In This Issue
The Importance of Personal History
Bright Young Mind Works Towards Cure
Please Don’t Forget Me: A Book That Resonates
Distinguished Member Awards
Caregiving Tips
Upcoming Education
Upcoming Events
Celebrating Our Accomplishments
2013-14 Annual Report
Don’t miss reading about our past year of accomplishments in the Alzheimer Society of Manitoba’s 2013-14 Annual Report. This publication was unveiled at the Annual General Meeting on June 25, 2014. Annual Report 2013-14.
The Importance of Personal History
How much do people really know about the history of their family members?
Most of us have a handle on the basics, such as where our mothers grew up and what our grandfathers did for a living. But in reality, many small details – and even significant events that changed the life of a family member – may not be known to us. In the course of a relationship, these occurrences may eventually be talked about, but if someone becomes affected by dementia, it may be difficult for important parts of the person’s history to come to light.
It is these “unknowns” about someone’s past that often become the cause of distress for a caregiver. “Sometimes, a person with dementia may say things or act in ways that are out of character,” explains Maria Mathews, Manager of Family Education at the Alzheimer Society of Manitoba. “But if we are able to look a little deeper into the person’s history, we may find the answer – or at least an explanation.”
Maria, who facilitates caregiver education for the Society, recalls the story of a woman with Alzheimer’s disease who often cried when she saw an infant. The woman’s step daughter, the main caregiver, was unable to calm her step mother or explain the behaviour. Finally, she discovered – quite by accident through a relative – that, decades ago, her step mother had given birth to a stillborn child.
“For this woman, memories that had receded were now coming out in dementia,” says Maria. “However, the step daughter, who was relatively new to the family, had no idea that she had suffered such a tragedy earlier in her life.”
This knowledge helped the step daughter to understand the significance of the behaviour she was witnessing and, with help from the Alzheimer Society, she learned new approaches to caregiving, such as redirecting her step mother to help lessen her distress.
You are Who You were When
In her Experiencing Dementia group sessions, Maria encourages family caregivers to participate in an exercise called “You are Who You were When.” Group members are asked to consider what they know about past occurrences in the life of the person they are caring for. How did these experiences impact the person’s life? How can this information assist a caregiver in understanding reactions to people, places or things? Considering the person’s history can give the caregiver insight into the person’s behaviour.
Maria suggests another way for caregivers to learn about a person’s history: whenever possible, talk to relatives and friends of the individual to better understand the background and, in turn, the behaviour they see. For example, staff members at a care facility were puzzled when one of the residents slept for most of the day, but became alert and animated at night, at which time he would go from room to room turning lights on and off. After talking to a relative, staff realized that the behaviour made perfect sense – the man had spent his career as a night maintenance man at a hospital.
This man’s story reveals how important it is for family members and friends of a person with dementia to share their knowledge about the individual, especially when the caregiver role is passed on to others, such as personal care home staff. Providing details about events in the person’s life gives the new caregivers the information they need to provide empathetic and compassionate care for the person with dementia.
Bright Young Mind Works Towards Cure
Even while studying something as microscopic as mitochondria, graduate student Chris Cadonic likes to think big picture.
Chris is a master’s student in Biomedical Engineering at the University of Manitoba, and he is a recipient of a Graduate Student Fellowship from the Alzheimer Society of Manitoba. He also happens to be a student in researcher Dr. Benedict Albensi’s lab, where he is working towards creating a predictive mathematical model to help combat Alzheimer’s disease.
With a background in psychology, Chris has embraced a multidisciplinary approach to academics and research. “I’m a fan of outside the box, bigger picture thinking and considering as many angles as possible,” he explains. Finding Dr. Albensi’s lab gave him the perfect opportunity to bring his research to a molecular level.
For him, the transition to Alzheimer’s research made the most sense: “I’ve always been interested in studying memory function and dysfunction.” When he started to look at the molecular data surrounding the disease, he noticed that many studies point out mitochondrial deficits as being quite prominent in both normal aging and in many age-related neurodegenerative disorders.
This led him to his current project. He aims to develop a descriptive and predictive model of mitochondrial functioning in healthy and transgenic mice. This would allow for a more comprehensive understanding of the function of mitochondria under various alterations.
This approach is novel because not a lot people have looked at the mitochondrial deficit in this way. There is room to develop a more robust model to help gain a thorough understanding of why this deficiency occurs.
Chris’s research is exciting because of the potential efficiencies it will create for future research. “A predictive model is useful for forming new ideas. It gives a visualization of what may happen and lets you see if your original idea is worth pursuing or not,” he explains. It will allow for researchers to use his model to conduct a simulation before conducting expensive, time-consuming experiments.
If successful, his work could lead to treatment options down the line, and a possible cure.
Chris’s easy going nature comes through in the way he speaks about his work and colleagues. With bright young minds such as his working towards a cure, there is good reason to be optimistic about the future of dementia research in Manitoba.
Please Don’t Forget Me: A Book That Resonates
For the past couple of years, Tom Pearson had a secret. Only his closest confidants knew the truth. When he finally decided to reveal the mystery, his friends almost didn’t believe him: Tom had written a book.
Tom spent 13 years caring for his wife Lynne, who was diagnosed with early onset Alzheimer’s at age 50. He received support from the Alzheimer Society during this time by attending a caregiver support group. After Lynne passed away in 2011, he was encouraged by people close to him to share their story.
So he wrote.
At first, he did it just to see if he could, but soon he knew he was onto something greater. The publishers at Pegasus Books agreed.
“Getting someone to publish it was like winning the lottery,” beamed Tom. What’s even more impressive is that he got the publication deal on his first try. It’s a testament to how much Tom and Lynne’s story resonates with people.
In May, Tom celebrated the launch of the book at McNally Robinson. The event was a complete success. Not only did they sell out of all the copies in the store, but Tom made a donation of $360 to the Alzheimer Society of Manitoba with funds raised at the launch.
He doesn’t plan on stopping there, either. He is donating half of the proceeds of the sales to the Alzheimer Society. The other half is being used to market the book, which he hopes will bring even more donations and awareness. Like so many others affected by dementia, Tom is carrying on his advocacy long after his time as a caregiver.
Stories like Tom and Lynne’s are important for helping others through their dementia journey. As Tom puts it, “until you’ve experienced it, it’s hard to really know what it’s like to be affected by Alzheimer’s. It’s all encompassing. You’re in for the long haul.”
The truth and reality are part of what makes it such a special story. Complete strangers have written to Tom telling him how they loved the book and how they cried through the whole thing. All of the feedback has been supportive. Though it was a long journey, it was a worthwhile one.
If you want to discover the story for yourself, “Please Don’t Forget Me” by Tom Pearson can be found at McNally Robinson and online at various retailers.
Distinguished Member Awards:
Honouring Our Volunteers
Every day, volunteers dedicate time and energy to the Alzheimer Society of Manitoba. They do it for many reasons. Maybe they reached out for help from the Society when a family member faced the challenges of dementia and they wanted to give back. Perhaps they see a need in the community for expanded services. Or maybe they simply have generous spirits and want to help make the world a better place.
Here are two individuals who continue to leave their marks on the Alzheimer Society of Manitoba through volunteerism. To acknowledge their contributions, they are being honoured with the Distinguished Member Award.
Marilyn Davis
Marilyn Davis has proven herself to be a long-standing, kind, reliable and hardworking volunteer who has dedicated her energy to the Alzheimer Society for many years. She became interested in volunteering after she received assistance from the Society’s Caregiver Support Group at the Tuxedo Villa in the early 1990s when her mother had dementia. “I knew what it was like and I wanted to help,” she says of her decision to become a co-facilitator for the Tuxedo group, a position she has held for over 10 years.
Marilyn has assisted in many other ways over the years. She has volunteered at fundraising activities, such as Memory Walk and the Door to Door campaign, assisted at the Care4u family conference, and has been a media spokesperson for the Society on several occasions. She has already been honoured with a 15 year volunteer recognition pin and will receive her 20 year pin in 2015.
In more recent years, Marilyn found herself reaching out for help from the Alzheimer Society again when her husband was diagnosed with dementia. “I want to continue helping to raise awareness so that people who are struggling know they can turn to the Alzheimer Society for help,” she says.
It is with pleasure that the Alzheimer Society presents Marilyn with the Distinguished Member Award for 2013-14.
Pearl Soltys
Pearl Soltys is a devoted volunteer whose relationship with the Alzheimer Society goes back over 20 years. Her early work involved assisting in several different capacities, including participating on the advocacy committee, leading workshops for caregivers and meeting Alzheimer Society supporters while working on the Door to Door campaign. She also helped to produce, as well as present at, the Dementia Care conference for health care professionals.
Through this initial association with the Society, Pearl recognized the exceptional qualifications and dedication of the Society’s staff. “It was clear to me that the Alzheimer Society was an efficiently and compassionately run organization and that my volunteer efforts could be extended to benefit people with dementia in Manitoba,” she explained. This realization led Pearl to take a leadership role by becoming a volunteer board member in 2005.
In the years since then, she has served as President, Vice President and Past President of the board. She also spent four years as the Manitoba representative on the board of the Alzheimer Society of Canada. During that time, she developed an even stronger confidence in the Alzheimer Society of Manitoba, believing that “it is doing all that it can and more!”
Already a 20 year volunteer recognition pin recipient, it is a great honour for the Society to present Pearl with the Distinguished Member Award for 2013-14.
Caregiving Tips
Summer Fun and Safety
Longer, warmer and sunnier days are ahead. Take time to bask in the sun and enjoy outdoor activities! Summer gives people with dementia more opportunities to be physically active and attuned with nature and the environment. With planning and creativity, you can enjoy summer activities and remain safe. Here are some suggestions:
- When having a backyard barbeque or bonfire, have all materials ready ahead of time. As the person with dementia may not remember the proper use of the grill or fire pit, being with them to ensure safety allows for an enjoyable time in the backyard.
- Bicycling is a fun filled exercise. If the person enjoys bicycling, ride along a quiet trail with minimal traffic and distraction. Encourage the use of a helmet. Wearing one yourself could be a prompt for the person.
- A walk in a park or garden is relaxing and visually stimulating. Suggest cool, loose-fitting clothes and comfortable shoes. A person with dementia may not realize that they are thirsty; having a bottle of water handy and reminding the person to drink regularly may prevent dehydration.
- Going to a ballgame may be something the person you care for has always enjoyed. Large crowds could be overwhelming. Observe how the person is reacting to the crowd and redirect or leave as needed. You may opt for smaller events such as recreational games in your community field.
- A picnic or going to the lake stimulates reminiscing. Select a familiar place for a picnic. Bring the person’s favourite food. Plan activities that the person is fond of, such as fishing, playing with the dog or reading a book.
- As you enjoy the sunshine, remember to use sunscreen. You may have to remind the person to reapply it when outside for longer periods of time.
Summer can create a warm feeling of engagement for a person with dementia. It is a great time for both of you to have fun!
Upcoming Education
Experiencing Dementia
An eight-week program uniting families and community members with individuals who are experiencing the early stages of dementia.
Thursdays, October 9 to November 27, 10:00 am to 11:30 am
For more information, contact Cheryl Demasi, Client Services Coordinator, at 204-943-6622, ext. 229 or cdemasi@alzheimer.mb.ca
Act On It! Ideas for Keeping a Healthy Brain
It’s never too soon or too late to make changes to improve or maintain your brain health!
Wednesday, October 8, 1:30 pm to 2:30 pm
Corydon Community Centre
River Heights, 1370 Grosvenor Ave., Winnipeg, MB (Map)
Click here for poster
Care4u: A Conference for Family and Friends
Caring for a Person with Dementia
Saturday, November 1, 9 am to 3:30 pm
Canadian Mennonite University, 500 Shaftesbury Blvd., Winnipeg, MB (Map)
Click here for more information
Click here to register
Upcoming Events
BBQ in the Park
Join Gen Lambert and friends to raise money for the Alzheimer Society.
Saturday, August 9, 2014, 11 am to 1 pm
St. Vital Park, Winnipeg, MB
Picnic Space #1 (behind the sports fields as you exit the park)
Click here for more information and to donate.
Brandon Motorcycle Poker Derby
Rev your engines and support the Alzheimer Society. Join us for the 19th Annual Motorcycle Poker Derby!
Saturday, August 16, 9 am to 7 pm, Brandon, MB
Click here for more information Click here to register online, or contact mloewen@alzheimer.mb.ca
Coffee Break®
Hosting a Coffee Break® event during September and October is an easy and fun way to show your support for people affected by Alzheimer’s disease or another dementia in your community. Participants at these events make a donation in exchange for a cup of coffee. Click here for more information.