June 2016 eNewsletter

In This Issue

Our Walk has a New Name!
You are Invited to our Annual General Meeting
Remember Your Family Member at our Tree of Memories Ceremony
Maintaining Brain Health: A Few Tricks
Graduate Student Fellowships Awarded
Tell Your Dad How Much You Appreciate Him!
Four Dementia Research Studies Need Participants: Find Out How You Can Help
Spotlight on Current Research: Changes in Social Relationships Could be an Early Sign of Cognitive Decline
Caregiver Tips: Pain and Dementia (Part 1): Recognizing Pain in a Person with Dementia
Upcoming Education
Upcoming Support Groups
Upcoming Events

Join the Nation-wide Movement to Make Memories Matter!

This year’s Walk has gone national, and we have a new name and logo. Previously called “Memory Walk,” the event is now “Walk for Alzheimer’s.” Alzheimer Societies across the country have joined forces under this new brand, making the event Canada’s biggest fundraiser for dementia. It’s a fun and family-friendly way to create new memories while sending a message of hope to the 474,000 Canadians currently living with dementia and the thousands more who care for them.

By participating in a Walk in Manitoba, you will be joining thousands of Canadians who want to see a world without dementia. By walking, you honour the memories of those who are no longer with us – such as mothers, fathers, grandparents, sisters, brothers and friends – and support work right here in Manitoba to help people with dementia live well today.

You can join the Walk for Alzheimer’s in Winnipeg on Tuesday, June 14th at 5 pm at The Forks – Festival Stage, or you can participate in one of the many Walks taking place throughout Manitoba during June.

All funds raised go towards the programs and services offered by the Alzheimer Society of Manitoba, along with the continued search for a cure.

Click here to register.
Click here for a calendar showing the location and dates of Walks in Manitoba.

See you there!

You Are Invited

Please join us as we celebrate a year of accomplishments, recognize our dedicated volunteers
and honour those who have lost their lives to dementia.

Wednesday, June 22
Alzheimer Society – Provincial Office 
10-120 Donald Street, Winnipeg, MB

AGENDA
5:30 pm – Reception
6  pm – Volunteer Recognition & Tree of Memories Ceremony
7  pm – Annual General Meeting

RSVP to Trudy Mattey by Friday, June 17 at tmattey@alzheimer.mb.ca
or 204-943-6622 ext 214.

Tree of Memories Ceremony

Honour the memory of your loved one by adding a commemorative leaf to our Tree of Memories at the Annual General Meeting on Wednesday, June 22.

For a gift of $250 to the Alzheimer Society of Manitoba, you will receive a personalized leaf with the name of your loved one. If you wish, you will have the opportunity to say a few words as you personally place your leaf on the Tree, which is located at our Winnipeg office at 10-120 Donald Street.

To purchase a leaf or to participate in this ceremony, contact Lynne Williams by Friday, June 17 at lwilliams@alzheimer.mb.ca or 204-943-6622 ext 211.

Maintaining Brain Health:
A Few Tricks to Slow the Progression

Tanis Rummery has a little trick she uses to start conversations with people she meets on the street. She carries dog biscuits in her purse; when she sees a dog walker, she pulls out a biscuit and asks the owner if she can make friends with the dog by offering a snack.

Tanis has a good reason for doing this. She has vascular dementia, and she wants to keep her mind active by conversing with others. Nine times out of ten, dog owners are happy to oblige as they chat with Tanis about their pets. “I’m an animal lover and a nature lover – the minutes end up passing by quickly,” she says.

Taking action to maintain her brain health is a wise thing for Tanis to do. Research shows that, while dementia is irreversible, its progress can be slowed. People can take steps to reduce the impact of the risk factors and thereby stay healthier longer. That means eating well, getting enough exercise and stimulating the brain through activities such a socialization.

“I talk to anybody, anytime, and they can engage with me if they want to,” says Tanis. “I talk to people at the supermarket and at the Humane Society where I go to cuddle the kittens.” She also volunteers as a regular visitor to a senior citizen through a home visiting program. Tanis knows that this interaction is, for her, a necessity and not a luxury.

Another way to keep the brain active is by participating in mentally challenging activities. Luc Lemoine can attest to that.

Luc has Pick’s disease, a form of frontotemporal dementia that affects the frontal lobe and/or the temporal parts of the brain. He lives in his own apartment in an assisted living facility, while his wife, Diane, lives in their family home.

“I watch movies on Netflix and I also read about four books a week,” says Luc, who is bilingual in French and English. He makes an interesting observation: “I notice that I use my mind better when I read rather than when I passively watch TV. I can’t remember any of the movies that I watch, but I retain a lot of the information in the books I’ve read.” He claims that reading helps him to keep up on his vocabulary.

Luc regularly visits Diane at the couple’s home, staying active by doing the yard work and gardening. He has managed to continue with his stained glass hobby in his home workshop, making creations to give to his grandchildren. He still cooks a mean jambalaya – he was the “chief cook and bottle washer” when he lived at home, and he wants to maintain his cooking skills.

Support Group a Lifeline

Both Tanis and Luc attend support groups at the Alzheimer Society of Manitoba. The group provides the opportunity for people with dementia to meet and share their experiences, helping to fend off loneliness and isolation that may occur when the symptoms of the disease make it difficult to stay in touch with friends and family.

Tanis finds the group to be a lifeline – everyone is warm and caring and she can express her feelings openly. Luc likes being able to discuss things with others who are in a similar situation and to find solutions.

Maintaining brain health is an individual, but very important, goal. Whether it be dog biscuits or stained glass or any number of other ideas for activities and interaction, taking action to stay engaged will help people with dementia, such as Tanis and Luc, to live better lives longer.

Graduate Student Fellowships Awarded

The Alzheimer Society of Manitoba is proud to announce the recipients of the 2016-17 Graduate Student Fellowship Research Program. The purpose of these awards is to enhance knowledge about the cause, treatment, cure and effects of Alzheimer’s disease and other dementias in the biomedical and psychosocial domain by encouraging and stimulating graduate student research activity in these areas.

One of the recipients is Audrey Katako, a Masters student in the Department of Health Sciences/Medicine/Human Anatomy and Cell Science at the University of Manitoba. Audrey is interested in finding ways to diagnose Alzheimer’s disease in the early stages so that those affected will have a better chance to preserve cognitive functioning for longer. Her study is called A Novel Quantitative Approach to Positron Emission Tomography for the Diagnosis of Prodromal Alzheimer’s Disease.

Cassandra Natividad Aldaba is the second recipient. She is a Master’s student in the Department of Biomedical Engineering at the University of Manitoba. She will use a virtual reality cognitive training program with people with dementia to investigate its benefits in maintaining or improving an individual’s cognitive abilities. Her study is called Augmented Immersive Virtual Reality Cognitive Training for Individuals with Dementia.

Congratulations to Audrey and Cassandra for their accomplishments! Watch for the July and August issues of this eNewsletter for more detailed descriptions of the work of these graduate students.

This Father’s Day…
Tell Your Dad How Much You Appreciate Him!

In honour of Father’s Day, we’d like to present you with this powerful video in which ten fathers and their children express their appreciation for and pride in each other. We promise it will bring a tear of sentimentality to your eye!

You can help us support all dads who are struggling with dementia and their families by clicking here to make a Father’s Day donation to the Alzheimer Society. Thank you!

Four Dementia Research Studies Need Participants:
Be Part of the Solution by Getting Involved!

Research is vital to finding better ways to prevent, diagnose and treat dementia and improve the quality of life of those affected by it. Often, researchers need participants for studies or individuals willing to fill out surveys. Without these volunteers, research would not be possible.

Here are four studies that currently need participants. Take a look to see if you’d like to take part!

HAVE YOUR SAY: HELP SET DEMENTIA RESEARCH PRIORITIES IN CANADA

Do you have a personal or professional connection to dementia? Do you want to help shape the future of Canadian dementia research?

A study called the Canadian Dementia Priority Setting Partnership aims to identify priority areas for Canadian dementia researchers and research funding organizations. By participating in this study, you can help researchers address what matters most to Canadians like you who are affected by dementia.

We would like to hear from:

• People with dementia.
• Friends, family and caregivers of people with dementia.
• Health and social care providers (e.g., doctors, nurses, occupational therapists, personal support workers, pharmacists, social workers, etc.) who work with people with dementia and/or can advocate for them.
• People with no direct experience of dementia, but who are interested in the issue.
• Alzheimer Society board members, volunteers and staff across Canada.

Here’s how to participate:

Complete the questionnaire and submit the questions that you would like to see answered through research. The questionnaire is available online here or you can download a paper format here, complete it according to the instructions and mail it to the address provided.

The study is being funded by the Alzheimer Society of Canada and is being led by Dr. Katherine McGilton, Senior Scientist, Toronto Rehabilitation Institute – University Health Network.

FINDING WAYS TO HELP THOSE WITH YOUNG ONSET DEMENTIA

The Alzheimer Society is asking for your help: we want to identify existing and new resources that are needed to provide information and support for people with young onset dementia. The purpose is to better meet the needs of these individuals at the time of the young onset diagnosis and throughout the course of the disease.

An individual with young onset dementia is someone who has received a diagnosis of Alzheimer’s disease or other dementia before the age of 65 years. We are asking for advice and feedback from those with lived experience of young onset dementia, their caregivers and health care professionals.

To this end, three surveys have been developed (links are below). You can choose the one that is appropriate for you.

• Survey for people with young onset dementia
• Survey for care partners
• Survey for health care providers and staff

DO YOU WORK AND HELP CARE FOR A RELATIVE WITH DEMENTIA?
PLEASE CONSIDER PARTICIPATING IN THIS STUDY!

This study is seeking participants from Portage La Prairie, Steinbach, Winkler and surrounding rural areas.

We would like to hear your story about your dual role as an employee and caregiver. Your time commitment to this interview is 45-60 minutes.

You may also choose to participate in an eight-week program which includes two-hour group sessions of education, problem solving techniques and information about dementia and community resources. You may also participate in a focus group to share your thoughts about the program. Your time commitment to this focus group is 75-90 minutes.

For further information about the study, click here.

To participate, please contact: Jocelyne Lemoine, Site Coordinator, at 204-474-9476 or Jocelyne.Lemoine@umanitoba.ca

This study is funded by the Canadian Institutes of Health Research (CIHR) and is part of the Canadian Consortium on Neurodegeneration in Aging. It has been reviewed and cleared by Mount Sinai Hospital Research Ethics Board, University of Manitoba Education/Nursing Research Ethics Board and Southern Health Research Ethics Board. If you have any concerns or complaints please contact the Human Ethics Coordinator at humanethics@umanitoba.ca

HAVE YOU LOST YOUR SPOUSE TO DEMENTIA?
THIS STUDY STRIVES TO FIND A WAY TO HELP

Dealing with grief that comes from the loss of a spouse can be very difficult, especially for those who cared for a partner who died with dementia. Spousal caregivers clearly require support to facilitate their adjustment from being a dementia caregiver to living a positive life without their spouse. Unfortunately, few resources and interventions are available to help bereaved spousal caregivers of persons with dementia. In order to meet the unique needs of bereaved spousal caregivers, we are looking for volunteers in Manitoba to take part in a study. The study will test a self-administered writing tool for bereavement after caring for a spouse with dementia.

We are looking for individuals who:

• are 60 years of age or older.
• had a spouse die three months ago or longer.
• had a spouse die with advanced dementia.
• are able to read/write/understand English.

As a participant in this study, you would be asked to participate in three interviews, each of which will last approximately 60 minutes. You will also be asked to use and provide feedback about the bereavement tool.

In appreciation for your time, you will receive a gift card.

If you would like to participate in this research project or have questions, please do not hesitate to call Research Coordinator, Paula Black, at 204-787-4932 or email: paula.black@umanitoba.ca

This research has been approved by the University of Manitoba Health Research Ethics Board.

Spotlight on Current Research

Changes in Social Relationships Could be an Early Sign of Cognitive Decline

According to the results of a study published in the Journal of General Internal Medicine, small changes in the social functioning of older people could be early indications of cognitive decline.

The study included 3,310 community-dwelling adults aged 62 to 90 who were part of the National Social Life, Health and Aging Project. The participants underwent cognitive screening and were categorized into three groups: normal, mild cognitive impairment (MCI) and dementia. Each group’s social relationships were analyzed using four domains: network structure (measure of how big their social network is and the degree of engagement the person had with these networks), support they received from others, the strain relationships place on them, and their engagement in community activities.

Results showed that individuals categorized with MCI and dementia had smaller networks that are more interconnected and comprised mostly of relatives. Researchers think this could reflect how families begin to assist more when their relative has cognitive changes.

Men with dementia perceived that their spouses were more encouraging than before they had dementia. Women thought they received less support, particularly from friends. Study authors note that even a small change in cognition in women may alter their ability to reach out for assistance.

Socialization, as opposed to support, with both friends and neighbours was generally the same in women experiencing any kind of cognitive decline. Men with lower cognitive status socialized more with friends and neighbours. In both men and women with lower cognition, community involvement was found to be lower.

The associations observed in the study indicate that decrease or disruption in social function may signal cognitive decline. Families and friends can flag the changes in social function and encourage the person to seek assessment. On the other hand, knowing that changes in cognition can impact a person’s social function, community and family networks must continue to offer, assist and help maintain the person’s social engagement to prevent isolation and further cognitive decline.

Pain and Dementia (Part 1):
Recognizing Pain in a Person with Dementia

Pain is a common concern among older adults, including those with dementia. A change in a person’s cognitive and communication abilities may make it difficult to recognize and treat pain. Symptoms can go undetected or they may not be treated adequately. If this occurs, pain may significantly impact the person’s physical capabilities and behaviour.

To assist a person with dementia with pain management, caregivers need to be aware of the reasons why a person with dementia may not mention their pain. As well, caregivers need to recognize the signs of pain.

Common Reasons Why Someone with Dementia May Not Report Pain
The person may:

• believe that pain is a natural part of getting old.
• think that pain is part of dementia.
• fear the consequences of reporting pain, such as feeling they are a burden to their family, being seen as incapacitated or being judged as seeking attention.
• forget about the pain that occurred.
• be unable to find words to express or describe pain.
• have misconceptions about potential side effects of pain medications, such as medications leading to addiction and having negative effects on cognition.

Signs of Pain
Signs of pain may include changes in:

• facial expressions – frown, grimace, wrinkled forehead, closed or wide open eyes.
• verbalizations/vocalizations – sigh, moan, groan, grunt, calling out, noisy breathing, verbal outburst.
• body movements – rigidity, guarding, fidgeting, rocking, pacing, increased falls.
• behaviours – physical outbursts, refusal to receive assistance, withdrawn, irritable, crying out.
• activity permitted around painful areas.
• sleep patterns.
• bowel movements.

If you think that pain is affecting the person you are caring for, encourage the person to inform their doctor about what they are experiencing. If the person is unable to do so, report the signs to the person’s doctor on their behalf. Your assistance in monitoring and carrying out the prescribed pain management regime will contribute to its success.

Watch for Part 2: Strategies to Support a Person Experiencing Pain in the July e-news.

Upcoming Education

FAMILY EDUCATION

Family Education: Next Steps
Learn new skills that will help you face the daily realities of living with and caring for a person
with Alzheimer’s disease or another dementia through these informative sessions.

Understanding Psychoses and Anxiety in Dementia
Behavioural and psychological symptoms of dementia may include hallucinations, delusions, psychosis and anxiety. Gain an understanding of how these changes may manifest in a person with dementia and be informed of strategies in our approaches to these changes.
Thursday, June 16, 7 to 8:30 pm
Gwen Secter Creative Living Centre, 1588 Main St., Winnipeg (map)
Click here for more information and to register.

Minds in Motion® Program
Stay tuned for information on fall sessions of the eight-week Minds in Motion® program, which will take place at six Winnipeg locations and in Gimli. This popular program combines physical activity, socialization and mental stimulation for people living with early to mid-stage Alzheimer’s disease, or other dementias, to enjoy with a family member or community care partner.
Click here for information about this program.

Virtual Dementia Tour
Join us to participate in a Virtual Dementia Tour, a hands-on activity that attempts to simulate a few of the physical and cognitive changes in people with dementia.

Grandview
Friday, June 17, 1 to 3 pm
Grandview Personal Care Home, 64 Mill St. (map)
Please wear closed-toe shoes.
To register, contact Wanda Sime at 204-638-4483 or alzprk@alzheimer.mb.ca

Living with Alzheimer’s Disease or Other Dementias (Workshop)
This one-day workshop provides valuable information for those who are caring for
a person with dementia.

Russell
Saturday, June 18, 9 am to 4 pm
Russell Health Centre, 426 Alexandria Ave. S. (map)
Cost: $20. Includes resources and lunch.
Click here for more information.
To register, contact Julie Hockley at wmprog@alzheimer.mb.ca or 204-729-8320.

Save the Date!
Care4u® is a conference for family and friends caring for a person with dementia.
Saturday, October 29, 9 am to 3:30 pm
Canadian Mennonite University, 500 Shaftesbury Blvd., Winnipeg (Map)
Online registration coming soon!

Many thanks to our Care4u Event Sponsor, All Seniors Care.

Upcoming Support Groups

Check with your group facilitator or the regional office nearest you to learn more about the date and time of the next group meeting. The Alzheimer Society’s family support staff are here to help – contact us at alzmb@alzheimer.mb.ca, 204-943-6622 (in Winnipeg) or 1-800-378-6699 (in Manitoba).

Click here for information on Support Groups for People with Dementia

Click here for information on Support Groups for Family and Friends

Stay Tuned for Information on Fall Programs!

Keep an eye out for our July and August eNewsletters for listings of upcoming programs, such as Minds in Motion®, Living With Alzheimer’s or other Dementias, Telehealth, the eight-week Experiencing Dementia program, as well as information on support groups, educational sessions and more!

Upcoming Events

Walk for Alzheimer’s is Canada’s biggest fundraiser for Alzheimer’s disease and other dementias. By walking in Winnipeg on Tuesday, June 14 or at one of the many Walks taking place all over Manitoba during June, you will support work right here in Manitoba to help people with dementia to live well.
Click here to register.
Click here for a calendar showing the location and dates of Walks in Manitoba.

Get Your Motors Running!
Join motorcycle enthusiasts and Alzheimer Society of Manitoba supporters at the 21st Annual Motorcycle Poker Derby in Brandon, Manitoba, on Saturday, August 20, 2016. The events starts at 9 am with a hearty pancake breakfast at the Alzheimer Society office at 457 9th Street in Brandon (map).

Click here for more information. Click here to register online, or contact Larissa Lockerby at alzwm@alzheimer.mb.ca
 or by calling 204-729-8320.

Winnipeg 10 & 10: Run or Walk in Support of the Alzheimer Society!
Run or walk 30 km, 10 mile, 10 km or 5 km events that start and finish in downtown Winnipeg during Manyfest on Sunday, September 11, 2016 at 7:30 am. The Running Room is partnering with the Alzheimer Society for this event.
Click here to register.
For more information, contact Chris Walton at cwalton@runningroom.com

Have you thought about how you will host your Coffee Break® event this fall?
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. There are all sorts of ways to host a Coffee Break® event: you can invite neighbours to your home for morning coffee, your office can host an event in a common area, or your organization can invite friends and clients to your facility for coffee and treats. Participants at these events make a donation to the Alzheimer Society of Manitoba in exchange for a cup of coffee. Watch for our July and August eNewsletters for more information.