In This Issue
A Family Bands Together
Being Your Own Best Advocate
Learning How Couples Cope in Their Dementia Journey
Smoking Increases Risk of Dementia
Researching Dignified Care: A Call for Participants
Caregiving Tips: Emergency Preparedness
Upcoming Education
Upcoming Events
Canada Needs a National Dementia Plan –
We URGENTLY Need Your Help!
This summer the Honourable Greg Selinger will be attending a meeting in Charlottetown with other premiers from the provinces and territories. This group, known as the Council of the Federation, comes together to discuss pressing issues that are important to all Canadians. While the Council expressed a commitment to addressing dementia last year, they have not yet publicly supported the creation of a coordinated, national dementia plan.
Ask your premier to support the creation of a national dementia plan today.
Click here for more information.
A Family Bands Together
It was the coldest July 13th since 1884 but you couldn’t tell in the Hurd-Carter household.
The home was filled with kids, grandkids and other family members as they came together to celebrate the summer and spend time with the man the grandchildren affectionately call “Papa.”
“Sunday was a fabulous day. We had a family barbecue and Tom was able to stay up all day. He even watched two and a half movies,” says Cathy Hurd.
When her husband, Tom “Boz” Carter was diagnosed with frontal-temporal dementia, the family found themselves at a crossroads. Rather than let themselves be consumed by a sense of despair, they decided to be proactive and make the best of the situation.
“There’s too much loss. So we (the family) gathered together and decided that we’re going to celebrate the gains. And there are gains. We’ve all learned to appreciate and celebrate each day that we have together,” explains Cathy.
It’s been an adjustment, of course, but one they are tackling together. Perhaps the most encouraging aspect has been the way the grandchildren have reacted to everything. They have all learned that they have to adjust to Tom’s needs, and they do so with open hearts. “It’s amazing to watch how tuned in they are to his needs,” beams Cathy.
Instead of visiting in large groups, they now come over in smaller numbers. This gives them an opportunity to connect with their grandfather in their own way. The family’s love of sport has been a good way for them to keep connected. Whether it’s through attending football or baseball practice, or finding a hockey game to watch on TV, the grandkids relish the connections they still have with their Papa.
To help express how they feel about their Papa’s dementia, some of the grandkids (along with their mother) made a short story book about Tom. It’s filled with photos and notes from each of the grandkids about their understanding of the disease and how it has changed their lives. The love and bond the family has is evident from the first page.
It’s easy to see how the family has banded together. Cathy exudes a positive attitude towards the situation and her positivity has a great effect on those around her. Days like July 13th are a good example of how her attitude has been embraced. “We’ve learned to grab these moments and ride the wave,” she says.
Despite the hardship and pain that accompanies dementia, love and a sense of community can go a long way in supporting those affected by the disease.
And as the last line of their children’s book proves, there are some things that can never be taken away: “No matter what happens, or how much he changes, we love our Papa and always will.”
The ebook family project can be found here.
Being Your Own Best Advocate
Speaking up and raising your voice can be a daunting task. Yet it’s a situation that countless family caregivers find themselves in when caring for someone with dementia.
Being an advocate is a skill that involves problem solving, lots of communication, negotiation and often persistence. Whether it’s dealing with doctors or work or friends, it’s important for a caregiver to become an advocate for both the person with dementia and themselves. The good news is that it’s a skill that can be learned, and the Alzheimer Society is here to help.
“Advocacy is speaking up in support of an idea or an action. Family caregivers of people with dementia find themselves doing this more and more as dementia progresses in the person they assist. For many, this role is new territory,” says Norma Kirkby, Program Director at the Alzheimer Society of Manitoba.
To help people develop their skills as an advocate, the Alzheimer Society prepared a series of factsheets that cover a range of information and answer common questions a family caregiver may have. “We’ve tried to answer a number of things, such as: How do I decide what a person might want me to request on their behalf if we have never discussed that specific issue? Who do I take particular concerns to? When things do not go well, how should I negotiate to get to the best solution that can be accepted?” says Norma.
In addition, the factsheets list the differences between various common advocacy roles (including specifying which ones need legal documents prepared, such as a power of attorney). They also describe how to get organized and approach various advocacy situations.
“Each advocacy factsheet includes a story or illustration of the advocacy skill described. We have tried to help the reader see the skill in action,” emphasizes Norma.
The factsheets also point out that it’s a good idea for a caregiver to recognize when they need help. Sometimes it’s valuable to reach out and have someone else assist with a situation.
It’s important for family caregivers to take the time to read through these factsheets. An advocate can empower themselves with education. “Knowledge is power” is a proverb for a reason; being prepared is one of the best things a caregiver can do to become an effective advocate.
For those who want to learn more, or are interested in developing their advocacy skills, the factsheets can be found on our website here.
The Alzheimer Society thanks the Women’s Endowment Fund of the Jewish Foundation of Manitoba for its support of the Advocacy Skills for Family Caregivers project.
Learning How Couples Cope in their Dementia Journey
Most couples, whether they have been together for five or 50 years, develop their own unique goals, methods of communication and strategies for coping with conflict and problems. The way the pair interacts as a couple throughout their relationship will most definitely have an impact on how they manage their lives if one of the partners is diagnosed with dementia.
This is a topic of great interest for Terresa (Terri) Miller, a graduate student in Psychiatric Nursing in the Faculty of Health Studies at Brandon University. A recent recipient of the Alzheimer Society of Manitoba’s Graduate Student Fellowship Research Award, Terri is working on a project called Exploring Couplehood: When One’s Spouse has been Diagnosed with Alzheimer’s Disease and Resides in Long Term Care.
“If we can understand the experiences of couples in this situation, service providers and care partners will be better able to appropriately and accurately meet their needs,” she says.
Terri previously worked with Frances Racher, Research Affiliate at both Brandon University and the University of Manitoba, on a project that examined the experiences of couples living in the community when one of the partners had dementia. As the journey for any couple in this situation involves movement through several stages, the two researchers saw the importance of investigating the next step by asking couples to share their stories about the transition that occurs when the partner with dementia goes into personal care.
The Impact of the Couple’s Relationship
The earlier study brought to light that, while dementia has an impact on the couple’s relationship, it is also true that the couple’s relationship has an impact on how the partners cope with the progress of the disease. For example, one caregiving spouse told Terri that, throughout their marriage, she and her husband had learned to “pick their battles.” As part of their repertoire of interaction methods, this strategy helped the wife to manage when her husband’s behaviour started to change. She used her ability to be patient, focussing on her husband’s happiness rather than worrying about towels being put in the wrong place.
“To this caregiver, happiness was more important than being right, and unless her husband’s actions were dangerous, she didn’t worry about little things,” says Terri. She acknowledges, though, that other couples may not be as resilient; their usual ways of interaction may hinder their ability to react creatively to their situation.
Terri’s current study will ask couples about the strengths in their relationships and how these help them with the transition to personal care. It will also investigate the unmet needs for those couples who are finding it difficult to navigate effectively in their circumstances.
The information collected in the study will help health care professionals to understand the experiences of couples when one partner moves to long term care. What are the couple’s goals, challenges, joys and disappointments? Every couple is different, and learning what is helpful – and not so helpful – to them in their journeys will assist in the fine tuning of programs and services.
The goal is to have enough of the best kinds of services available to meet the many different needs of couples. “We want to be able to match the service to the couple, rather than the couple to the service,” says Terri. With the help of the couples willing to share their stories during the course of her study, that goal may soon become a reality.
Smoking Increases Risk of Dementia
A comprehensive literature review conducted by the World Health Organization (WHO) shows evidence that tobacco smoking and exposure to second-hand smoke increases the risk of dementia. The more a person smokes or becomes exposed to tobacco smoke, the higher the risk for the development of dementia. The review states that an estimated 14 percent of Alzheimer’s disease cases are potentially attributable to smoking and that people currently smoking have a
45 percent higher risk of developing dementia than non-smokers. Identified factors that link tobacco smoke to dementia include the harmful cardiovascular, oxidative and genetic effects of smoking.
This WHO report strengthens the view that lifestyle modification plays an important role in lowering the risk of dementia. Quitting smoking, even later in life, can lower the risk of dementia. The WHO recommends that governments take action to discourage people from smoking, that smokers choose to quit and that non-smokers actively avoid second-hand smoke. These actions would produce significant benefits for everyone.
For more detailed information on this literature review, visit alz.co.uk/news/smoking-increases-risk-of-dementia
Researching Dignified Care: A Call for Participants
It is important to see a person with dementia as the person they always were and not change how you treat them because of their diagnosis. This way, they will feel respected and worthy of respect, despite what may be happening because of their illness.
The research study, The TIME Questionnaire: Personhood and Residence Living in Nursing Homes being conducted by Dr. Harvey Chochinov, Dr. Genevieve Thompson, Dr. Susan McClement and Jingyan (Linda) Pan aims to examine dignified care within the personal care home environment.
The researchers have designed a questionnaire that will help health care staff to better know the person with dementia in order to help them provide the best care possible. “It is so important for everyone to feel known for who they are and what is important to them, not for the disease they have,” says Dr. Thompson.
The study will assess the TIME questionnaire. “Our hope is that the findings from this study will demonstrate that, by using the TIME, health care providers have a deeper understanding of the older adults they are caring for and, in turn, are better able to connect with them in more meaningfully ways. We also want residents to reflect on these questions so that they themselves feel more valued and respected,” says Dr. Thompson, who is currently looking for caregivers to participate in this study.
If you choose to become a participant, you will be asked to answer the TIME questionnaire based on what you feel comfortable sharing. Afterwards, you will discuss the summary of your TIME questionnaire and your thoughts about the importance of this knowledge for health care providers. The researchers will also ask you to reflect on ways the summary might influence how health care staff might better care for a person with dementia.
If you are interested in participating, please contact the research team at:
The TIME Research Team
University of Manitoba
Faculty of Nursing & Faculty of Medicine
204-599-7253
Panj345@myumanitoba.ca
Caregiving Tips
Emergency Preparedness
Emergency plans better equip people to respond to unforeseen events, such as fire, floods or storms. These situations can have a significant impact on a person with dementia, but planning ahead can minimize discomfort and ensure safety.
The following are steps to take to plan for an emergency:
- Make a list that includes contact information for family or friends, a health provider who can assess your medical needs and the local emergency service team who can assist to keep you and your home safe and secure.
- Prepare an emergency kit. Include the following:
- Things that must be checked and re-stocked as needed:
- Medications
- Drinking water
- Non-perishable food
- Things that must be checked and updated as needed:
- E.R.I.K. Kit
- List of contact persons
- Copies of identification items
- Copies of legal, financial and medical documents
- Set of clothes
- Incontinence products; comfort items
- Flashlights, batteries and a first aid kit
- Things that must be checked and re-stocked as needed:
- Have an evacuation plan. Consider the following:
- Things to take, such as emergency kit, list of contact information.
- Get yourself and the person with dementia to a safe place. Do not leave the person alone.
- Inform others about your evacuation. Call family, friends or local police.
- Obtain medical or assistive devices needed by the person with dementia from the nearest
pharmacy or hospital.
Emergency situations can be stressful and confusing. Being calm and in control of the situation will help you to execute your plan and minimize the anxiety of the person you care for. Being prepared is an important step to safety when an emergency arises.
Upcoming Education
Virtual Dementia Tour
Come for a virtual dementia tour as part of a Coffee Break® event.
Thursday, September 11, 10 am to 12 pm
Dugald Library, 206 Dugald Road, Dugald (map)
For more information call 204-268-4752
Living with Alzheimer’s Disease or Other Dementias (Workshop)
A day-long workshop providing valuable information for those who are caring
for a person with dementia.
Saturday, September 13, 9 am to 3:30 pm
Swan Valley Health Centre, Swan River
Click here for more information
The Realities of Dementia: “I’m Still Here”
A DVD presentation on the impacts of a dementia diagnosis on people,
their family and friends.
Wednesday, September 24, 7 to 8:30 pm
St. Joseph’s Retirement Residence, 1149 Leila Avenue, Winnipeg (map)
Click here to register and for more information
Dementia…Answers You Need
Wednesday, September 24, 6:30 pm
Dugald Library, 206 Dugald Road, Dugald (map)
For more information call 204-268-4752
Living with Alzheimer’s Disease or Other Dementias (Workshop)
A day-long workshop providing valuable information for those who are caring
for a person with dementia.
Saturday, September 27, 9 am to 4 pm
Revera – The Wellington, 3161 Grant Avenue, Winnipeg (map)
Click here for more information
First Link: A Referral Program Connecting Families to
Support and Services Through Their Health Care Providers
Thursday, October 16, 7 to 8:30 pm
The Westhaven, 3033 Portage Avenue, Winnipeg (map)
For more information, call 204-943-6622 ext. 203
Telehealth Sessions (for regional communities only):
The Alzheimer Society offers Family Education for those experiencing dementia in regional communities across the province through the video technology of MBTelehealth. Join us from 6:30 to 8 pm on the following dates:
Tuesday, October 7: The Impact of Dementia in Canada and the Warning Signs we all Need to Know
Tuesday, October 14: I’m Still Here!
Tuesday, October 21: Planning for Your Future
Click here for more information and a list of Telehealth locations
Online registration coming soon.
Experiencing Dementia
An eight-week classroom program uniting families and community members with individuals
who are experiencing the early stages of dementia.
Thursdays, October 9 to November 27, 10 am to 11:30 am
For more information, contact the Client Services Coordinator at 204-943-6622, ext. 229
Act On It! Ideas for Keeping a Healthy Brain
It’s never too soon or too late to make changes to improve or maintain your brain health!
Wednesday, October 8, 1:30 to 2:30 pm
Corydon Community Centre, 1370 Grosvenor Ave., Winnipeg (map)
Click here for poster
Care4u: A Conference for Family and Friends
Caring for a Person with Dementia
Saturday, November 1, 9 am to 3:30 pm
Canadian Mennonite University, 500 Shaftesbury Blvd., Winnipeg (map)
Click here to register and for more information
Meaningful Moments:
Maximizing Opportunities to Share Quality Time Together
Wednesday, November 19, 7 to 8:30 pm
The Parkway Retirement Community, 85 Paget Street, Winnipeg (map)
For more information, call 204-943-6622 ext. 203
Upcoming Events
BBQ in the Park
Join Gen Lambert and friends to raise money
for the Alzheimer Society.
Saturday, August 9, 11 am to 1 pm
St. Vital Park, Winnipeg, Picnic Space #1 (behind the sports
fields as you exit the park)
Click here for more information and to donate
We Care 30th Anniversary BBQ
Join We Care Home Health Services as they celebrate their 30th anniversary
and raise money for the Alzheimer Society of Manitoba.
Thursday, August 14, 11:30 am to 1:30 pm
Rideau Park, Brandon
Click here for more information and to donate
Brandon Motorcycle Poker Derby
Rev your engines and support the Alzheimer Society. Join us for the 19th Annual Motorcycle Poker Derby!
Saturday, August 16, 9 am to 7 pm
Brandon
Click here to register or for more information or contact mloewen@alzheimer.mb.ca
Selkirk Wild Walleye Fishing Derby
Everyone is invited to join host Dan Sernyk for a walleye and sauger fishing derby to raise money for the Alzheimer Society of Manitoba. Come one and all!
Saturday, September 20, 8 am to 4 pm
Out of Selkirk Park on the Red River
Click here for more information
Make Your Coffee Count!
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. Participants at these events make a donation in exchange for a cup of coffee. Click here for more information.