In This Issue
#StillHere: January is Alzheimer Awareness Month
#StillHere: Getting Along Just Fine with Dementia
Rachel Smith’s Story: My Dad is #StillHere
Dementia: Are You Worried? Become Informed at an Education Evening
Care at the End of Life
Someone is Coming to Your Door in January!
Spotlight on Current Research: Watch Your Weight!
Research Participants Needed
Caregiver Tips: Living Alone with Dementia
It’s January and it’s Alzheimer Awareness Month. During January and throughout the year, we challenge all Manitobans to rethink their perceptions of Alzheimer’s disease and other dementias. We believe it is possible to live well with dementia, and our campaign, #StillHere, encourages everyone to understand the people behind the disease and to be there for those who are #StillHere.
In this eNewsletter, you will find a story about how Don de Vlaming, who was diagnosed with Alzheimer’s disease three years ago, is still living well. You’ll also read about how Rachel Smith has learned to be positive about her Dad’s diagnosis and to appreciate every moment she has with him.
Readers are encouraged to click here to unveil five personal stories, including Don’s and Rachel’s, on our January Awareness page. All of the individuals featured are affected in some way with dementia, and in these first-person accounts they all adamantly claim to be #StillHere.
Click here for more information about January Awareness month and to find out what you can do to be there for those who are #StillHere.
#StillHere: Getting Along Just Fine with Dementia
In his late seventies, Don is still here both in body and in mind. He wants all those Canadians who don’t think it’s possible to live well with dementia to think again.
“When I get together with other people who have dementia, we talk and we share ideas,” he says. “We relate to each other beautifully by talking about people’s interests, such as cooking or a trip someone has taken. We all get along just fine.”
What frustrates Don is that things don’t go quite as smoothly when he faces the world outside his Alzheimer Society support group. “We are treated differently,” he laments. “Other people have expectations that we can’t meet. They don’t realize that while we live in the same world, our world is a little bit different, but we are still the same people inside.”
January’s Alzheimer Awareness Month campaign addresses Don’s concerns head on. #StillHere emphasizes that life doesn’t end when Alzheimer’s begins. People living with dementia can continue to participate in life and contribute to their communities in their own way, even as the disease progresses.
Anyone who doubts this need only take a peek into the room where Don and his fellow support group participants meet each Thursday. In one corner, two men – one a sports enthusiast and the other a current all-weather cyclist – discuss the recent Grey Cup game outcome. In another corner, a grandmother tells her friends about the adventures of her mischievous grandson. Across the room, a former contractor assists the group’s facilitator to put up a string of lights.
“Look at us!” exclaims Don. “We are all equals…we are all functioning – maybe not in the same way as the rest of society, but we are communicating and enjoying the socialization. We are just friends talking.”
When asked how he’d like to be treated by the rest of the world, Don says, “With respect – just like you’d treat anyone else.”
That concept lies at the root of Alzheimer Awareness month. One of the goals of this year’s campaign is to dispel the myths about the disease and to encourage everyone to see the person beyond the condition. For example, a recent Nanos survey indicated that 47 per cent of Canadians don’t think that people can still live well with dementia. But anyone who visits with Don de Vlaming and the other individuals in his support group would see it differently.
What can people do to help? “Communicate. Be a good listener, and find topics the person is informed about,” suggests Don.
It sounds simple, but following Don’s sage advice may be the first steps in helping Canadians recognize the dignity and worth of people with dementia.
Click here to read Don’s personal story about being #StillHere on our Alzheimer Awareness Month page.
Rachel Smith’s dad, Morgan, is living with Alzheimer’s disease. As a guest writer for our January eNewsletter, she shares some stories about her family’s journey. In doing so, Rachel provides insight into how a positive attitude towards the disease can help people to appreciate each moment and keep on living well.
When my Dad was diagnosed with Alzheimer’s disease my mind flooded with fears of the future. I wept at the idea of what was to come. But then I realized that I could choose to dread what might happen or I could appreciate my Dad while he is still here. Being told he had Alzheimer’s did not suddenly mean that his life was over. It just meant that now I need to appreciate every moment with him. Of course it is not an easy disease to live with, but I strongly believe that the experience is about attitude.
Despite what my Dad is going through, he still has a positive attitude and a smile on his face. He lights up when someone asks him about his travels in Asia. He and I have wonderful conversations where he reminisces about how “it was like a different world.” When I ask him about growing up in Newfoundland, I can see his eyes sparkle with visions of his childhood. He tells me tales of his pet crow that used to steal the pins off the clothesline, or he describes simpler times when he would go down to the wharf to get a fish for dinner. His stories are so vivid that I feel as though I am there experiencing them with him.
He has always loved jokes – hearing them, reading them, but especially telling them. Although his jokes are not as advanced as they used to be, he still gets some good ones in when you least expect it. I find he is especially sharp when visiting with friends and family. He loves company and gets so excited when someone comes to visit him. We recently began receiving respite twice a week, and he has no trouble remembering their names and telling us afterward what a nice day he had with them.
When it comes to keeping his mind active, he was never one for puzzles or games, but he has always liked computers and technology, so my Mom got him a tablet for his birthday. It did not take him long to figure out how to use it, and now one of his favourite pastimes is playing on it.
I think I most admire my Dad for his eagerness to help others and his gratitude for those who help him. He is such a kind and gentle man. He expresses his thanks often and makes sure my Mom and I know how much he loves us. When I think of my Dad I do not want to think of a disease; I want to think of who he is and how strong he is to get out of bed every morning with a smile on his face, ready to meet the challenges ahead.
Click here to read Rachel’s personal story about being #StillHere on our Alzheimer Awareness Month page.
But the reality is that people with dementia and their families can live well with the disease. To learn more about dementia, the importance of a diagnosis and how to move forward in a positive way, you are invited to attend the January Awareness Education Evening on January 28 at the
Samuel N. Cohen Auditorium, St-Boniface Hospital Albrechtsen Research Centre.
This event will provide valuable information about dementia and will inspire participants to continue their own journeys with hope. The evening will begin with a talk by Don and Sylvia de Vlaming, who will provide an honest and compelling account of how they have lived well since Don’s diagnosis. Click here for a preview of their story in this eNewsletter, and click here to go to our Alzheimer Awareness page where you will find Don’s personal account about being #StillHere.
After Don and Sylvia’s presentation, a panel of four experts will offer the latest information in the following areas:
Do changes in memory and thinking mean a person has dementia?
Presented by: Mandana Modirrousta, MD, PhD, FRCP(C), Department of Psychiatry, St. Boniface General Hospital, Winnipeg
What is research uncovering about this complex disease?
Presented by: Cornelia (Kristel) van Ineveld, MD, MSc, FRCP(C), Geriatric Medicine; Site Medical Director, Geriatrics, St. Boniface General Hospital, Winnipeg
How can family care partners protect their own health while caring for another?
Presented by: Lesley Koven, PhD, Clinical Psychologist and Assistant Professor, Department of Clinical Health Psychology, Faculty of Health Sciences, University of Manitoba, Winnipeg
How can communities better support people impacted by dementia?
Wendy Schettler, CEO, Alzheimer Society of Manitoba, Winnipeg
For more information, call 204-943-6622 or email email@example.com
Click here to register online.
See you there!
It is not always easy to talk about, but at some point during a dementia journey, “palliative care” will come into the conversation.
What is palliative care?
Palliative care is a type of health care for people and families facing life-threatening illness. It helps the person to achieve the best possible quality of life right up until the end of life. Palliative care is also called end-of-life or comfort care.
“The main focus of palliative care is to maintain a person’s comfort and dignity rather than pursue tests and treatments that can no longer affect the outcome of an illness or disease,” says Rachael Mierke, First Link Coordinator at the Alzheimer Society of Manitoba. Palliative care does not refer to a specific “place of care,” such as a hospital; rather, it is an approach to overall care at the end of life.
While taking care of a person’s comfort and dignity will often revolve around physical needs – for example, controlling pain – it also involves taking into consideration any cultural, spiritual or religious rituals that need to be in place prior to or at the end of life. It involves a “team approach” to care, with the person affected at the centre.
The Hard Conversation – Advance Planning
When the time comes for palliative care, the person with dementia may no longer be able to articulate their wishes, or they may not even know what those wishes are anymore. The decisions from this point on are made with the health care team and designated substitute decision makers working together; the health care team can, upon consideration of the prognosis (the stage of illness progression) of the individual with dementia, explain options.
“Family members might have differing opinions on what steps to take, and that can lead to a lot of added stress; it is essential for substitute decision makers to focus on what they believe their family member would prefer rather than on what they’d wish to see happen,” says Rachael.
It is important to have discussions early on in the diagnosis, particularly when the individual with dementia is able to articulate their wishes. These discussions aren’t always easy, but they help make sure the individual’s wishes are fulfilled and reduce the chance for conflict when the time for palliative care arrives.
There are many complex and challenging problems that come with a dementia diagnosis, making it hard to give an accurate prognosis. In turn, this can make it difficult to know when to begin the transition to palliative care. Coming to the understanding that active treatment may no longer be the best care for the person with dementia is a process; during this time, family members and caregivers can discuss what to expect as the disease progresses, along with comfort care options that will provide the best possible quality of life.
“People can always call us for information,” says Rachael. “We have support staff who can help point people in the right direction.”
While January may be the coldest month of the year, it’s also a month that warms the hearts of people with dementia and their families because of the generosity of neighbourhood donors and the willingness of canvassers to spare an hour or two of their time.
Be part of this campaign by opening your door when the Alzheimer Society of Manitoba comes knocking or by volunteering your time as a canvasser.
The money or time you donate helps us to provide information, education and support for people affected by dementia and their families.
New this year! Text us a $10 donation.
For a quick and easy way to make a difference, just text the word “DOOR” to 45678 and $10 will be donated to the Alzheimer Society. Challenge your friends and family to do the same!
Click here for more information on our Door to Door campaign.
Spotlight on Current Research
Researchers at the National Institute on Aging wanted to determine if there were links between midlife body mass index (BMI) and the age at onset, severity of brain damage and degree of beta amyloid deposition in people with Alzheimer’s disease.
Data was gathered from 1,394 cognitively normal participants in the Baltimore Longitudinal Study of Aging (BLSA). Midlife overweight participants (as determined by their BMI at age 50) received cognitive testing every one to two years for the duration of the nearly 14-year study. About 10% of the group (142 participants) eventually developed Alzheimer’s disease. Researchers found that each unit increase in BMI at age 50 predicts earlier onset of Alzheimer’s disease by nearly seven months.
Two subgroups of BLSA participants received differing tests to determine the severity of build-up of plaques and tangles in the brain. One group consisting of 191 participants underwent autopsy and neuropathological assessment. Results showed that higher midlife BMI was associated with more neurofibrillary tangles as seen in autopsy. This was also evidenced in those who did not develop Alzheimer’s disease. A second group of 75 individuals who did not have Alzheimer’s were administered brain amyloid imaging. Those with higher midlife BMI were found to have more amyloid deposits in the precuneus, an area of the brain that often shows the earliest signs of Alzheimer’s disease.
Further studies are warranted to validate these outcomes. However, the study suggests that it is wise to maintain a healthy BMI at midlife to potentially delay the onset of Alzheimer’s disease.
If you are concerned about your weight or that of the person you’re caring for, consult your doctor or health practitioner for information about how you can make a life change that could benefit your brain health.
Are you working and providing care for a relative or friend with dementia? If so, you might consider participating in a study. Participants from Brandon and surrounding rural areas in Manitoba are being recruited.
Researchers 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. Participants may also choose to take part in an eight-week program of two-hour educational sessions. After the eight-week program, you may choose to participate in a 75-90 minute focus group.
A diagnosis of dementia does not automatically mean that a person is incapable of living alone or looking after their day-to-day activities. However, when someone with dementia lives independently, family and friends may worry about safety risks. Here are some steps that will support and respect the living choice of the person while ensuring their safety and well-being.
- Maintain balance between acknowledging independence and ensuring safety. Avoid being overly watchful about every detail, but consider planning regularly scheduled wellness checks.
- Involve other family members and friends who are willing and available to provide assistance. Discuss what each person can offer so the support is organized to better meet the needs of the person. Accept the fact that not everyone can provide equal amounts of time.
- Ensure a safe home environment. Use electrical appliances that shut off on their own. Install a smoke detector and check the batteries regularly. Leave written reminders such as “turn off the stove” or “unplug the iron.”
- Provide the person with visual cues and reminders. Label cupboards with words or pictures that describe what is inside. Write telephone numbers in large print and post by the phone. Include people to contact in an emergency.
- Assist in managing finances. Encourage the person to discuss banking options with the bank manager. Arrange for direct deposit of cheques and automatic payment of bills.
Living in a place that is safe, familiar and comfortable is important to everyone. Support from family, friends, neighbours and community service providers will help the person with dementia to continue living safely and independently in the place of their choice for as long as possible.
For more information on living alone, check out the fact sheet at this link: www.alzheimer.ca/~/media/Files/national/brochures-tough-issues/Tough_Issues_Living_Alone_e.pdf
Minds in Motion® Program
Starting in January, winter sessions of the eight-week Minds in Motion® program will be offered at five 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 to register.
Click here to read a story in our December 2015 eNewsletter about Lucy and George Beckta’s experience in the program.
Incontinence: Can We Talk About It?
This informative session looks at this common problem and what caregivers can do to help.
Wednesday, January 13, 7 to 8:30 pm
Shaftesbury Park Retirement Residence, 905 Shaftesbury Blvd., Winnipeg (map)
Click here for more information and to register.
Dementia…Are You Worried?
Are you worried that someone in your life has dementia? Then don’t miss this educational seminar
that will provide information from both personal and medical perspectives.
Thursday, January 28, 7 to 8:30 pm
Samual N. Cohen Auditorium
St-Boniface Hospital Albrechtsen Research Centre,
351 Tache Ave., Winnipeg (map)
Click here for more information or call 204-943-6622 or email firstname.lastname@example.org
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.
Saturday, January 30, 9 am to 3:30 pm
Stonewall & District Health Centre, 589-3rd Ave., Stonewall (map)
Cost: $20. Includes refreshments and resources.
Click here for more information or contact Jackie Dokken at
204-268-4752 or email email@example.com
To register contact the South Interlake Seniors Resource Council at
204-467-2719 or firstname.lastname@example.org
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 email@example.com 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 firstname.lastname@example.org.
This is an eight-week program uniting families and community members with individuals who are
experiencing the early stages of dementia.
Click here for more information or contact the Client Support Coordinator at at 204-943-6622 or email@example.com
Telehealth Family Education
The Alzheimer Society of Manitoba offers family education for those experiencing dementia in 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 poster.
Click here for the Dementia Care 2016 brochure to see session descriptions and presenters.
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 firstname.lastname@example.org, 204-943-6622 (in Winnipeg) or 1-800-378-6699 (in Manitoba).
Door to Door Campaign
The Alzheimer Society is looking for volunteers to knock on doors and request donations this January during Alzheimer Awareness Month. We hope that you can spare an hour or two to canvas a street in your neighbourhood.
Click here for more information or to register.
Not able to canvass in your neighbourhood? We have two other great ways for you to help:
- Canvass your friends and family! You can even take your canvassing online – just register as a canvasser online and send an email to friends and family with a link to your donation page. Click here.
- New this year! Text us a $10 donation. For a quick and easy way to make a difference, just text the word “DOOR” to 45678 and $10 will be donated to the Alzheimer Society. Challenge your friends and family to do the same!
Touch Quilt Presentation
On January 11, 60 Touch Quilts will be presented to the residents of Crocus Court Personal Care Home in Roblin, Manitoba (map). Family members, friends, staff and media are invited to the presentation at 2:30 pm, where a quilt will be given to each resident.
The Touch Quilt Project provides individuals who live in personal care homes the opportunity for sensory stimulation, which can increase happiness, enjoyment and relaxation.
Click here for more information about the Touch Quilt Project.
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.