In This Issue
Dementia? Me? I can’t believe it!
A Dementia Diagnosis in Your Family: Steps to Take
It Never Hurts to Laugh
Volunteers Needed for Minds in Motion® Program
Spotlight on Current Research: Link Between Stress and Alzheimer’s Disease
Caregiver Tips: A Dementia Diagnosis – When and How do you Break the News
to Family and Friends?
Touch Quilt Program
Anything for Alzheimer’s
December 1st is GivingTuesday
GivingTuesday is a global day of giving. It is a time to celebrate and encourage activities that support charities and non profits. Whether it’s making a donation, volunteering time, helping a neighbour or spreading the word, GivingTuesday is a movement for everyone who wants to give something back.
Click here to give to the Alzheimer Society on December 1st – or any day!
Dementia? Me? I can’t believe it!
Denial is a natural coping mechanism. It’s part of the human condition, and we are all prone to it when faced with difficult circumstances. It’s a way for us to cope with feelings of anger, fear and loss. Denial helps us to maintain a sense of normalcy when unavoidable change is afoot.
Believing that ‘this is not possibly happening to me’ is a common reaction when dealing with a dementia diagnosis, especially if the diagnosis comes in the early stages of the disease.
“People who are at the beginning of their Alzheimer’s disease journey might not have insight into their situation – they honestly may not know something is wrong,” says Marilyn Maartense, First Link® Coordinator at the Alzheimer Society of Manitoba. This is often because people are still able to fully function and do not notice the symptoms, such as memory or judgement lapses, that are obvious to family members and other observers.
In situations like this, rejecting the reality of the diagnosis can affect the personal safety of the person with dementia. It ultimately limits the ability to cope with challenges, especially as the disease progresses. It is important that care partners take an active, compassionate and proactive role in addressing denial.
“While it’s not a good idea to try to force someone through the emotions they feel when they are given a dementia diagnosis, it is crucial to help them understand it,” says Marilyn.
Working Through Difficult News
Support and education are important in helping someone work through difficult news. Care partners can reach out to the Alzheimer Society of Manitoba for assistance. “There are many different aspects to a dementia diagnosis – it’s not just memory loss. For example, family members might notice that there may be impaired judgement, but they may not necessarily associate this with dementia. Sometimes it takes a third party to help put everything into perspective. We can fulfill that role,” says Marilyn.
Having a family meeting is another good strategy when some family members find it difficult to accept the diagnosis of dementia. It gives everyone an opportunity to share concerns and talk about possible solutions. They will be able to see how important the issue is to everyone and can start their own journey of understanding and acceptance.
Accepting the diagnosis can be hard. It is a life-changing moment, after all. But by accepting it and moving past denial, care partners and the person with dementia will be able to access the tools and supports available to increase their overall quality of life.
“Take some time to work through your feelings and get your head around this news. Breathe, take a step back and reflect on your thoughts,” suggests John Nyhof, First Link® Manager, Alzheimer Society of Manitoba.
Once you have taken some time to wrap your head around the diagnosis, learn as much as you can about the disease and how to provide the best possible care. “Figure out what you are able to process and step away from it when you start feeling overwhelmed,” says John. “You can always come back to it when you are ready.”
Learning about the disease can help you take control and make decisions that will let you and your family member live well with dementia for as long as possible.
Plan for the Future
The more you learn about the disease, the better you will understand what the future may hold, allowing you to plan accordingly. Decisions about work and personal issues are better made while the person is able to be involved in the decision-making process.
“It is important to discuss legal and financial issues soon after a diagnosis,” suggests John. “This way the person with dementia can participate while they are still able.”
Set Realistic Expectations
As the disease progresses, it will affect the person’s day to day functions. Learn about changes dementia will cause so that you have realistic expectations of the person’s abilities. Ask the person how you can help them stay independent and maintain a sense of control.
“Focus on what the person can do – looking at the glass half full will go a long way,” says John. Although certain skills will be lost as time goes on, emotions and feelings remain. No matter how the disease affects the individual, it is important to treat them with dignity and respect.
Connect with Others
When the time seems right, be honest with family, friends and others. Having a good network of support will help you feel connected and give you a sense of belonging. The more support you have, the better you will be able to manage each situation as it arises.
“Think about how you want to handle the situation and disclose as much information as you feel appropriate or comfortable with,” explains John. The important thing is to find an outlet where you can express your feelings. Caregivers can become isolated and lonely, so it is important to stay socially active.
Take Care of Yourself
While caregiving can be a rewarding experience, often caregivers are physically and emotionally at risk. “It’s easy for caregivers to overlook their own needs, causing possible burn out. Make sure you take time for yourself to refresh your energy,” says John.
Be sure to maintain your physical health, stay active, make healthy food choices and find time for activities you enjoy.
Seek Out Help
Call your local Alzheimer Society to find out what help is available in your area. The more support you have, the better prepared you will be to navigate the road ahead.
The Society can help by directing you to services in your community. They will also provide you with information you need to learn more about the disease, caregiving and coping strategies.
“Come to the Alzheimer Society and meet with one of our staff members. They can help you figure out your next steps,” says John.
Studies have shown that there are physiological and psychological benefits to laughter. It can increase blood flow and strengthen the immune system, as well as bring a feeling of relaxation. When people laugh, they are experiencing positive emotions: in other words, they are happy!
For people with dementia and their families, the responsibilities of care may be overwhelming. Even when the person has moved to a personal care setting, family members may experience distress as they witness the person’s daily living and memory skills continuing to decrease.
Shelley Boles, Recreation Coordinator at Lion’s Personal Care in Winnipeg, works with people in varying stages of dementia during the course of her day. She finds that using humour helps residents to engage with her, even if only for a short period.
“The sillier I am, the more reaction I get,” says Shelley, referring to the funny hats and costumes she’ll don and the songs she’ll sing – all for the sake of a laugh. “I find that even someone in the later stages of dementia will look me in the eye and focus right at me when I’m singing a song they recognize.”
Shelley adapts her programming around the needs of her residents. For example, someone in the earlier stages of the disease’s progression may still understand jokes and be delighted by the funny things that occur in daily life. She’ll pull out joke books and hold a reading corner, and the group will laugh out loud. “Jokes like ‘kids say the darndest things’ go over well, and there is lots of senior humour available on the internet,” she says.
Shelley finds that using humour helps to redirect and calm people with dementia. It also brings back memories of laughing and joking with family and friends. Laughter is a uniting thing: it brings people together, away from the stress and isolation that can accompany dementia.
Humour for the Caregiver
The use of humour can also help family caregivers to get through the trying times, as Reed Winstone discovered when his father had Alzheimer’s disease. Reed explains that his family used humour as a coping mechanism for themselves. “If you can’t laugh, it’s sad and stressful.”
Although it has been quite a few years since his dad passed away, Reed remembers how humour helped to interrupt what could be long periods of stress. The elder Winstone was diagnosed in 1991. He lived at home with his wife – Reed’s mother – until 1995 when the family moved him into care. “By the time he went to the care home, he had become pretty much non-conversant,” says Reed. “Things had become too difficult for my mother to manage.”
Reed and his wife, Arla – who are both regular supporters of Alzheimer Society of Manitoba events – were able to spend lots of time with Reed’s dad, as the care home was right across the street from their home. Sometimes, though, visiting could be hard. “We used humour to make light of the circumstances; at times it really helped us to get through the difficult days,” says Reed.
So when things get tough, try a little humour to brighten the day.
The Alzheimer Society needs volunteers for winter 2016 sessions of the the Minds in Motion® program. This eight-week program focuses on promoting physical activity, socialization and mental stimulation for people with dementia and their care partners. Click here to find out more about the program.
As a Minds in Motion® program volunteer, you will:
- be available for three daytime hours a week for eight weeks
- learn to facilitate recreational programs for small groups of adults of varied ability
- engage socially with participants
- assist with the set-up and clean-up of refreshments and program equipment
Click here to see a detailed volunteer position description.
Spotlight on Current Research:
Researchers from the University of Florida have discovered some evidence of a link between the brain’s stress response and production of amyloid beta protein. They learned that stress causes the release of the hormone corticotrophin releasing factor (CRF) in the brain, leading to more amyloid beta being produced.
The initial phase of the study involved mouse models being divided into a control group and those exposed to acute stress. Results show that the stressed mice had a higher level of the type of amyloid beta that leads to Alzheimer’s disease development. Researchers then treated human neurons with the CEF and noted that there was a significant increase in amyloid protein there as well.
Other testing further showed that CRF caused the enzyme gamma secretase to increase its activity and cause greater production of amyloid beta. When the scientists blocked the CRF receptor that initiated the stress-induced process that generates the amyloid beta, they found it did not change the outcome. They are now investigating other mechanisms that could be used to block the stress hormone directly.
Experiencing some stress is part of everyday life; but as more evidence strengthens the role of stress as a risk factor to Alzheimer’s disease, it is even more important to find ways to manage and reduce stress for long term health.
For more information on the UF study linking stress and Alzheimer’s disease visit:
As a care partner of someone recently diagnosed with Alzheimer’s disease or another dementia, you may hesitate to let others know about the diagnosis. You may be afraid of how family or friends will react to the diagnosis; or you, yourself, may not be emotionally ready to share the diagnosis.
Here are some suggestions that can help you decide when and how to tell family members and friends:
- Involve the person diagnosed with dementia in the decision of when and how to tell others. If the person wishes to and can tell others themselves, support them in their decision. If the person wishes you to tell others, use factual, empathetic and respectful words that maintain the dignity of the person.
- If you feel that others are constantly wondering what is going on, it might be time to tell them about the diagnosis. Do not feel obliged to tell it right at the time of diagnosis, but if you feel that it is important, you may decide to do so.
- Are you afraid they won’t understand? Tell them about the disease and its effects; share books and resources; and provide them with opportunities to ask for details that can help them better understand the situation.
- Invite them to visit and engage with the person with dementia. Give them suggestions about communicating, such as keeping things simple, not correcting the person, sharing stories from the past and giving the person time to process information.
- Understand that others may begin to feel uncomfortable around the person with dementia or drift out of your life. Do not force them to accept right away; continue to connect and revisit their feelings in the future.
- Tell them what they can do to help, such as attending education sessions or support groups with you or staying with the person when you go out to take care of personal matters.
Your decision about when and how to share the diagnosis of the person you are supporting rests on how emotionally prepared and comfortable you are in discussing the matter. Remember, telling families and friends about the person’s diagnosis opens opportunities for assistance and understanding.
The Touch Quilt Project
On October 28, 175 Touch Quilts were presented to the residents of Beacon Hill Lodge in Winnipeg. With this Touch Quilt presentation, the Alzheimer Society has donated over 5,400 quilts to residents in care facilities across the province.
We extend our gratitude to our Silver Sponsor, Jessica Phillips-Dubois, who has generously donated $2,000 to the project. Thank you, Jessica!
Click here for more information about the Touch Quilt Project.
Minds in Motion® Program
The eight-week Minds in Motion® program is currently offered in 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. Winter sessions will be offered at six locations starting this January.
Click here for information or call the location closest to you to register.
The Alzheimer Journey:
Navigating the Road Ahead
Join us for a four-part video series to learn what lies ahead in your journey.
Thursdays, November 5 to 26, 7 to 8:30 pm
Greendale Estate, 231 Park St., Grunthal (map)
Click here for more information or contact Leona Doerksen at 204-326-5771 or firstname.lastname@example.org
They’re Here for You! Disability and Compassionate Care Benefits
Find out about the who, what, when, where and how of the Canada Pension Plan Disability Benefit, Compassionate Care Benefits and health related tax deductions available to a person with dementia and their care partners.
Tuesday, November 17, 7 to 8:30 pm
Riverside Lions Estates, 188 Worthington Ave., Winnipeg (map)
Click here to register online.
Family Education: First Steps
An information and experiential workshop for people supporting a person recently diagnosed with Alzheimer’s disease or another form of dementia.
Saturday, November 28 (Part 2), 9 am to 12 pm
Windsor Park United Church, 1062 Autumnwood Dr., Winnipeg (map)
Click here to register online.
Taking Care of Yourself Through the Ups and Downs of Caregiving
The Alzheimer Society of Canada, Multiple Sclerosis Society of Canada and Parkinson’s Society Canada are co-hosting this webinar event that will provide an opportunity to learn about the various stages of caregiving, the emotional ups and downs that come with each stage and tips for managing stress and staying well.
Thursday, December 10, 6 pm EST
Click here for registration information.
Quality Care; Quality of Life
March 7 & 8, 2016
Canad Inns Polo Park
Click here for the Dementia Care 2016 poster.
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).
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.
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 table today so you don’t miss out on this gala event.
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 firstname.lastname@example.org
We are currently accepting items for our auctions and balloon pops. To donate an item or gift certificate, contact email@example.com
Click here for more information and to book your table.
Anything for Alzheimer’s
Dementia Today and Tomorrow
Join Comfort Keepers for a fundraising event to support the Alzheimer Society. Learn about dementia and resources available for families affected by this disease.
Saturday, November 7, 10 am to 1 pm
Norberry-Glenlee, Community Centre, 7 Molgat Ave., Winnipeg (map)
Cost: $5 (includes a cold lunch)
Click here for more information or contact Nancy Monk at firstname.lastname@example.org or 204-488-4600.