easier for everyone. Are there favourite sentimental items that would be important for them to have with them during end-of-life care?
If hospice care looks to be in the near future, create tokens of love for your relative with dementia. What are some of the most important things to them and to you that you think will bring them a sense of comfort? Is it important to bring in their favourite music, pictures, or any other small items? Creating these tokens of love will help you to emotionally prepare for the next stage and reflect on your lives together and favourite moments.
Prior to the transition into hospice care, seek ways to gain support from others. This stage can be difficult and emotional, and it is important to have a support plan in place to help you through this time. The hospice you have chosen might be able to provide you with additional resources to help in the future.
Communication is essential when you think about the transition into hospice care. Communicate with your relative with dementia, your loved ones, and the care team and prepare yourselves for your loved one to enter hospice care. It is important to continue this communication throughout this next stage so that everyone is informed as emotions might run high.
Take the time to emotionally prepare yourself for this next chapter. It is important to practice self-care and while everyone grieves differently, it is essential that you take care of yourself. While you cannot prepare yourself for everything, take the time to reflect on yourself and the situation and how you can take the best care of yourself during this chapter and afterwards.
]]>Osteoporosis is a disease in which individual's present low bone mass and their bone tissue deteriorates. Ultimately, this increases the risk of fractures to the bones, with the most common being hip, spine, wrist, and shoulder.
Canadians are most often affected over the age of 50, however osteoporosis can affect anyone. Approximately two million Canadians are diagnosed with osteoporosis. 1 in 3 women and 1 in 5 men will experience a fracture due to their osteoporosis.
There is currently no cure for osteoporosis but treatment options are available to help reduce the loss of bone mass and the risk of fractures. The treatment options that exist are typically medications and individuals can speak to their doctors about finding what will work best for them.
Another important role in the treatment process is to maintain a healthy level of vitamin D and calcium within your diet. This will help to maintain healthy bones and should be done proactively throughout your life to reduce the risk of osteoporosis.
Be a person of support for a loved one with osteoporosis. Many individuals do not know they have osteoporosis because it is quite asymptomatic prior to a fracture. Be a source of encouragement for your loved one and support them if they experience a fracture. Encourage them to eat a healthy diet rich in Vitamin D and Calcium, and do so yourself. Participate in activities together that are safe for both of you. Join a support group if you are seeking more help or advice from others or need someone to lean on. There are many resources available through Osteoporosis Canada.
Research has found that osteoporosis and dementia are more prevalent in women. As such, it is important to stay informed of the risk of osteoporosis. If you are a care partner of a person living with dementia, ensure they continue getting the right nutrients. If you begin to think their bones are not as strong as they used to be or have experienced a fracture, it's important to speak with your doctor to have them tested for osteoporosis. Stay aware, informed, and know the risks involved. This will help to make the transition easier and to maintain your loved one's overall health.
What do you do to support people living with osteoporosis? Share with us in the comments below!
References
Osteoporosis Canada (2019). What is osteoporosis? Retrieved from https://osteoporosis.ca/about-the-disease/what-is-osteoporosis/
Osteoporosis Canada (2019). Treatment. Retrieved from https://osteoporosis.ca/about-the-disease/treatment/
]]>Digital health includes using technology to improve health care and offer more efficient, effective services for individuals. Digital health can be confidently shared amongst healthcare practitioners and clinics. It helps to keep track of an individual's health care and data without the hassle of paperwork. A client's healthcare record can be easily accessed and test results can be viewed much faster, meaning improved care for individuals.
For individuals living with dementia, this might help to transfer this information from memory clinics to their general practitioner as well as monitor cognition over time. As many individuals see a variety of doctors for their dementia diagnosis, it allows practitioners with faster results and an easier look into the individual's file.
While this process is still transforming, some clinics have taken the leap to shift to digital health records to keep track of their files.
What are your thoughts on digital health? Share with us in the comments below!
References
Canada Health Infoway (2019). What is digital health? Retrieved from https://infoway-inforoute.ca/en/what-we-do/benefits-of-digital-health/what-is-digital-health
]]>An obvious way to stay in touch with your loved one is through the telephone. However, we understand many individuals living with dementia face challenges communicating over the phone as they progress along their dementia journey. If your loved one is still able and willing to chat on the phone, make it a routine to call at least once a week and check in. Having a conversation will help them to maintain those social skills, which are very important for persons living with dementia. A phone call can help boost someone's mood and let them know you are thinking of them. Alternatively if your loved one with dementia faces challenges speaking over the phone, call a relative when you know they will be visiting with them. This might help to encourage more conversation with your loved one.
Another way to care is to use a videochat platform to stay in touch. This is also a great way to visually see how your loved one with dementia is doing and to communicate in other forms, such as through gestures and expressions. While your loved one might have a computer, this is an easier process when a relative, friend, or other care partner is also present to help set this up.
Caring from a distance can also be done through gifts or a small package. Send your loved one their favourite flowers, snacks, a photoframe, or another small item that will make their day. This will help them know that you are thinking of them and that you care even though you might not be right next to them. Make it personal and include a small card reminding them how much they mean to you.
Stay in contact with your loved ones' care network. Check in often and be available to chat when doctors appointments come up. Remain connected with the care network and share your thoughts if changes arise. Be a person of support for others in the network and let them know that you want to be as involved as you want to be. While you might not be there to offer a physical presence, it's important to let them know you want to be a part of the care network. Stay involved in the daily routine and know what your loved one participates in. Request to see their calendar to stay up to date on their care.
Find creative ways to stay involved through different opportunities. Is there another opportunity for your loved one to join to stay involved in their community? Have you come across any new information that you think your care network should know about? Find opportunities that might better support your loved one and that you can do from a distance.
Another great way to care is by staying up to date on the latest information about dementia. Attend educational sessions, find new products, or become involved in a support group. All of these aspects will help you to better care for your loved one and to understand what they are going through. This is also a great opportunity to learn more ways that you can remain involved from a distance and speak to other care partners about how you're feeling.
If you have learned anything new or have found any interesting opportunities for your loved one with dementia, offer this to your loved one and others in the care network. If asked for any advice, share what you know and your opinion. Be supportive throughout and understand that you are a team and help each other when needed. While there are many ups and downs along the dementia journey, it is important to keep your loved one at the forefront of their care and consider their interests and feelings. Your loved one's care will be impacted if there are negative feelings amongst their care network.
Remember to reflect on why you are caring and why what you are doing is important. Show your love for your relative with dementia and the care network. This will only help boost their care and keep everyone in a positive mood. If you notice someone in the network is feeling down, stressed, or burnt out, share your appreciation for them with a small pick me up or message reminding them of how great of a job they are doing.
Are you a long distance care partner? How do you care from a distance? Share with us in the comments below!
]]>The most preventable method to reduce the risk of falling is to clean up obstacles around your home that may increase the risk of tripping or slipping. For example, tidy up any clutter around your house and keep it away from your walking paths. Remove any rugs around your home that might be easily tripped over or secure them to the floor. A fun way to help declutter is to analyze your home with family members or friends and create a 'scavenger hunt' activity to identify any areas of concern.
Grab bars and assistive devices should be used for prevention, meaning it is a good idea to install them prior to any accidents occurring. For example, grab bars are easy to install near toilets, sinks, showers and bathtubs, or in your bedroom. They are a cost effective item that can be that extra support when you might need it most. If you begin noticing concerns moving throughout your home, think about using an assistive device, such as a cane or walker. Speak to your doctor about what you are experiencing and what they recommend for you. There are many resources available to help cover the costs of assistive devices, inquire about these options prior to purchasing a brand new item.
If you are willing and able, balance exercises are a great way to prevent falls and to maintain your physical health. Make an appointment with a physical therapist to learn some new balance exercises that you can implement throughout your day. These simple exercises can be carried out anywhere and are a great way to start your day.
Purchase a supportive, non-slip shoe that will help to reduce the chances of falling. Even if you are heading out the door to quickly grab something, always ensure you are wearing proper footwear. Investing in a good pair of shoes is definitely worth it and helps keep you safe.
With the change of seasons, there is also a change in sunlight. Setup your home so that there is adequate lighting and if you feel it is difficult to see at times, install more lamps throughout your home. LED lights are much brighter, last longer, and are much more efficient. Consider installing LED lights in your home. Additionally, leave a light on when you go to bed. In the case nature calls overnight, this way you will have light to help guide you. Another way to help light your home is through the use of nightlights or lights for your outlets. Adequate lighting in your home is important not to trip over anything and to see where you are going.
This is a great installation no matter your age! Non-slip mats help to protect us when getting into and out of the shower or bathtub and provide an extra cushion throughout. They are a great safety feature to install and are relatively low in cost.
Individuals who might not be getting all of their nutrients or are dehydrated often feel faint or dizzy. A way to avoid these feelings especially with age is to maintain a healthy diet and to stay hydrated. Ensure you are getting the proper nutrients you need and keep an eye on your sugar levels and your blood pressure.
If you recently started a new medication and notice feelings of faintness or dizziness, reach out to your doctor and express these side effects. They can help to mitigate these side effects or change your medication so that you have a lower risk of falling.
Lastly, if you ever encounter a fall, it is important to know how to fall safely to reduce the risk of injury. Speak with your doctor or physiotherapist on tips to falling properly and safely. These most often include staying in a bent position, protecting your head, and positioning your body in a way that will lead to the least amount of injuries. Do not be afraid of falling but rather know how to fall and prevent injuries before they happen.
What do you do to prevent falls? Share with us in the comments below!
References
Government of Canada (2014, April 10). Seniors' Falls in Canada: Second Report. Retrieved from https://www.canada.ca/en/public-health/services/health-promotion/aging-seniors/publications/publications-general-public/seniors-falls-canada-second-report.html#s1
]]>If you recall, last year we won the National Impact Challenge and were invited to come back this year to participate in another conference. This year's theme was Exploring the Future of Technology, where panelists and presenters explored where technology and the aging sector are headed in the decades to come.
As always, the conference was inspiring and motivating. It is encouraging to be surrounded by so many like-minded people who share the passion for improving quality of life for older adults and exploring how innovation can contribute to these improvements. Some takeaways from the conference include:
Many speakers at the conference shared research or trials involving older adults using technology. The response is overwhelming, not only can older adults use technology, but it also helps them with day-to-day tasks and enriches their lives. Older adults with cognitive, vision, and physical impairments all showed conference goers how technology improved their lives. The above photo and statistic proves that older adults are confident using technology and are excited about the benefits it can bring them. However, there is room for improvement in how we assist older adults onboarding to health and wellness platforms. The big takeaway here is that innovators should be developing technologies that keep older adults in mind.
Although older adults have proven they are both interested in technology and capable of using it, stigma is still rampant. Older adults can be stigmatized by the media, family, friends, staff in care centres and even the companies creating technological products. We have experienced this stigma in our own work, and are actively working to educate communities on how to reduce stigma. Researchers and older adults both shared examples of stigmas older adults face, including the inability to participate in research, use technology, or be independent. This comic included in the conference registration packets summarizes our feelings well!
The AGEWELL conference is always a mix of researchers and innovators sharing emerging research and startup innovations. When you sit in on both types of sessions, the two almost feel like they couldn't be further apart in practice. A group of researchers using specific processes to conduct research, gaining ethics approval and submitting papers to journals to mostly be read by other researchers and academics. VS a group of innovators who are quickly implementing beta units, learning as they develop, and working directly with their target markets. Yet as I sat in on panels that involved both researchers and innovators it affirmed what I have learned working on Marlena Books. Innovators and researchers must work together to develop quality products that will improve the lives of older adults. Without innovation research is often never brought to life, and without research innovation cannot pinpoint which areas to work in. Many teams at AGEWELL are multi-disciplinary, with a strong focus on both innovation and research; very inspiring!
I had a great time at the AGEWELL 2019 conference in beautiful Moncton and learned a lot. I'm excited to go back next year!
]]>Sure! I work as assistant professor in the Department of Recreation and Leisure Studies at the University of Waterloo in Ontario, Canada. I am interested in critiquing social structures and processes that reinforce difference and marginalisation (e.g., what it means to navigate the world living with a dementia diagnosis). As a community-engaged qualitative researcher, I sit on a diversity and inclusion in long-term care advisory board with the Centres of Learning, Research, and Innovation to advance the inclusion of all living in LTC homes in Canada. I value working collaboratively and creatively to amplify Othered meanings of identity, leisure, labour, care, aging, and well-being. I am inspired by all people and their passion stories and I look to influencers of anti-racist feminisms, decolonial/restorative practices, and post-identity literature/art to inform my work. I am interested in diverse forms of listening and telling story. For both work and leisure, I engage locally in human book clubs, digital storytelling, and porch chats. In my community, I am committed to social change and justice efforts through inclusive arts, organisation/activism, and transformational inquiry.
Dementia is a biomedical label affixed to individuals who experience gradual changes in the brain that are associated with memory loss and other symptoms. This diagnosis has created dementia archetypes. For example, dementia is commonly associated with a loss of agency, increased dependence, and individuals who are older. This said, a lot of social stigma continues to surround the disease of dementia and individuals and families who live with a dementia diagnosis. When I think of dementia, I think of social impacts the diesease of dementia has on individual life stories, social relations, and our society as a whole and the ways individuals living with dementia challenge stereotypes and create hope for Others living with dementia.
I approach dementia as a real biological disease with far-reaching social implications.
Well, I would say that my research related to dementia has changed a little over the course of my short career. Initially, I was interested in long-term care home resident wellness. With residents living in long-term care, including residents living with dementia, we created a shared understanding of what wellness looked like for residents by residents with perspectives from staff, family members, and volunteers. This co-created understanding of wellness facilitated conversations about how important one's relationships, perception of the home environment, self, and leisure were to feeling well in long-term care homes.
Now, I've shifted to understand wellness from a different perspective; that of care partners, specifically personal support workers employed in LTC homes. Often, individuals in helping professions, like care work, are overlooked despite intentions to care for all involved in caring relationships. I see that the issues that LTC homes have are systemic and care workers do all they can to support individuals living with dementia. Burnout and understaffing is common and, when incidents in LTC homes happen, PSWs are often scapegoated while systems - that create conditions for such issues to occur - are rarely critiqued harshly enough for the gaps in care that exist. I think everyone has a role to play in enhancing the social infrastructure of dementia care.
Like anything else, an academic understanding of dementia (specifically, the label of dementia and its bio medical markers) is typically presented 2-dimentionally. Too often, academic understandings are valued as prevailing truth and do not reflect the breadth of lived experience and narratives of dementia as it is lived in our complex social world. Professionally, I've learned to know dementia as only one part of an individual's identity and see it as a label that effects family, friends, care workers, and society as a whole.
Are the supports and resources for persons with dementia and their care partners enough? Why or why not?
Historically dementia was largely left unseen due to the stigma associated with the disease. Now, through the culture change work happening in LTC homes across Canada, which aims to destigmatize dementia and further humanize LTC homes as places to live well, we are seeing more and more resources become available to individuals with dementia and their care partners. Through the newly released dementia care strategy in 2019, Canadians have a better understanding of ongoing dementia care efforts and where the gaps are.
During my schooling, my time as a inclusive leisure practitioner, and now as a researcher I continue to learn from individuals living with dementia and their life stories. Teachings by individuals with dementia are profound and I continue to value the ways in which individuals living with dementia are their own advocates and continue forward justice movements on diagnoses related to memory loss. While I have not experienced immediate family affected by dementia, I've had first hand experience with the dementia journeys of individuals I've worked with and am aware of the amplified challenges faced by individuals living with dementia and their families in underprivilieged countries outside North America. Dementia affects society as a collective and we all have a responsibility to support efforts to reduce dementia stigma and support the fullest expression personhood for every individual, dementia diagnosis aside.
Thank you Dr. Lopez for sharing your perspective and weighing in on the conversation. Weigh in on our discussion in the comments below!
]]>The symptoms of depression are quite similar to those in dementia, including loss of interest, decreased mood, difficulties sleeping, an increase in confusion, and loss of appetite. However, this does not mean that the symptoms are the same and that persons living with dementia also have to live with depression for the rest of their lives. There are ways to help mitigate depression and cope with the diagnosis once you recognize the symptoms. If you begin to notice any of these symptoms or an increase in these symptoms, it is important to speak with your doctor and explore resources that will help your loved one.
Depression might arise due to a recent diagnosis of dementia, social isolation from activities your loved one previously participated in, embarrassment, increased fatigue, or side effects from prescribed medications. As a care partner, it is important to support your loved one and understand what they are going through. Encourage participation in new activities, develop a new routine, and know their limits. In doing so, this will not only better cope with feelings of depression but also help to reduce some of the symptoms associated with dementia. Individuals living with dementia should continue to participate in social and physical activities to remain cognitively stimulated and physically healthy. Physical activity, even a short walk in a nature setting, can increase endorphins, ultimately boosting a person's mood. This is not only beneficial for a person living with dementia, but also for care partners to help reduce stress.
While depression and dementia are difficult topics to approach in conversation, it is important to seek help earlier rather than later to gain support and find ways to cope. Simply asking how your loved one is really feeling and having a meaningful conversation with them might help to start the discussion on depression and dementia. Encourage individuals to share with you and support them in ways that they want to be supported. Persons will not accept help if they do not believe they need it. Be caring, kind, and understanding and do not be afraid to start the conversation.
References
Alzheimer Society of Canada. (2017, November 8). Depression. Retrieved from https://alzheimer.ca/en/Home/Living-with-dementia/Understanding-behaviour/Depression
heretohelp. (2013). Mental Health. Retrieved from https://www.heretohelp.bc.ca/infosheet/seniors-and-depression-the%20difference-between-depression-and-dementia
Muliyala, K. P., & Varghese, M. (2010). The complex relationship between depression and dementia. Annals of Indian Academy of Neurology, 13(2), S69-S73.
World Health Organization. (1992). The ICD-10 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organization.
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The leaves are changing colours and this is a great time to get outside and go on a short walk. Ensure to dress appropriately and know your limits. Whether it's a walk around the block or down a trail, autumn is a wonderful time to get outside and embrace the nice weather before winter comes!
Autumn brings a lot of new ideas for crafts! Whether it's carving a pumpkin, making an autumn centrepiece or wreath there are lots of crafts to create. This is a great way to spend time together, stay on task, and feel accomplished once you finish!
Some autumn days bring dreary, rainy weather. This is a great opportunity to read a new book, whether it's independently or together. Spend the afternoon reading and discussing. We offer many reading guides on our resources page.
As seasons change, you can try new fall recipes with your loved one. Assign tasks throughout your meal prep, and offer help where needed. You can assign tasks that highlight their strengths. Try to remain positive and encouraging, this will make for a good afternoon and an even better meal.
We offer resources weekly, and crosswords are always a fun activity that are cognitively stimulating. Follow this link for our latest autumn crossword.
The leaves are very beautiful this time of year, but raking them is not as fun! Spend an afternoon prepping your yard for the colder weather. Depending on your loved ones abilities, assign tasks that will make them feel accomplished and feel that they are contributing in a meaningful way. Whether that is piling leaves together, picking up sticks, or pruning the garden, assign tasks that they will enjoy and that they can do.
If you are planning on dressing up this year, create costumes together or spend the afternoon dressing up! This is always a fun activity and leads to lots of laughter.
What are some of your favourite autumn activities? Share with us in the comments below!
]]>Many persons with dementia might refuse to wash as they are unaware of their personal hygiene situation or may have forgotten that they have not showered. Some individuals might become frustrated or confused when told to bathe. It is important not to use a negative tone when approaching this conversation.
This is much easier said than done. Approach bathing or showering in a positive way and avoid making your loved one feel embarrassed. Encourage them to bathe in a kind manner as opposed to forcing them to bathe or raising your voice. Kindly guide them to the bathroom with all items prepared and encourage them to wash.
Another way to approach bathing is by demonstration. If you encourage them to bathe or shower as you are going to or have already done so, this will make the task feel less daunting. Individuals with dementia might need to see that others are doing it too before they can do it. One way to approach this is to say, "I just got out of the shower, do you want to shower now? It's available."
Ask them for help. Persons with dementia still want to feel that they are contributing and what better way then to participate in chores together. Even if they are not as helpful as you would like, encourage them to carry some items to the laundry room or to change into clean clothes after they shower. Ask them if they'd like to help gathering up the dirty clothes and ask if they need to put on a fresh outfit, then lead into having a shower or bath.
Visuospatial skills are affected when a person has been diagnosed with dementia. Sometimes we might not notice this, but if your loved one has to step over the edge of the shower or there is a bathmat outside of the shower, this might look as though it is a much larger step and be quite daunting for persons with dementia. If individuals require more assistance, think about installing grab bars or seats in your shower to make it more accessible. If persons with dementia feel the shower setup is not safe for them to use, they simply won't use it.
Purchase a new shower product for your bathroom. Ask your loved one with dementia if they have seen a new product you purchased and lead them into the bathroom. While in the bathroom, ask if they would like to try it out and bathe or shower. Sometimes this draws their attention to a new item and individuals might want to shower to use this. Another incentive is to setup a radio on your bathroom counter and play their favourite music. This might help to ease their mind and put them in a happier mood. As a result, they might be more willing to shower alongside their favourite song.
Hang a calendar in your bathroom or in another room in the house. Write down on the calendar the days you plan on showering and encourage your loved one to have their name on the calendar too. This creates a reference point for persons with dementia as you encourage them to shower on Tuesday, you can look to the calendar and hold them accountable. Developing a routine is important for persons with dementia and makes tasks seem familiar to them, in which they will most likely continue to follow this routine without hesitations.
If you and your loved one with dementia attend a weekly social group, run errands together, or visit family members, encourage them to bathe prior to these events. Approach this by getting ready together and reminding them that they want to look fresh for a new day. Choose an outfit for them to wear that makes them feel comfortable and confident. Encourage them to change into the outfit once they have bathed. Hold them accountable for this and do not leave the house until they have gotten ready.
If you have tried many of these strategies, or your loved one with dementia might need more assistance bathing than you can provide, it might be time to consider hiring help. There are many home care companies who bring employees into the home, build a relationship, and help to bathe your loved one with dementia if they need further assistance. This also offers care partners with an hour or two to get caught up with things around the house or to take a break. Reach out to the Alzheimer Society, home care companies or your local LHIN and see what options there are for you and your loved one.
Helpful Resources:
Ontario LHINs: http://www.lhins.on.ca
Alzheimer Society of Ontario: https://alzheimer.ca/en/on
Community Support Connections: https://communitysupportconnections.org/services/care-coordination/
Home Care Assistance: https://homecareassistance.com
]]>Arthritis is a term that describes joint inflammation, leading to redness, swelling, pain, and stiffness. Arthritis can affect any joint in the body, but most often impacts the hips, knees, or spine. Arthritis is a chronic condition, meaning that individuals are affected over their lifetime and it is through treatment options that individuals with arthritis can continue to live well.
The symptoms of arthritis can be mild or severe, depending on each individual person. Typical symptoms of arthritis include chronic pain, fatigue, limited mobility, decrease in mood, and can affect individuals in episodes, meaning they are experiencing symptoms so much that it impacts their quality of life.
While there are many different types of arthritis and it affects individuals so differently, it's important to speak with your doctor and start a treatment plan for arthritis. Some treatment options include medications, surgery, physical activity, physical therapy, joint protection, hot and cold therapy, and many others. It's important to be aware of your pain and contact your doctor if you experience any new symptoms.
For individuals with arthritis, it is possible to continue to live well. It is important to take charge of your health and know your limits. Many individuals find new activities that help to ease their pain and continue their engagement in their communities. It's important to find strategies that work for you and to recognize your pain and stop to prevent further pain. During daily tasks, it's essential to take breaks, stretch, and rest when necessary.
Arthritis for persons living with dementia might make a diagnosis more complex. However, if persons are diagnosed with arthritis prior to their dementia diagnosis, having a treatment plan is essential to continue managing arthritis with dementia. For individuals who might develop arthritis after a dementia diagnosis, as a care partner it is important to recognize the symptoms of arthritis and notice if a person with dementia is experiencing pain during certain situations. If they begin to hold their wrist, back, or knees during activities, schedule a doctors appointment and inform your doctor of these symptoms. While some persons living with dementia will be able to express their pain, others who are further along their journey might not be able to. Creating a treatment plan with your doctor can help to find a schedule and treatment regimen that works to help prevent pain or further worsen an arthritis diagnosis. It's essential to ask your loved one with dementia where they are experiencing pain and help them to find a plan that helps to ease their pain.
As a way to better support people who have arthritis, it's important to recognize the signs and not encourage individuals to overdo it on certain activities. Help individuals to find the right treatment options for them and support them through this plan. Be a supportive friend, family member, or neighbour and offer them with help where necessary. For example, is it more difficult for them to garden, cook, or do other activities? Offer them with some extra help or bring them a meal once in a while. Offer to engage in new activities with them, such as swimming or light walking. Living well with arthritis is possible and finding solutions to help manage arthritis and pain can help individuals to do so. For persons living with arthritis and dementia, there are more complexities involved, but the same thing remains the same, be there for your friend, relative, or neighbour and support them as best as you can.
]]>If you are planning on bringing your loved one out of long-term care this holiday, it's important to know the protocol ahead of time. This way, it helps to reduce added stress on that day. Check in with staff on the floor and ask them what they might require from you in advance.
At the same time you are asking about protocol, if your loved one takes any medications, be sure to ask if they provide them with you on the day of or if they can take them before they leave. It is important to consider their medications and make sure they take them on time.
Where will you be bringing your loved one? Will it be accessible to them? Is there anything that you might want to setup before the holidays so you are not forgetting anything? It's important to think about accessibility for your loved one and how you can best support them now that you are away from their care home.
It is also important to think about transportation for your loved one. If they require a wheelchair, look into accessible taxis and make a plan ahead of time.
Are there certain items your loved one needs daily? Will you need to provide them with any toiletry items? Compile a list of items to pack in advance so that you are not forgetting anything. The autumn weather tends to fluctuate, and so it's a great idea for your loved one to dress in layers in case they become too hot or cold, they will be prepared for it.
If you are having your loved one over for Thanksgiving dinner, ensure to think about their meal preferences. It's helpful to have a blender available in the case that you need to mince or puree any food.
Are there certain activities your loved one with dementia enjoys doing? Thanksgiving might be an overwhelming time so it is important to have some activities available for them to engage in if they became overwhelmed or frustrated. This can help them to remain relaxed and stay occupied if others are prepping the meal. One of our favourite activities are our MadLibs, they are a great activity to engage in independently or with others.
Throughout the day, check in with your loved one, make sure they are comfortable. Stay proactive to help mitigate any negative behaviours associated with dementia and remember to remain calm and relaxed to reduce any frustrations.
Last but not least, while there are many things to consider, having your loved one over for Thanksgiving is a special time! Take photos that you can cherish and make memories. Enjoy the moments you spend together and reflect on what you're thankful for.
]]>We've had some dedicated members who want to continue engaging in their community and maintain their cognitive stimulation. We refer to the book club as "exercising our brains" as we engage in discussions and read together. This type of exercise is much more fun than physical exercise! So far, we have had individuals write their own stories and we have read some historical novels, books from the Marlena Books collection, and engaged in various activities together. We chat about stories, plot lines, and what makes books interesting and not so interesting. Sometimes we get carried away chatting about our lives and what we did over the week. We cater our programming to the preferences of our readers involved and want to continue to improve our club to meet each person's needs.
The Marlena Books Reading Club is open to individuals in any stage of their dementia who want to continue reading, engage with others in interesting discussions and just have fun! We are an inclusive group and do not judge others for their diagnosis and we do not focus our discussions specifically on dementia.
Interested in becoming a member? Reach out to karen@marlenabooks.com or call us! We would love for you to join our weekly discussions!
]]>As we move into a new month, it is important to recognize that Alzheimer's doesn't go away after September. We can support individuals as they progress along their dementia journey. We can continue to celebrate persons living with dementia and the touching moments we can continue to have with them, but also recognize their hardships. We can continue to empower persons with dementia to engage in activities beyond dementia and recognize their personhood and citizenship in their communities. And we can also continue to find new, innovative ways to improve their quality of life.
So while September is almost over, we want to take one last moment to celebrate and honour persons living with dementia. We want persons with dementia to feel included, supported, and to understand they are not alone on this journey. At the end of today, share with your relative, friend, or loved one with dementia why you celebrate them, reflect on the special moments together, and share in conversation and laughter together.
]]>The current law does not allow for persons living with any mental illnesses, including dementia, to make decisions about assisted death. This law states that persons must be competent upon making this advanced decision and right before medical assistance in dying. While people with dementia are typically quite competent in the early stages, unfortunately as their dementia progresses, they are no longer seen as competent enough to make decisions about their end of life requests. This poses a variety of challenges for people living with dementia and their families. Many persons living with dementia are challenging this law as a way to take charge of their lives and make requests based on their own choices.
There are many challenges to this as persons with dementia should make their own choices about their health but need to be provided with a safe, legal space. Some persons with dementia feel that they want to take control of their dementia and receive medical assistance in dying prior to late stage dementia. Others might not want their relatives to make decisions for them. Many challenges can arise if others make decisions on their behalf, and it is important for persons with dementia to have their wishes heard and understood. Some relatives might abuse this advanced request and it is important to know that many persons with dementia live well in their communities for many years after diagnosis, and it would be upsetting for them to receive medical assistance in dying if they did not make that choice. This becomes a difficult conversation to have.
In order for persons living with dementia to receive medical assistance in dying, the law must change. But it is a challenging situation, as many persons with dementia deserve to have rights, but also deserve to be treated equally and fairly by the people closest to them. To begin this discussion, it is important to discuss your health wishes with your loved ones early, this may be before diagnosis or immediately after diagnosis. Meet with a legal consultant and inform them about your wishes about your own health. That way, the family has this information legally written down and understands a person's wishes in the future. While medical assistance in dying at this time is not possible for people living with dementia, it is important to understand that many persons living with dementia can live well in their communities for many years, with the support of various resources that are made available to them. Thus, at the present time, support your loved ones with dementia and help to maintain or improve their quality of life. Reach out to others for support and have a discussion with your physician about various resources and options fit for your situation.
References
Alzheimer Society of Canada (December 12, 2018). Medical assistance in dying for people with dementia: Position statement. Retrieved from https://alzheimer.ca/sites/default/files/files/national/position-statements/medical-assistance-in-dying-for-people-with-dementia.pdf
CBC News (September 29, 2018). Ontario man with dementia on crusade to plan his own death. Retrieved from https://www.cbc.ca/radio/thesundayedition/the-sunday-edition-september-30-2018-1.4841264/ontario-man-with-dementia-on-crusade-to-plan-his-own-death-1.4841267
Government of Canada (April 25, 2019). Medical assistance in dying. Retrieved from https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html
]]>While many persons living with dementia might live in assisted living facilities, there are also many individuals who still reside in their homes in their communities. It's important to consider this - not everyone who is diagnosed with dementia immediately moves into assisted living. Many individuals continue to live at home, engage in community programs, and participate in activities that they always have.
Dementia is an invisible disease, people cannot always see it. And it is this invisibility that contributes to the stigma that many individuals face. Thus, while being a community member, you might not always see that a person is living with dementia, you might see their different behaviours or hear their repetitive words. It's essential to never make assumptions about a dementia diagnosis, but if you start to notice signs that could be dementia, engage with an individual in a similar manner that you always would, but perhaps provide them a bit more time to respond, prompt them if they need, and be understanding and patient. It is through these strategies that you can better support everyone living in the community, as well as people living with dementia.
As a person with dementia, care partner, care staff, relative, or friend, I encourage you when you hear someone within society using stigmatizing language when talking about dementia or someone living with it, to challenge their perspective. Ask them what they think dementia means and perhaps share a story of an experience with a person with dementia. While dementia is a challenging disease, it's important to consider that people living with dementia are still people, they have thoughts, feelings, and opinions and deserve to be treated fairly within society. So the next time you hear someone speak about a person with dementia as confused, helpless, or crazy, challenge their perspective and let them know that just because a person has dementia, this does not mean that it defines who they are as a person. Together, we can create communities that are more dementia friendly and continue to better support persons living with dementia.
1. Alzheimer Society of Canada. (March 7, 2019). Dementia numbers in Canada. Retrieved from https://alzheimer.ca/en/Home/About-dementia/What-is-dementia/Dementia-numbers
]]>If you notice your loved one with dementia is frustrated or confused, it is important to recognize this and help to redirect them back to a calmer, safer place. Encourage them (and yourself) to take a few deep breaths. Have them look in your eyes and help to reassure them and make them feel safe again. Tell them where you are, who you are, and provide them with time and space to understand these things. Reflect on an enjoyable, relaxing time you had with them. Perhaps have them sit down, take a few deep breaths and let them know you are there for them. Ask them what caused this frustration and confusion and help come up with a solution or introduce a new task that is calming for them.
If you begin to notice your loved one is frustrated and confused, ask them if they would like to engage in a different activity. If you used to love drinking tea with them, offer them a tea, redirect their negative emotions, and start a new conversation. For example, if they become frustrated in a certain situation, take them out of that situation and put them in a new, more comfortable one. Perhaps they have become frustrated as a result of overstimulation. Take this time to engage in a more relaxed, calm activity, such as reading, talking, or going on a walk. This will help them to de-stress and feel comfortable. Maybe they need time to rest and relax, not everybody has a good day every day, and this is no different for persons living with dementia. It is important to always ask your loved one about what they would like to do and encourage them to express their preferences. Keeping them at the forefront of their care will help to keep a positive atmosphere.
It's important to remember activities they enjoyed doing, as many persons living with dementia maintain their leisure preferences regardless of their dementia diagnosis. If they always enjoyed puzzles, chances are they still do. Find ways to make these adored activities accessible to them and modify when necessary.
If your loved one with dementia is impatient, stubborn, or wanting to move on to something else but is in the middle of a task, help to redirect them back to the task, if it must be done. For example, if they must finish getting dressed, redirect them to a small step of that activity and reassure them that they are doing a good job. Perhaps encourage them to finish before having to move onto something else. Take a break, talk about a part of the task and then come back to it and focus on that. This makes large tasks much more manageable.
If you notice that the mood has become much more negative and filled with frustrations, help to lighten the mood. Make a joke, laugh about a memory or story, or just laugh. Laughter will help to lighten the mood and create a happier atmosphere.
Being a care partner takes patience. It is important to practice patience and know yourself. If you find yourself becoming frustrated or annoyed, practice calming exercises that you know will help to relax you. Perhaps taking deep breaths, leaving the room for a few minutes, laughing, or crying. Do what you must do to take care of yourself, then once you have regained your composure, reintroduce yourself to the situation. This will help to avoid any negative emotions toward one another and help with your own self-care.
If you begin to notice your loved one with dementia is no longer comfortable or their behaviour is beginning to shift, bring in things that are familiar to them. Could you tell them a familiar story? Could you offer them a familiar item? Could you remind them of something in the space that you have in your own house or something they have seen before? Think of things that are familiar to them and bring them in, point them out, and be there for them.
What ways do you help to redirect your loved one with dementia? Share with us in the comments below.
]]>I'm very close to my mom and visit as often as I can. She lives in a wonderful LTC facility and is very content! She really doesn't know that she doesn't know and is usually happy and content! She still recognizes me and says my name on occasion - that happy smile and greeting when I arrive still melts my heart!! My mom was always very organized, to the point of being obsessive compulsive - she still loves to sort things - I bring in sectioned containers and she sorts popsicle sticks, pipe cleaners, jewelry, etc. and she likes to fold also and has a basket of bright coloured washcloths to fold and sort! She loves music and likes to participate in programs from a distance! My mom loves ‘babies’ and has her own Alzheimer’s doll that she loves to hold & cuddle!
I would say for my mom, she is more content than she has ever been! I work in LTC & have dealt with many types of dementia, both good & bad! It’s nice to be able to visit my mom at her facility & just be the daughter - it is so simple to please her & make her happy - I love every moment I spend with her & these times are precious!! We totally live in the moment during our visits! She doesn’t speak a whole lot any more but when she comes out with something like, “you’re so cute” melts my heart ❤️ We laugh at simple little things and hugs go a long way!!!
If you’ve met one person with dementia, you’ve only met one person with dementia!! Each person can be so different - there are many common characteristics but each person presents so different! I am so thankful that my mom is happy and content!! But those rare moments that she’s angry or upset, it’s hard not to take personal but we have to remember that it’s the disease and not the person! It’s best if we can always remember who our loved one was & that they are still there, deep inside!! ❤️
By embracing my mom with so much love & be participating in the many Alzheimer’s coffee breaks!!!
I have a special passion for those with dementia, long before my mother was diagnosed .... I have a dementia studies diploma and love working with those with dementia. Never expected to have it in my own family but has made me even more compassionate especially at work because I always thing “what if this was my mom?” It’s hard walking that line if working in the field & living it also but I choose to visit my mom over an hour away, 1-2 times per week & always smile - hard to say goodbye sometimes but she has great staff watching over her so I take comfort knowing that & knowing she won’t remember being sad or saying goodbye! Alzheimer’s is a sad, unforgiving disease but I still have my mom & she’s not suffering at all - she’s happy and content and that’s huge!! I love, admire & respect my mom so much! She was an awesome mother who had a lot of struggles! Its my turn now to give it back!! ❤️❤️
Thank you Cher and Dori for sharing your story. If you have a story you would like to share about a loved one you "Alzhmire" fill out this form. Happy World Alzheimer's Month!
]]>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
]]>Frontotemporal dementia (FTD) is a type of dementia that typically affects individuals under the age of 65. FTD affects the frontal and temporal lobes of the brain. These lobes are responsible for a person's behaviour and personality. As such, FTD might affect a person's behaviour and personality, speech, and mobility.
Men and women can be affected by FTD, and people diagnosed with FTD are typically aged 40-45. It is still unclear as to how individuals develop FTD, some reasons can be due to a genetic mutation and in the rare cases, FTD can be inherited.
Individuals who are diagnosed with FTD are often much younger than individuals diagnosed with other types of dementia and this can lead to different challenges. For many, individuals with FTD are still working, supporting their families and children, and have many responsibilities. As with many forms of dementia, their driver's license is often lost due to diagnosis. This poses a variety of changes for individuals living with FTD. What is important is maintaining involvement in tasks and having a regular routine.
Some individuals living with FTD might have to take a step away from work and from other duties, as they progress along their dementia journey. However, this does not mean individuals living with FTD must retract from their community. It is important to stay involved, physically, socially, and mentally. Participating in physical activities that they have always done is important to maintain their physical abilities. Participating in social activities is also very crucial for persons with FTD as they can maintain their social skills and still engage with others. Lastly, it is also important to maintain cognitively stimulated and exercise your brain.
There are many ways to stay involved. While many adult day programs for persons with dementia are catered for older adults, there are different options for persons with FTD to socialize. For example, persons with FTD can volunteer in their community or join a group. We love the YODA program and their involvement and advocacy work in our local area. We also recommend the Golf-Fore-Life program in the Kitchener region, this is both a social and physical program for persons living with dementia. Check out other adult day programs in your area and see if they are the right fit for you. Some programs have a younger clientele, attend different programs to find the best one that suits your needs.
It's essential to maintain physical activity, as this helps to improve quality of life, boost your mood, and stay physically engaged. If individuals with FTD participated in sports prior, it's important to remain integrated in that activity or try out new activities. Engage in a regular exercise routine, even if it's just walking, to get out of the house and stay physically active. Have a friend, teammate, or family member offer a ride for you and schedule physical activities into your daily calendar.
While there are many changes that might occur for persons with FTD, it's important to support the person and be there for them. While their personality and behaviour might change over time, they are still that person that you've come to know and it's important to treat them the same way.
Engage in similar activities as you did before they were diagnosed. This makes it easy to engage and converse. If a person's behaviour changes, it's critical to keep in mind that it is not their fault, it is the diagnosis that might affect their behaviour. Many individuals often refer to dementia as the 'uninvited guest', which is quite relatable. While the guest might not be invited over, know that they are there to stay and learn to work with them. Practice different skills that might allow you to connect in a different way. It's important for persons with FTD to know that you are there to support them in the same way that you always were and remind them that it is not their fault and be open with them.
You might face challenges connecting socially with a person with FTD as their behaviours and speech might change. Find ways that spark social connections and you might find this gets easier if you know how to approach conversations. Storytelling is always a great way to start conversations, as most individuals are able to reflect on their memories, but might face difficulties expressing themselves. By sharing a story of certain memories with a person with FTD, it will help them reflect and initiate a conversation. Or, tell a story about your day and events that took place, this might spark other conversations. Another way to stay socially connected is by engaging in activities with them. Some ways are to share in games, movies, crafts, etc. to stay socially engaged but also maintain their cognitive stimulation and keep their brain active too. One of the best ways to support persons with FTD is through social connection. It is through this process that individuals have to process what is being said in the conversation, understand this knowledge, and then form a response that adds to the conversation. While it might take a little bit longer to engage, know that this activity is very important in maintaining their brain health.
It is important to not only care for the person with FTD along their dementia journey, but also to take care of yourself. Establish a support network and reach out to others who are experiencing a similar situation. Include your family, friends, paid care partners, and neighbours in your support network and work together to provide your loved one with the best care.
Your loved one with FTD might face challenges engaging in a routine if they are no longer working, driving, or partaking in daily tasks that they might have previously done. Develop a routine for your loved one and create a schedule of activities to maintain their involvement in daily tasks. Persons with dementia are best supported if they are in a familiar, regimented environment so that they can maintain a sense of accomplishment and dignity. If they choose to participate in an adult day program, schedule that into their calendar. If they participate in physical activities twice a week, schedule that into their calendar. If they have specific times to take medications, engage in speech therapy or physical therapy, schedule this into their daily agenda so they are reminded of the tasks for the day. While individuals living with FTD might face challenges expressing themselves, they are still cognizant of time and establishing a routine will help them stay on track.
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 are younger than we typically think 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 dementia to live well.
If you are out in public and notice that individuals are looking at you, not knowing how to engage, or using stigmatizing language, offer them one of our resource cards and educate them that dementia looks different for every person. This might help to improve their customer service skills and raise awareness on FTD.
Another way to educate ourselves and others is through educational sessions by the Alzheimer Society. These sessions help inform individuals on the signs and symptoms, ways to cope, and resources available. Reach out to your local Alzheimer Society for sessions available in your community.
If there are little resources available in your community for your loved one with FTD to stay involved, approach your local MP, your city, or your local Alzheimer Society and request more inclusive programs for persons with FTD. Together, we can create opportunities that support persons living with any type of dementia and help to improve their quality of life.
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
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My Nanny and Grampie are two of the most unique individuals that have made an impact on my life. I grew up witnessing a constant connection of genuine love between them, they were inseparable and still are to this day. Although they are a true pair they have many differences that make them each unique. My Grampie has always been the more serious of the two, but will drop whatever he's doing and help me in a heartbeat if I need it. My Nanny on the other hand, has a silly side as she was always smiling and doing something to make her grandkids laugh. To this day, I would say they have the biggest hearts possible and have conveyed these beautiful traits onto their children and grandchildren tremendously.
Something I always did with my grandparents together was have sleepovers at their house. I would get so excited to do simple things with them like play board games or watch their favourite shows as we drank tea. When it was just my Nanny and I, you could always find us shopping and then I would come home with way more than needed just because my Nanny couldn’t resist! One of my Grampie's favourite things to do is watch the horse races. I have many fond memories of watching them on television or live with him. He would get so excited about which horse was going to win the race. My Grampie still loves this activity and this is something we still try and do when the family is free.
One of my most adored memories with my grandparents is when I would get to tag along with them to their favourite restaurant, Red Lobster. Not only was this a treat for me, it was also a place my grandparents visited so often that they knew almost everyone who worked there. We were treated like royalty and my Grampie always made sure I got an endless amount of cheese buns, which I would always take home with me for a treat later. Although this memory isn't something that sounds very adventurous, it is something that has stuck with me because it was a time in my life that I constantly looked forward too. To this day I would still say Red Lobster is a favourite restaurant of mine and I always make sure to get extra buns.
Being the extremely wise individual my Nanny was, she was always pouring as many tips, tricks and advice into me as she could. One piece of advice I remember the most is to keep trying no matter how frustrated I get with something because eventually things will work out. My Nanny was always involved in the church and it was her words and encouragement that always pushed me to be involved in the church whether it was when I sang or played the piano for everyone that day.
Having a grandparent with dementia is still something that I find very confusing to describe. In the beginning especially, it is very difficult to slowly lose one of your best friends as they start with forgetting about your recital next week, but not long after they have trouble remembering your name. This process was especially hard as my Nanny would suffer too as she became more and more frustrated and confused with what was going on with her. Presently, my Nanny is in a very late stage of dementia which requires full time care. Although I grieved the loss of her mentally and emotionally, many times the love is still there and will never be gone and the physical connection I can still have with her is something I am entirely grateful for.
To anyone else who has gone or is going through a similar situation like my family, I want you to know that this disease does not define your grandparent. Don't give up loving them unconditionally as you did before this disease. Remember them as the grandparent you grew up with and adored and always wanted to be like. Keep fighting to find a cure for this awful disease so hopefully less and less people will have to endure the specific pain of losing a loved one.
Happy National Grandparents Day to everyone whether you know someone fighting this disease or not. I encourage you to cherish the time you have with the people around you and although it is hard, just remember that everything happens for a reason. Don’t stop fighting. I love you Nanny and Grampie. Forever and always.
]]>Signs associated with dementia:
Unfortunately we live in a very biomedical world in which persons diagnosed with dementia are ultimately thought of to be in the 'end stages' of their journey, where they cannot understand, are unable to express themselves, and are no longer able to advocate for themselves. Unfortunately, this is not the case. Persons with dementia are still able to live well and it is through advocacy and challenging stigma to provide persons with dementia with more opportunities to improve their quality of life while living with dementia.
Care partners have also expressed to me that once their loved one was diagnosed with dementia, doctors began speaking directly to care partners about their loved ones health, rather than speaking directly to the person with dementia. It is important that if you see this, to advocate for your loved one and politely express to the doctor that they should be speaking and looking at the person who has dementia, to not ignore them or dismiss their presence.
How do you advocate as a person with dementia or as a care partner? Share with us in the comments below.
]]>A dementia friendly is "a place or culture in which people with dementia and their carers are empowered, supported and included in society, understand their rights and recognize their full potential”(Alzheimer's Disease International, 2016, p. 10).
Dementia friendly communities:
Social networks are essential for persons living with dementia to live well (Innovations in Dementia, 2011). Dementia friendly communities include social opportunities that are inclusive for persons with dementia. Dementia friendly communities reduce stigma and discrimination as they showcase that persons living with dementia can still engage in social and leisure activities. Dementia friendly communities encourage access to community activities that meet the needs of both persons living with dementia and their care partners. So, if we create dementia friendly communities, we are making more accessible, inclusive environments that might benefit other members of the community.
Canada has responded to the worldwide calls for dementia friendly communities by implementing Dementia Friends Canada in 2015 (Alzheimer’s Disease International, 2017). Dementia Friends Canada creates awareness, reduces stigma, and encourages inclusivity for persons with dementia in their communities (Alzheimer’s Disease International, 2017).
There is still work that must be done to truly become dementia friendly, but with the development of more local programs in the region, we are taking steps to becoming a dementia friendly community. What does your community do support persons living with dementia? Share with us in the comments below!
References
Alzheimer's Disease International. (2016). Dementia friendly communities: Key Principles. Retrieved from https://www.alz.co.uk/adi/pdf/dfc-principles.pdf
Alzheimer’s Disease International. (2017). Dementia friendly communities: Global developments (2nd Edition). Retrieved from https://www.alz.co.uk/adi/pdf/dfc-developments.pdf
Innovations in Dementia. (2011). Dementia capable communities: The views of people with dementia and their supporters. Exeter: Innovations in Dementia.
]]>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.
]]>If you notice signs of agitation and discomfort, stay with your loved one with dementia and ensure they feel comfortable in the space. Offer your loved one with dementia something, a beverage or snack or item that will help them remain calm and comfortable. Perhaps if you are meeting people, include everyone in the conversation and keep conversations light and enjoyable for all individuals.
Spot new things around the room and have a conversation about them, this does not have to be complex and can include things like the weather, artwork, or items in the room. Discuss topics that are unrelated to your home and try your best to enjoy the moment. Storytelling is a great way to start conversations. You can simply discuss an event that happened recently or a funny story. Humour will help to lighten the mood. You can also engage in a short activity together, bringing a Marlena Book along with you is always a great idea to provide them with an activity they can do with you or independently.
If your loved one with dementia is asking to leave, show them the time and share that the time has not come yet for them to leave if it has not. Reduce conversations about time, unless asked, this will only contribute to feelings of agitation and keep them looking at the clock.
If your loved one with dementia continues to discuss leaving, redirect the conversation. List tasks that have to be completed before going home or bring up different topics that you know will spark conversation. Involve them in the tasks that need to be completed and this will offer them a sense of purpose and meaningful engagement.
Sometimes a new place can be quite overwhelming, regardless of a dementia diagnosis. Find a quiet space and take some time to relax without noise or stimulation. Participate in breathing exercises or calming movements to reduce agitation and frustration. Have a quiet conversation and ensure their comfort.
If these strategies are not working and your loved one becomes upset, it is important to keep your loved one at the forefront of their care and listen to them. If they are very uncomfortable, still agitated, and no longer want to be out in the community, quickly finish the necessary tasks and bring them back home. Be flexible and adapt when necessary. Ask them what they would like to do instead once they arrive home.
What are some ways that you ensure your loved one is comfortable in public settings? Share with us in the comments below.
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