Bulletin for Caregivers Spring 2014
By Elizabeth Smayda
I approached slowly and said a gentle “Hi”, as I knelt down beside the chair.
“Hi,” she answered softly. Her eyes searching mine looking for some sign of recognition. It was our first scheduled meeting together. She had recently been admitted to residential care when it was determined that Alzheimer’s had progressed to a stage that made it impossible for her to live alone. She sat poised, with her hands folded on her lap. Her eyes held a twinkle, revealing a not yet forgotten sense of joy. Although unsure of her present situation, she appeared warm and welcoming. Her name was Effie.
Guide to Taxes (p. 2)
Balancing Paid Work and Caregiving (p. 3)
Canadian Dementia
Conference (p. 3)
Wandering (p. 4)
G8 Summit (p. 5)
Tele-Support Group
(p. 5)
Self-Care Tip (p. 6)
New Guide for
Caregivers (p. 6)
Are Your Emotions
‘Contagious’? (p. 7)
Tele-Workshop on
Research (p. 7)
How to Contribute and Subscribe (p. 8)
Although many of her memories were fading, as the Alzheimer’s peeled them away, lots from her past still survived. As our connection grew stronger, and trust evolved, she shared many of these memories with me.
“You know, I have travelled the world. I really did!” she would state with a look full of pride lighting up her eyes.
She talked about her desire to live an independent life and how she had travelled instead of following more traditional roles.
It seemed to me that the joy she had discovered from following her own path was still alive even though memories were dimming. I wanted to find ways to keep that spark ignited.
As time progressed, she began to experience more and more difficulty recalling her past. Her niece advised me that Effie had created many photo albums. I was overjoyed when a large number of albums appeared in her room. There were so many and they were created with such care.
Every picture was labeled. Family albums were dated, and had the name of every person and place. There were many travel albums, one for each trip, all neatly typed as well.
As her past faded away, these books served as her memory keepers.
They were there to assist. Her eyes would open wide with awe and her
Continued on page 2… www.alzheimerbc.org
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…Continued from page 1 finger would touch each precious memory in her albums. She would turn to me with her eyes wide and with a look of delight, she would state, “Wow, did I do that – Really?” Then she would look down at the book again to make sure she was not making a mistake. Sometimes when she looked up again a tear would be present and she would reach for my hand.
Her memory keepers were made by her at another time. Almost as if a wise, caring part of her knew that someday they would be needed. That one day they may serve to keep her spirit alive, by reminding her of who she really was and all she had done.
Sometimes I would find her sitting in her chair looking around at the other residents; eyes searching and lips pressed with determination, as if she was trying so hard to wake up from a deep, foggy sleep. It was at these times that I would reach for one of her memory keepers knowing that they could navigate and direct her to a familiar place.
Then the day came when the power found in the memory keepers began to fade. “Who are these people?” she asked, looking up from a photo of her family. One day she looked at a picture of herself on a trip, and then looked again. Touching the picture slowly, she turned and looked at me with a question in her eyes. It was at this time that words were becoming harder for her to find, as well.
Eventually, I found her just holding one of her albums. “Hi,” I said leaning down beside her wheelchair. I looked at the album in her arms. Her memory keepers were still able to bring her comfort. It was obvious to me that the comfort they brought her was still remembered and would be the last part to be forgotten.
The moon was full and bright as it lit up the little room. I sat on a chair close to her bed with my head on a pillow. As my hand rested on her shoulder, I noticed her breathing growing weaker. How privileged I had been to walk beside Effie during the final years of her journey.
I waited with her now until her niece arrived from the Eastern part of Canada. The room seemed to be filled with peace and quiet sacredness.
She slept peacefully and as I moved my hand it seemed like she gently smiled. I wondered if maybe there is one thing that is never, ever forgotten and maybe that one thing is love.
Elizabeth is a professional caregiver living in Vancouver.
She has been published previously in two editions of Chicken Soup for the Soul .
The Alzheimer Society of B.C. has updated its Guide to Income Tax and Benefits for the 2013 tax year.
This handout provides some basic tips that may be particularly useful for people with dementia and their families. It also highlights new tax changes that came into effect in the 2013 tax year.
To download this document, visit www.alzheimerbc.org/pdf/Living-With-Dementia/Guide-to-Income-Taxand-Benefits-(2014).aspx
or contact your local Alzheimer Resource Centre to request a copy. www.alzheimerbc.org
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The Alzheimer Society of B.C. advocates with government, health authorities and others to improve the lives of families living with dementia. We promote improvements to the system of care, for recognition of the role of caregivers and for the development of a provincial dementia plan for B.C. In order to advocate effectively we need to hear from you so that we know what families need.
We would like to learn more about your caregiving situation, what kinds of supports you receive and the impact of your caregiving role on your paid work and financial future.
There are two ways you can help us inform a report on the social and legal policy issues that are of concern to caregivers:
Fill out a five minute survey about gender, work and caregiving. All caregivers are invited to participate in the survey whether you are still employed or not. Your responses to the survey will remain anonymous.
If you would like to participate please visit: https://www.surveymonkey.com/s/caregiverrealities .
Are you currently employed or recently retired and willing to share your experiences caring for a person living with dementia? If so we would like you to participate in an audio-recorded interview. The interview will take place with Gloria Puurveen, a contracted researcher with the Alzheimer Society of B.C., at a place that is convenient to you (over the phone or in-person). It will take about one hour of your time.
If you are interested in learning more or would like to participate in either part of this study, please contact Rebecca Morris at the Alzheimer Society of B.C. Provincial Office at rmorris@alzheimerbc.org
or 604-742-4939 (toll-free 1-800-667-3742, extension 4939).
This past fall, Vancouver hosted the 7 th
Canadian Conference on Dementia. This national conference brings together almost 500 dementia experts from across Canada and around the globe for three days of dialogue and information sharing. Presenters included Jim Mann, Alzheimer Society of B.C. Board member and person with dementia, B.C. caregiver Gary Grais, and many B.C. researchers and health care professionals. The Alzheimer Society of B.C. also hosted a donor breakfast which featured presentations by leading researchers in the field.
A summary of the conference can be found at the following link: http://alzheimersocietyblog.ca/2013/12/quality-of-life-research-takes-centre-stage-at-the-2013canadian-conference-on-dementia/ www.alzheimerbc.org
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The term “wandering” refers to a variety of behaviours that may result in someone becoming lost and having their safety at risk. Changes in the brain can cause a person with
Alzheimer’s disease or another dementia to want to move about and to become confused or disoriented, even in familiar places.
Wandering can be stressful for the entire family. Whether or not it is a concern for you or your family right now, it is a good idea to take proactive steps to understand wandering and reduce the risk of a wandering incident.
Common reasons why people with dementia may wander include:
Being agitated or over-stimulated.
Believing they need to go to work.
Not recognizing where they live and wanting to go somewhere that seems more familiar.
It is important to remember that no one thing can ensure the safety of a person with dementia . Instead, the Alzheimer Society of B.C. recommends considering multiple strategies that promote safety while honouring the need of the person with dementia to move.
Some possible strategies include:
Relocating or adding doorlocks above eye level.
Covering doors with wall hangings.
Telling neighbours so they can help recognize if the person with dementia appears disoriented.
Providing a safe area for pacing (e.g., fenced outdoor garden).
Removing objects that might encourage wandering (e.g., coat, hat, purse).
The Alzheimer Society of B.C. can assist caregivers and people with dementia to explore ways to minimize the risk of wandering and to be prepared if wandering does occur. We offer a Wandering Package to help families be proactive and learn more about these strategies.
This package includes information about wandering, an identification kit and tips for police.
To receive a Wandering Package or learn more, contact your local Alzheimer Resource
Centre or visit our website at www.alzheimerbc.org/wandering.aspx
.
The Alzheimer Society of Canada recently partnered with the Canadian MedicAlert Foundation to improve the Safely Home program. MedicAlert
®
Safely Home
®
is a new nationwide program designed to help identify a person who is lost and assist in a safe return home. Members receive an engraved identification, which allows police and emergency responders to quickly identify the person who has wandered and bring the family back together.
For information about the new program, please contact MedicAlert
®
Safely Home
®
staff at 1-855-581-
3794 or visit www.alzheimer.ca/en/Living-with-dementia/Day-to-day-living/Safety/Safely-Home . www.alzheimerbc.org
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This past December and for the first time in its history, the Group of Eight (G8) held a summit specifically about dementia. The participating countries including Canada committed to work together to address the growing problem of dementia through increased research, innovation and partnerships.
Health ministers from all eight countries released a Declaration and Communique, outlining twelve commitments including:
Trying to find a cure or other disease-modifying therapy by 2025.
Significantly increasing the amount of funding for dementia research.
Developing a coordinated international research action plan.
Increasing the number of people involved in clinical trials and studies on dementia.
Appointing a World Dementia Envoy. In February, this position was filled and the envoy plans to create a World Dementia Council to help raise funds for dementia research.
To help keep up the momentum, Canada will partner with France to host a forum in Ottawa this year. Other countries also committed to host similar events, and the G8 will meet again in the U.S. in February 2015 to review the progress made.
To read the G8 Dementia Summit Declaration and Communique and keep up with new developments, visit dementiachallenge.dh.gov.uk
.
Just before the G8 Dementia Summit, Alzheimer’s Disease International released a new report titled The Global Impact of Dementia 2013-2050 .
This report includes updated estimates of the number of people with dementia and associated costs now and in the future. For more information, and to read this report, visit www.alz.co.uk/research/G8-policy-brief .
If you can’t come to us, we want to bring support to you. The Alzheimer Society of B.C. now offers a free telesupport group for caregivers of a family member with Alzheimer’s disease or another dementia who is living at home.
The sessions are designed specifically for caregivers who live in B.C. or the Yukon who are unable to attend support groups in person due to location, disability or other reasons.
Meetings are conducted over the phone on the first and third Fridays of each month from 2 to 3 p.m.
Each call includes up to eight family caregivers and is led by an experienced support group facilitator.
Participants only need a standard telephone. They call a toll-free number at the scheduled time and will be able to hear and speak with one another at all times during the meetings.
For more information, please contact Jan Robson at the Alzheimer Society of B.C. Provincial Office at jrobson@alzheimerbc.org
or 604-742-4935 (toll-free 1-800-667-3742, extension 4935). www.alzheimerbc.org
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Spend some quality time with yourself.
A lot of your time and energy are dedicated to taking care of someone else. Make sure you save some of this time and energy for self-care. In order to replenish one’s energy, caregivers and others who are under a lot of stress need to spend more time taking care of themselves than the average person.
When was the last time you treated yourself? Do something just for you and treat yourself on a regular basis. Make time every day to do something you enjoy, or at the very least, take a break from your caregiving duties. Treat yourself in a special way every week. This is good for you, and the person with dementia will also benefit from it.
Some suggestions:
Take a long bubble bath. Treat yourself to a massage, pedicure…
Go for a walk, by yourself or with a friend. Go out to a coffee shop and relax.
Participate in your favourite hobby.
Join a club (social, sport, craft…).
Buy yourself some flowers.
Read a good book.
Go to your favourite restaurant.
Reconnect with friends that are dear to you.
Visit the library, art gallery or museum.
Spend some time with your grandchildren.
Play tourist in your own town.
Go shopping, just for fun.
Enrol in a class at the local community centre or college.
Have an evening out (movie, theatre, a drink with friends…).
©
The By Us For Us
©
Guides are produced by the Murray Alzheimer Research and
Education Program (MAREP) at the University of Waterloo. These guides are designed to equip persons impacted by dementia with the necessary tools to enhance their well-being and manage daily challenges. What makes these guides particularly useful is that they are created by persons with dementia and/or caregivers, for persons with dementia and/or caregivers.
The second By Us For Us Guide
©
for caregivers, titled Role, Health, and
Well-Being has recently been released. This guide includes valuable information about:
The many roles that caregivers take on and the potential impact on you and the person with dementia.
Tips to help you with understanding, supporting, and maintaining your health.
Effective strategies for managing and coping with difficult and challenging experiences.
Positive insights and experiences that other caregivers have gained along the journey.
The new guide is available on the MAREP website at www.marep.uwaterloo.ca
(click on “Education and knowledge exchange” and choose “Products and education tools”). Or call 1-519-888-4567. www.alzheimerbc.org
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Did you know that people with dementia tend to mirror the emotions of people around them?
This transfer of emotions, known as emotional contagion, is something that we all do. It is a basic form of empathy that enables people to share feelings.
But this sensitivity to the emotions of others is higher in peopl e with Alzheimer’s disease and mild cognitive impairment, according to a study published in the Proceedings of the National
Academy of Sciences in June 2013.
This means that if you are upset or anxious, the person you care for may copy how you are feeling. However, this works both ways. If you are happy or relaxed, the person with dementia may mimic these positive emotions.
So if you let your positive emotions show, your family member with dementia may feel good too. Talk about a win-win situation!
Tuesday, May 27, 2014, 7 p.m. (Pacific)
With special guest speaker Dr. Dean Foti
Dr. Foti will explain in plain language the state of dementia research, including research happening at the Univerisity of British Columbia (UBC) and implications for people living with dementia. Following the presentation, Dr. Foti will answer questions about brain research.
Dr. Foti completed medical school training at McGill University, residency in Neurology at UBC, and two years of fellowship training in Behavioural Neurology at UCLA. Dr. Foti holds the title of Clinical
Assistant Professor at UBC. His main areas of interest are dementia and traumatic brain injury, and he is a consultant neurologist at the Clinic for Alzheimer’s Disease and Related Disorders at UBC Hospital where he also participates in clinical trials and research.
To participate in this free, one-hour tele-workshop:
Phone: 1-866-994-7745 (Participant pass code: 1122333)
Or Website and Phone: momentum.adobeconnect.com/alzheimerbc (Enter as a guest)
What are the tele-workshops?
Tele-workshops are educational sessions on various topics related to dementia and caregiving. They are open to everyone, but aimed at family caregivers and other family members. You can participate by listening on the phone, or through the internet to see the PowerPoint presentation and see and hear the presenters. Pre-registration is not required.
To learn more about tele-workshops, view previous sessions and receive notifications about upcoming sessions, visit www.alzheimerbc.org/tele-workshops.aspx
. www.alzheimerbc.org
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The Alzheimer Society of B.C. also publishes Insight , a bulletin for and by people with dementia. To subscribe:
Visit our website at www.alzheimerbc.org/bulletins.aspx
Call 604-681-6530
(toll-free 1-800-667-3742)
E-mail Insight@alzheimerbc.org
1-800-936-6033
(Lower Mainland 604-681-8651) supportline@alzheimerbc.org
Monday to Friday, 9 a.m. to 4 p.m.
A confidential province-wide support and information service for anyone with questions about dementia, including people with dementia, their caregivers, family and friends, professionals, and the general public.
Do you have a topic you would like to see covered in In Touch ?
Do you have content you would like to publish in In Touch (personal stories, photos, original poems, etc.)?
E-mail In-Touch@alzheimerbc.org
Call Anthony at 604-742-4933
(toll-free 1-800-667-3742)
Mail to the address below with attention to In Touch
All submissions will be considered based on space and theme. Please provide your name, mailing address, phone number and/or e-mail address if you would like to be contacted.
Would you like to subscribe to receive your own copy of In Touch in the mail or by e-mail at no charge?
If you haven’t already done so:
Visit our website at www.alzheimerbc.org/bulletins.aspx
Call 604-681-6530
(toll-free 1-800-667-3742)
Our Vision
Our ultimate vision is to create a world without Alzheimer’s disease and other dementias.
Our Mission
The Alzheimer Society of B.C. exists to alleviate the personal and social consequences of Alzheimer’s disease and other dementias, to promote public awareness and to search for the causes and the cures.
E-mail In-Touch@alzheimerbc.org
In Touch is published by:
#300 - 828 West 8th Avenue
Vancouver, B.C. V5Z 1E2
Phone: 604-681-6530
Toll-free: 1-800-667-3742
Fax: 604-669-6907
E-mail: info@alzheimerbc.org
Website: www.alzheimerbc.org
In Touch is produced by the Alzheimer Society of B.C. Programs and Services Department. Articles cannot be reproduced without written permission.
www.alzheimerbc.org
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