In This Issue
Celebrating Our Accomplishments!
Visiting Isn’t Always Easy
Graduate Student Fellowships Awarded
Congratulations to Our Volunteer Award Winners!
Be Part of the Solution: Get Involved as a Research Participant
Spotlight on Current Research: Loneliness and Other Symptoms of Depression Linked to Cognitive Decline
Caregiver Tips: Pain and Dementia (Part 2) – Strategies to Support a Person Experiencing Pain
Upcoming Support Groups
For Alzheimer Society of Manitoba CEO Wendy Schettler, visiting her father brings with it a mixed bag of emotions. Those emotions can be happy or sad, but all of them are unpredictable. Wendy says that one of the more surprising things about visiting her father, who has Lewy Body Dementia, is that sometimes good visits can bring sadness.
“You don’t always get to choose how you feel,” she says.
“Sometimes I’ll go for a visit and I’ll crouch down in front of him and place my hands on his cheeks and say, ‘Hi, Dad,’ and he’ll give me a big smile. He doesn’t remember who I am, but he knows I’m someone who loves him. Sometimes he’ll get a cheeky look in his eye and say a funny phrase that he used to say – often it makes me happy to see him shine through, but sometimes it makes me sad, it makes me miss the Dad he was.”
The reality of seeing one brief moment of lucidity only to have it sandwiched by the effects of the disease are, in a word, heartbreaking. But Wendy believes that those small moments of connection can be profoundly comforting – they are one of the reasons she continues to visit.
Schedules and Buddy Systems
Wendy explains that everyone is different and each situation brings its own unique set of challenges. One way her family gets around some of the challenges is by scheduling their visits. A member of her, admittedly large, family visits her father every day. She adds that this approach won’t be practical for some families, and that’s okay. What works for her family may not work for others, but building a schedule can be a valuable way to iron out the uncertainty.
Anxiety can occur before a visit, especially if the previous ones were difficult. To reduce anxious feelings, Wendy suggests bringing someone with you to the care setting; having your own support system plays an important part in getting through the tough times.
“Sometimes, I’ll get back to my car after a visit and just cry. I’ve learned that I need to allow myself to feel what I’m going to feel, and then I can move on,” says Wendy, who believes that it’s important to take the good moments from a visit and hold on to them.
“I try to focus on the positives of a visit. Sometimes it’s hard not to be overwhelmed by the changes in the person that you care about. But then my dad smiles at me or sings with me and I’m grateful that I can be there with him.”
Masters Student Uses Virtual Reality
in Unique Study
Virtual reality may not be real, but Cassandra Natividad Aldaba hopes it will provide benefits to people with dementia that are transferrable to their actual worlds.
Cassandra is a Masters student in the Department of Biomedical Engineering at the University of Manitoba. She is one of two recipients of the 2016-17 Alzheimer Society of Manitoba’s Graduate Student Fellowship award, which provides $4,000 per student each year to assist with research that focusses on dementia.
Cassandra’s unique research involves using a virtual reality cognitive training program for people with dementia to investigate its benefits in maintaining or improving cognitive abilities. Her study, a pilot, is called Augmented Immersive Virtual Reality Cognitive Training for Individuals with Dementia.
Window to the Virtual World
Participants in the study wear a head mounted display through which they view a virtual world that was created by Cassandra. Using a wheelchair that acts as a joystick, they can move in the real environment in synchrony with the virtual environment.
“What the participants can see is one of two different virtual shopping areas – a farmer’s market or a district with stores,” she explains. “The shopping district is located at an intersection that has moving cars. Participants can choose to go to such stores as a florist shop, a bakery or a diner.”
Cassandra chose to develop this particular virtual world because dementia affects people’s ability to do everyday things, such as pay bills, take medications…and go shopping.
Those involved in the study (five or more volunteers age 60 or over with early or moderate-symptoms of dementia) will visit Cassandra’s lab three times per week for one-hour sessions for a total of eight weeks. In each session, they will be trained to go on a shopping outing in the virtual world. After training, they will try the outing independently and their performance will be measured.
“Participants will be asked to visit three stores and obtain one item from each store – such as potting soil from the florist or a cake from the bakery,” says Cassandra. “In each new session, the stores will appear in a different location and they’ll be asked to get different items so they will be continuously challenged.”
An Immersive Experience
The head mounted display and the wheelchair joystick, along with the actions of research assistants, interact to give this study its unique angle: object interaction. The participants see the virtual environment through the display and they interact with it using the joystick. Then, a research assistant will place the actual item the participant is reaching for in the virtual world – a carton of milk, for example – into their hands. This immersive experience makes participants feel like they are inside the virtual environment.
“These interactions ensure that participants can complete the exercises without having any computer game experience, something that may have caused difficulty for participants with dementia in other studies,” says Cassandra.
By participating in the study, both the spatial memory (where is that store?) and working memory (what’s on that list?) will be challenged.
Cassandra will use several cognitive assessments at certain times during the study to analyze the effects of this cognitive training. The hope is, of course, that the participants will show improvement, or at least maintenance, of their cognitive abilities.
It is hoped that this virtual reality study could, in the real world, translate into lengthening the time that a person has the ability to be independent in everyday tasks.
Congratulations to Our Volunteer Award Winners!
Carol began with the Society as an office volunteer in 2007. She has since expanded her role in several capacities: she facilitates support groups, assists with virtual dementia tours and represents the Alzheimer Society at health fair display booths. Carol has also worked on such projects as the MedicAlert® Safely Home® database clean-up, which includes contacting clients to give them up-to-date information about changes to the program.
“I am both honored and humbled as I marvel at the calibre and dedication of the countless others who could share this award,” Carol says. “To me, this award is also a tribute to my role model and mother, Juliette, who is 95 years old and is living with dementia.”
A professional, enthusiastic and dependable volunteer, Carol provides pivotal support for the Society. She always makes the extra effort to learn and understand the ins and outs of the program for which she is volunteering. In recognition of her tireless efforts, Carol is this year’s recipient of the Distinguished Member Award.
Tannis’s mother, Norma, was diagnosed with Alzheimer’s disease nine years ago. The family reached out to the Society for support, and through this connection, Tannis became involved as a volunteer. Since 2008, she has enthusiastically participated in Memory Walk with Team Aloha. Her team was named after her mother’s favourite memory – a trip to Hawaii. Tannis has personally raised more than $6,000 and her team has raised over $12,000.
“I am very honoured to have received this award,” says Tannis. “I want to do all I can to help make a difference. Alzheimer’s is a challenging disease and I hope that my contributions will help assist in finding a cure.”
When planning their 2015 wedding, Tannis and her husband found another way to give: they decided to participate in the Society’s Anything for Alzheimer’s to create awareness among their guests and to raise money. Norma was able to attend. “Mom’s presence meant a lot to me, even though she may not have understood what was going on,” Tannis says.
The Alzheimer Society recognizes Tannis’s commitment and is pleased to bestow her with the Outstanding Volunteer Fundraiser Award for 2015-16.
Be Part of the Solution: Get Involved as a Research Participant!
Research is vital to finding better ways to prevent, diagnose and treat dementia and improve the quality of life of those affected by it and their caregivers. Often, researchers need participants for studies or individuals willing to fill out surveys.
Here are four studies that currently need participants. Take a look to see if you’d like to take part!
RESEARCH SURVEY FOR CAREGIVERS WHO ASSIST WITH MEDICATIONS
Are you an unpaid caregiver for a person with dementia living in the community? Do you currently assist this person with managing their medications?
If so, you are invited to participate in a research study called Medication Management by Informal Caregivers for Community-Dwelling Persons with Dementia. Participation will take about 10 minutes and your answers will be anonymous. The results of this survey will help researchers gain insight into some of the issues faced by caregivers of people with dementia who live in the community with regards to assisting and managing medications for their care recipient.
The survey can be found at: fluidsurveys.com/s/medsurvey/
For more information about this study, please contact Principal Investigator Dr. I fan Kuo, Assistant Professor, College of Pharmacy, Faculty of Health Sciences, University of Manitoba at 204-318-2576 or at I.Kuo@umanitoba.ca
A researcher from Brandon University is looking for family and paid caregivers who witness this behaviour in the person they care for. The study, called Caring for Reactive Behaviours in Dementia, will examine how caregivers understand and respond to these behaviours with a goal to inform future support services and programming.
Participation involves a one- to two-hour interview to take place at a time and location convenient to you. The person with dementia who you care for must have moved to assisted housing or long-term care within the last two years.
For more information, contact Dr. Rachel Herron, Department of Geography, Brandon University at 204-727-9771 or at email@example.com.
EXAMINING IDEAS FOR INNOVATIVE TECHNOLOGY FOR CAREGIVERS
Are you a family caregiver for an older adult OR are you an older adult who is a caregiver? Would you like to participate in research that will help to identify technological solutions to assist with some of the challenges of caregiving?
Researchers from the University of British Columbia are looking for volunteers to participate in a study examining caregiver burden and caregiver technologies. Your interaction with researchers will be by phone. The study involves answering questions about your caregiving background and your perceptions of caregiver activities and technologies. The Principal Investigator is Dr. Ben Mortenson of the Department of Occupational Science & Occupational Therapy at the University of British Columbia.
For more information, contact Leena Chau at 604-714-4108 or at firstname.lastname@example.org
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.
Loneliness and Other Symptoms of Depression Linked to Cognitive Decline
According to a study conducted by researchers from the Brigham and Women’s Hospital and Harvard Medical School, loneliness and depression may hasten cognitive decline in older adults.
The researchers reviewed data from 8,311 adults age 65 and older who participated in the U.S. Health and Retirement Study from 1998 to 2010. Participants were assessed every two years for depression, loneliness, memory, cognitive function, health status, and sociodemographic and social network characteristics. About 1,400 of the participants (17%) reported loneliness at the start of the study, and roughly half of that group also reported clinically significant depression.
Results show that over the 12-year study, participants who had baseline loneliness were associated with a 20% (approximately) faster rate of cognitive decline independent of sociodemographic factors, social network, health conditions and baseline depression compared to those who did not report loneliness. Higher levels of depression also correlated significantly with more rapid cognitive decline.
The study concludes that loneliness may be a risk factor for accelerated cognitive decline in older individuals. Although loneliness and depression appear closely linked, loneliness may have independent effects on cognitive decline. While further studies are warranted to determine the effects of loneliness on cognitive health, the outcomes validate the importance of maintaining emotional and psychological health.
Social engagement, stress management, consultation with health care providers and being connected to family and community supports are some of the valuable steps in upholding the well-being of older adults.
To read an article about the study, follow this link: www.healthline.com/health-news/study-links-loneliness-with-cognitive-decline-in-older-adults-072015
Pain is a common concern among older adults, including those with dementia. Recognizing the signs of pain is key to identifying pain. (Click here to see Part 1 of this series in our June newsletter to learn about the signs of pain.) Once pain is noted, taking an active role in monitoring and carrying out the prescribed regimen contributes to the success of pain management.
Suggested strategies for supporting a person who is experiencing pain include:
- Assisting the person in keeping a pain journal, which should include time of day, severity and changes associated with pain. Use the information in this journal when communicating with the person’s health care provider.
- Exploring and reporting other factors, such as fear, anxiety or psychosocial distress.
- Assisting the person with the pharmacologic treatment plan by:
– Keeping a record of all medications.
– Informing the health care provider of over-the-counter medications that the person is taking.
– Reminding the person when to take the medications (if the person forgets).
– Monitoring results and side effects.
- Encouraging the person to perform non-pharmacologic therapeutic options, such as physical activity, massage, heat or cold packs, physiotherapy, relaxation techniques, sensory activities and social engagement as recommended by their clinician.
Pain can create profound distress and anxiety in the person with dementia. Be equipped with strategies to distract or redirect the person as needed. Maintain an open communication with the person’s healthcare provider. As you support the person with dementia in their pain management, remember to keep yourself physically and emotionally well. Ask for help; reach out to family, friends and the Alzheimer Society of Manitoba.
Promoting Awareness: The 10 Warning Signs of Alzheimer’s Disease
Join this informative session to learn about the warning signs of dementia, the changes that occur in the brain and other topics that will increase your understanding about the disease.
Wednesday, July 27, 10 am
National Best Financial Network, 1112 Rosser Ave., Brandon (map)
To register, contact Julie Hockley at 204-729-8320 or email@example.com
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.
Strategies to Maintain Interaction When Communication Abilities Change with Dementia
Thursday, November 17, 7 to 8:30 pm
The Wellington, 3161 Grant Ave., 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 moderate symptoms of Alzheimer’s disease, or other dementias, to enjoy with a family member or community care partner.
Click here for information about this program.
This is an eight-week program for the person with dementia and their care partner to learn about the progression of dementia, effective communication skills, changing behaviours, coping strategies, options in community living and community resources.
Eight Wednesdays, October 5 to November 23, 10 to 11:30 am
Click here for more information or contact the Client Support Coordinator at 204-943-6622 or firstname.lastname@example.org.
Living with Dementia: First Steps
A seminar in three parts on Saturdays: September 17, October 15 and December 3, 9 am to 12 pm.
Click here for more information or to register for Saturday, September 17.
Click here for more information or to register for Saturday, October 15.
Click here for more information or to register for Saturday, December 3.
Location: Riverwood Square, 1778 Pembina Highway, Winnipeg (map)
Cost: $10 per Saturday. Includes refreshments and resources.
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.
Saturday, October 22, 9 am to 4 pm
4th Floor Assiniboine Centre, 150 McTavish Ave. E., Brandon (map)
Cost: $10. Resources, coffee and refreshments are provided.
To register, contact Julie Hockley at email@example.com or 204-729-8320 or Tanis Horkey at 204-578-4572.
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 firstname.lastname@example.org, 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 August eNewsletter for more listings of upcoming programs, such as Minds in Motion®, Living With Alzheimer’s or other Dementias and Telehealth, as well as information on support groups, educational sessions and more!
Fast Eddy’s “There and Back” Journey Across Canada
Fast Eddy is a long distance runner who is running across Canada (and back) in support of the Alzheimer Society and the Breast Cancer Foundation. This ultramarathoner is scheduled to be in Winnipeg July 14 to 16. Click here to go to Fast Eddy’s website for more information. Click here to donate directly to this fundraiser.
Art for Alzheimer’s
A custom mosaic art piece created by Winnipeg artist Ashley Ehnes and valued at $700 will be raffled throughout the month of July. Raffle tickets are $5 each or five for $20. Ashley is donating all proceeds to the Alzheimer Society in memory of her grandfather.
Draw date: Friday, August 5
To purchase tickets, contact Ashley at email@example.com
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 firstname.lastname@example.org
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 email@example.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. Click here for more information.
Shift Pop Up Yoga and Meditation
Join these uniquely designed classes for groups of two or more people and help raise money for the Alzheimer Society. Sessions take place at various pop up locations in and around Winnipeg. The cost is $2 per person per event, and for all of 2016, the proceeds will be donated to the Society.
Click here for more information.