In This Issue
It’s Election Time! Let’s Put Quality Dementia Care at the Forefront
Compassion Fatigue Addressed at Dementia Care 2016
Learning from Afar: Telehealth Brings Dementia Education to Rural Areas
Holding on to Mamie: Hard Story Provides Valuable Insight
Minds in Motion Needs Volunteers
Spotlight on Current Research: Anemia and Mild Cognitive Impairment
Caregiver Tips: Dementia and Diabetes
Alive Inside: A Story of Music and Memory
It’s Election Time: Let’s Put Quality Dementia Care at the Forefront
41st PROVINCIAL GENERAL ELECTION, APRIL 19, 2016
This article is the first of a three-part series. Stay tuned to find out more about how you can help the Alzheimer Society bring forward important issues that will help better the care for people with dementia and their families.
During an election run-up, the public hears the aspirations of each party. We learn about the policies that would move forward if a party were to come to office. It then becomes our task, as voters, to decide which party’s position will make a difference in the issues closest to our hearts.
In other words, elections give us an opportunity to speak out about the things that concern us. By sharing our personal stories with candidates, we let them know about changes we think would have a positive influence on our future.
“As advocates of people with dementia and their caregivers, we at the Alzheimer Society of Manitoba are listening to your concerns,” says Wendy Schettler, CEO of the Society. “We intend to use the election period as a time to present these concerns to candidates across the province.”
Here are the issues you have told us about, and we pledge to bring them forward:
- The public needs more information about dementia and how to be an inclusive, supportive, dementia friendly community. Read more…
- People with dementia and their family care partners need greater support in order to age in place with the greatest possible physical, emotional and cognitive health. Read more…
- People who are living with advanced dementia require living environments that support their needs for both psychosocial and physical care. Read more…
You can assist the Alzheimer Society in its advocacy by raising your voice to help make our message stronger. Here are four things you can do to encourage the Government of Manitoba to respond to these concerns, and in doing so, help families live better with dementia:
– Be prepared to talk to your candidates about these issues when they come to your door.
– Write a letter or send an email to tell them how important these issues are to you.
– Make a phone call to your candidates to discuss your concerns.
– Consider using social media to interact with candidates about these topics.
With each voice heard the message will grow stronger. By working together, we will be a powerful engine for change, creating a better future for people with dementia.
Click here to watch an election message from our CEO, Wendy Schettler.
Watch for more video clips coming to our website!
Please watch our website over the next weeks. We will be adding video clips from members of the public who, like you, want to discuss the importance of quality dementia care. As we receive responses from the party leaders, we will post their replies.
To learn more about each of these issues, we invite you to visit our website and click on the
Advocacy – Speak Up for Change button. There, you will find background information about the topics and specific actions we are bringing forward.
Let’s use Election 2016 to speak out for action on important matters about dementia care.
Compassion Fatigue Addressed at Dementia Care 2016
If you are a healthcare professional caring for people with dementia, you’ll want to note an upcoming two-day learning opportunity. Dementia Care 2016 is an Alzheimer Society-sponsored conference on March 7 and 8 at Canad Inns, Polo Park in Winnipeg.
Featuring speakers from across Canada and beyond, Dementia Care covers a wide variety of key topics. Experts will speak on far-reaching and thought provoking topics, such as physician assisted dying and trends in dementia research. They’ll also address day-to-day concerns to help caregivers do the best job possible, including working as a team to provide quality care, making mealtimes better and the importance of implementing person-centred care.
Keynote speaker Beth Perry, PhD, is one such expert. A registered nurse and professor in the Faculty of Health Disciplines at the Centre for Nursing and Health Studies at Athabasca University in Edmonton, Beth is an authority on the topic of compassion fatigue. Using stories, poetry, photographs and music, she will motivate caregivers to identify and take steps to reduce this difficult experience often faced by family and friends caring for someone with dementia.
What is Compassion Fatigue?
“First, I’d like to say what compassion fatigue is NOT,” says Beth, who was principle investigator for two studies on the topic and a team member of a third project. “It does not mean that a caregiver lacks compassion. Caregivers with compassion fatigue remain compassionate and would go beyond the call of duty to provide excellent care.”
That, she explains, is what may be part of the problem. People with compassion fatigue are emotionally and physically exhausted from witnessing the suffering of someone they care about, while at the same time being unable to alleviate the suffering. She likes to use LaRowe’s succinct definition: compassion fatigue is a “debilitating weariness brought about by repetitive, empathic responses to the trauma and suffering of others.” 1
Family caregivers often have the preconditions for compassion fatigue: they witness suffering of the person they care about, they feel compassion and they are motivated to reduce the suffering. Couple that with some caregivers’ tendencies to care too much for others and not enough for themselves, and the risk for compassion fatigue increases. “These caregivers can become socially isolated, anxious, depressed and physically ill,” says Beth. “They can experience a decline in the energy needed to care for others as well as experiencing ‘frazzled tiredness.’”
In her research, Beth interviewed a woman named Shelley, whose mother resided in a long-term care facility. In helping to care for her mother, Shelley experienced compassion fatigue. She was exposed to cumulative losses as she watched her mother’s physical and mental health decline, and Shelley developed insomnia and anxiety. “From the first day we brought mom in, I have been her voice,” said Shelley. “She can’t defend herself. I have to speak up for her. Every day when I come to see her I see she is a little more absent. I see life slowly leaving her once sparkly eyes. I try so hard to make her comfortable and to keep the channels of communication going, but I feel like a failure. Even though I no longer get a response I have to keep trying.”
Staff members in care facilities can help family caregivers like Shelley by watching for signs of physical, emotional, spiritual and social exhaustion. They can intervene by providing support and resources – or even just permission to take some time away.
“Professional caregivers can also help to prevent compassion fatigue in family members by providing excellent care to the person with dementia so that the family caregiver feels confident about taking time away,” says Beth.
The sooner the person with compassion fatigue receives support (or even permission to take some time away), the more likely the condition will be minimized.
Beth Perry will present on the topic of compassion fatigue on Tuesday, March 8 at 10:45 am (Concurrent Session 3A) at Dementia Care 2016 at Canad Inns, Polo Park.
1 LaRowe, K. (2005) Breath of Relief: Transforming Compassion Fatigue into Flow. Acanthus,
Boston MA., p. 8.
Rural living has many benefits, but it also comes with unique challenges. Because of small populations, for example, rural areas may have fewer options for educational opportunities. Using technology, the Alzheimer Society has found a way to remedy that situation: it is connecting Manitobans to information and services through Telehealth videoconferencing, allowing families to learn more about dementia closer to home.
“In many communities, there are simply not enough people to offer an education workshop,” explains Karen Lambert, North Central Regional Coordinator, Alzheimer Society of Manitoba. “Telehealth is a great way to bring dementia education to families who may not otherwise have access to the information.”
The Telehealth series are live seminars streamed to more than 40 healthcare facilities across the province. Audiences are able to see, hear and interact with the speaker on a television screen. Session topics provide families with the resources and skills to help them live well with dementia for as long as possible.
“Learning new skills can help caregivers and families adapt to the daily realities of caring for a person with Alzheimer’s,” says Karen. “It is also a great way to bring together families who may be going through similar situations,” she adds.
After a session is finished, audiences have a chance to ask the speaker questions. This makes the presentation more personal and interactive.
“Some families may not even realize that there is a support system out there,” says Karen. “After attending a Telehealth session, a person might feel more comfortable about the idea of calling the Society. Once they make the call, they’ll be able to talk with a counsellor who can provide them with support and help them to strategize their next steps.”
For a complete list of locations or to register online, visit alzheimer.mb.ca. For more information contact Norma Kirkby, Program Director, Alzheimer Society of Manitoba at firstname.lastname@example.org , 204-943-6622 (in Winnipeg) or 1-800-378-6699 (in Manitoba).
Upcoming Telehealth presentations:
Tuesday, February 2, 2016 – The Progression of Dementia
Presented by: Dr. Cornelia (Kristel) van Ineveld, Associate Professor, Geriatric Medicine; Site Medical Director, Geriatrics St Boniface General Hospital, Winnipeg
Tuesday, March 1, 2016 – Dementia: Is it Safe to Drive?
Presented by: Staff Nurse, Medical Assessment Unit, Manitoba Public Insurance, Winnipeg
Tuesday, April 5, 2016 – Becoming a Resilient Caregiver
Presented by: Norma Kirkby, PHEc, Program Director, Alzheimer Society of Manitoba, Winnipeg
You are not alone. We are here to help.
Call your local Alzheimer Society office or 1-800-378-6699 today.
When Elizabeth Murray started finding notes around her mother’s house, she saw a reflection of herself that she couldn’t recognize. The notes were filled with frustration, anger and hostility that her mother (Mamie Murray) had been feeling towards her. Even though Elizabeth knew that these feelings came from her mother’s battle with dementia, they were difficult for her to read. To help cope, she started to do some writing herself.
Holding on to Mamie is an autobiographical account of Elizabeth’s experiences as a caregiver. Stories of Mamie Murray’s life are interspersed with Elizabeth’s journey as a caregiver; a journey she took while fighting her own disease – cancer.
According to Elizabeth, writing the story began as a quest for redemption. “I was trying to find evidence I wasn’t this mean and spiteful daughter,” she says. Elizabeth wrote the book over the course of many years. It was an on-again off-again endeavor that kept bubbling to the surface.
One of her hopes is that her book will raise awareness about dementia and how it can be a hard journey for caregivers. “Intellectually, I was able to understand that it was the disease changing my mom, but it was hard to accept that emotionally and not take it personally,” says Elizabeth.
When her mother’s doctor first suspected she might have dementia, Elizabeth didn’t know much about it and initially pushed aside concerns. “One of my biggest regrets is that I didn’t contact the Alzheimer Society of Manitoba for resources,” she explains.
Addressing the Stigma
She hopes the book will also help address some of the stigma surrounding the disease. Dementia can be isolating, both for the person with the disease and the caregivers. She wants people to know it’s not shameful and they shouldn’t hide. “I hope the book will be cathartic for people who are going through a similar experience,” she says. “It’s ok to feel overwhelmed because it’s a big journey.”
Personal narratives like Elizabeth’s help spread awareness about what living with dementia is like. They can be hard stories to tell, but they offer valuable insight into the full effect of the disease. “Everyone should hear more personal stories, especially medical health providers,” says Elizabeth.
As for the bigger picture, Elizabeth says there is a need for more community-based support and a need for more assistance for caregivers. Dementia-friendly communities can go a long way in helping to address the stigma and to ensure people have the best quality of life.
Holding on to Mamie is available at McNally Robinson or by contacting the author at email@example.com
Alzheimer Society of Manitoba is currently recruiting program volunteers for the Minds in Motion® spring 2016 season. This program focuses on promoting physical activity, socialization and mental stimulation for people with dementia to enjoy with a family or community care partner. Click here to find out more about the program. Click here for a listing of community locations.
As a Minds in Motion® program volunteer, you will:
- Be available for a 3-hour shift a week, for 8 consecutive weekday mornings or afternoons
- Learn to facilitate recreational programs for adults of varied ability
- Engage socially with participants
- Assist with the set-up and clean-up of refreshments and program equipment
Click here for more information.
Spotlight on Current Research
Results from a population-based study in Germany suggest that anemia is associated with an increased risk of mild cognitive impairment (MCI).
MCI is a condition where people have problems with memory, language, thinking or judgement that are greater than the cognitive changes associated with normal aging, but the changes are not serious enough to interfere with daily life and independence.
The study included 4,033 participants with available information on hemoglobin levels and cognitive assessment. Anemia was defined as hemoglobin lower than 13 grams per deciltre ( g/dl) in men and lower than 12 g/dl in women.
Out of the total participants, 163 had anemia and 3,870 were without anemia. The participants who had anemia showed lower cognitive performance in all cognitive subtests. After adjusting for age, those with anemia had a significantly lower performance specifically in the immediate recall task and the verbal fluency task.
To further evaluate the correlation, total participants were divided into those with a diagnosis of MCI (579) and cognitively normal participants (1,438). MCI was observed to be almost twice more common among the participants with anemia than those without anemia.
Varied tests and observations performed on the sample population suggest an association between anemia and MCI independent of cardiovascular risk factors. These initial findings can provide relevant basis for risk reduction strategy in the future. Anemia is said to be present in about 10 percent and 20 percent of those over the age of 65 and 85, respectively. An estimated 43 to 68 percent of those living in long term care facilities are also believed to have anemia. As anemia can often be effectively treated, maintaining hemoglobin levels within normal limits might pose as an important strategy in maintaining cognitive abilities.
Link Between Anemia and Mild Cognitive Impairment (According to a population-based study published in the Journal of Alzheimer’s Disease) http://www.iospress.nl/ios_news/link-between-anemia-and-mild-cognitive-impairment/
A person with dementia may have coexisting diabetes, and each condition can significantly affect the other. The changes in the person’s abilities can impact how well they can manage their diabetes. Diabetes can affect the safety and well-being of a person with dementia.
Well-balanced support is important to help the person maintain independence and safety as they manage their health. Here are some suggestions:
- Discuss the treatment plan for both dementia and diabetes with the person’s doctor.
– Keep a record of the medications and take note of any side effects.
– Ask about the appropriate blood glucose level to maintain and post a record in a visible place.
– Learn how to use the glucose monitoring device and assist the person as needed.
– Learn the signs to watch for when blood glucose is either high or low.
- If treatment for diabetes includes insulin injection:
– Post the schedule where the person can see it.
– If the person can still do their own injection but is forgetting the timing and amount, keep
materials in a locked place until they are required.
– Cue the person when preparing the injection.
- Watch for changes in the person’s eating habits and diet to avoid causing unnecessarily high or low blood glucose. Keep a consistent mealtime schedule.
- Be watchful of changes in behaviours as they may be a symptom of high or
low blood glucose levels.
- If the person frequently uses the toilet:
– Place door signs to help the person find the toilet easily.
– Choose clothing that is easy to remove.
A person with dementia can manage diabetes successfully with support from health practitioners and family or friend caregivers. Being informed about treatment, precautionary measures and potential complications helps caregivers to keep the person with dementia healthy while maintaining the person’s independence in managing their health for as long as possible.
Explore music’s ability to combat memory loss and uncover the deepest parts of ourselves. The Catholic Health Corporation of Manitoba, through its Compassion Project initiative, will present the documentary “Alive Inside: A Story of Music and Memory” (2014) on February 11th from 12 to 1:30 pm at the Samuel N. Cohen Auditorium, St-Boniface Hospital Albrechtsen Research Centre.
Click here to find out more.
Minds in Motion® Program
Winter sessions of the eight-week Minds in Motion® program are currently underway at six Winnipeg locations. 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 or call the location closest to you find out about spring sessions
starting in April.
Click here to read a story in our December 2015 eNewsletter about Lucy and George Beckta’s experience in the program.
Dementia…Answers You Need
What is Alzheimer’s disease and dementia? What changes do people experience? What are the warning signs? Learn the answers to these questions and more!
Wednesday, February 3, 1 to 3 pm
Little Saskatchewan Health Centre, Gypsumville (map)
To register or for more information, contact Jackie Dokken at 204-268-4752 or firstname.lastname@example.org
The Alzheimer Journey: Navigating the Road Ahead
This four-part video series will help families to prepare for their journeys with dementia.
Thursdays, February 4 to 25, 7 to 8:30 pm
Villa Youville, 210 Centrale Ave., Ste. Anne (map)
To register or for more information, contact Nicole Trudeau at 204-422-3008 or email@example.com
Living with Alzheimer’s Disease or Other Dementias (Workshop)
Our one or two-day workshops provide valuable information for those who are caring for
a person with dementia.
Saturdays, February 6 and 13, 9 am to 2 pm
Seine River Retirement Residence, 1015 St. Anne’s Rd., Winnipeg (map)
Cost: $25. Includes lunch and resources.
Register online at alzheimer.mb.ca or by email at firstname.lastname@example.org or
call 204-943-6622 or 1-800-378-6699.
Saturday, February 6, 9 am to 3:30 pm
Roblin Health Center, 15 Hospital St., Roblin (map)
Cost: $20. Includes lunch and refreshments.
To register contact Wanda Sime at 204-638-4483 or email@example.com.
This is an eight-week program uniting families and community members with individuals who are
experiencing the early stages of dementia.
Wednesdays, February 17 to April 6, 10 to 11:30 pm
Click here for more information or contact the Client Support Coordinator at at 204-943-6622 or firstname.lastname@example.org
Telehealth Family Education
The Alzheimer Society of Manitoba offers family education for those experiencing dementia in over
40 communities across the province via video technology. The following topics will be presented:
The Progression of Dementia
Tuesday, February 2, 6:30 to 8 pm
Dementia: Is it Safe to Drive?
Tuesday, March 1, 6:30 to 8 pm
Becoming a Resilient Caregiver
Tuesday, April 5, 6:30 to 8 pm
Tag You’re It: Taking Turns Giving Care
Promotes a Healthy Balance in Family Life
Learn the recipe for going the distance through the marathon of caregiving.
Thursday, February 18, 7 to 8:30 pm
Metropolitan Kiwanis Courts, 2300 Ness Ave., Winnipeg (map)
Click here for more information and to register.
Reducing Risk of Falls for People with Dementia
Discuss strategies to prevent falls so injuries and hospitalizations can be prevented.
Wednesday, March 16, 7 to 8:30 pm
River Ridge Retirement Residence, 50 Ridgecrest Ave., Winnipeg (map)
Click here for more information and to register.
Advance Care Planning: It’s for Everyone!
Come and talk about end of life care and learn about health care directives and advanced care plans.
Wednesday, April 13, 7 to 8:30 pm
Amber Meadow, 320 Pipeline Rd., Winnipeg (map)
Click here for more information and to register.
Quality Care; Quality of Life
March 7 & 8, 2016
Canad Inns Polo Park
Click here for the Dementia Care 2016 brochure to see session descriptions and presenters.
Click here for more information and to register.
Thanks to the Sponsors of Dementia Care 2016:
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 email@example.com, 204-943-6622 (in Winnipeg) or 1-800-378-6699 (in Manitoba).
21st Annual Chili Cook Off – Brandon, Manitoba
Friday, March 11
6 to 7:30 pm
Houstons Country Roadhouse in Brandon (map)
Come out and enjoy a bowl of chili, a bun and a drink for only $10. The evening also includes a Rainbow Auction and a 50/50 draw.
Competitors will showcase their chili in an attempt to win an award in the following categories:
1) Fuel Injected
2) The Good, The Bad, The Mild
3) No Holds Barred
4) People’s Choice
Make your chili go even further and raise pledges online. If your friends can’t make it to the Cook Off, ask them to support your efforts and sell them a virtual bowl of chili!
Click here for the Chili Cook Off website!
For information, email Jodee at firstname.lastname@example.org or phone 204-729-8320.
Where can you find northern lights and polar bears, totem poles and icebergs, maple leaves and wheat fields? You’ll find these, and many more symbols of our great land, at the Alzheimer Society’s
A Night to Remember in Canada. Join us for an evening of great food, entertainment, raffles and auctions. Book your tickets or table of 10 today so you don’t miss out! Tickets are $220 per person with a half tax receipt. Tables are $2,200 with sponsorship benefits.
Thursday, February 11, 2016, 6 pm
RBC Convention Centre, 375 York Avenue, Winnipeg (map)
For more information, contact Kim Mardero at 204-943-6622 or email@example.com
We are currently accepting items for our auctions and balloon pops. To donate an item or gift certificate, contact firstname.lastname@example.org
Click here for more information and to book your table.