Robot Duck Takes The Stage - Alzheimer Society of Canada

In The Loop
Fall 2011
Fall 20
Robot Duck Takes The Stage
Carol Berger-Nugent has always loved the excitement of the
Alzheimer Duck Derby. After the birth of her son Alex, she
couldn’t wait to take him to experience all of the
activities including the free Kids Zone and Kids’ Duck
Costume Contest. Carol has attended the Duck Derby every
year; however, there was something this year that made it
extra special for her and her family.
“We decided ahead of time to participate in the Kids Duck
Costume Contest so our costume was ready a month before
the event!” says Carol. “It sat in Alex’s room and everyday
he would ask when we could go to the Duck Derby because
he couldn’t wait to wear it.”
Alex and his Dad made the robot duck costume together
– an idea that Alex came up with on his own. The robot
pieces were made out of recycled materials from around
the house and the yellow duck suit they had from
participating in the contest the previous year.
On September 24, Alex proudly wore his costume to the
Halifax Waterfront and registered for the contest with the
other children. All children 12 years and under are eligible
to enter.
“We saw a lot of great duck costumes, and knew that
judging wasn’t going to be easy,” says Carol. “When they
announced Alex had won first place and $500 towards an
education fund we were so happy. It meant a lot to my
husband and I because we already have an education fund
set up for him, but we can’t always contribute to it every
month like we want to.
In the Loop
Fall 2011
Robot Duck Takes The Stage (continued)
“The Duck Derby is an event for all ages and everyone
can enjoy it.”
-Carol Berger Nugent
Along with the chance to win great prizes, the Duck Derby
raises important funds for families living with Alzheimer’s
disease or other dementias in Nova Scotia.
Plans are underway for the next event but Alex will have to
wait until next year for the Kids Zone and to see 10,000
rubber ducks race!
“The Duck Derby is an event for all ages and everyone can
enjoy it. I’d like to see more families get out to the event,
support this great cause and get creative with their duck
costumes.”
Alex’s grandfather had Alzheimer’s disease and passed
away before he had a chance to meet Alex. Although Alex
doesn’t really understand what the disease is, his parents
want to start educating him now so he can be aware and
practice better brain health at a young age.
“Can we go to the Duck Derby next week?” Alex asked his
parents on the way home from the Duck Derby.
Providing Support to Caregivers
Alzheimer’s disease and
other dementias can
leave those with the
disease and their care
partners feeling isolated.
However, you are not
alone. There are other
people to share the
journey with you.
The Alzheimer Society of
Nova Scotia offers
Family Caregiver
Support Groups. These
groups are there for
people who want to
inform themselves with
current information that
will help improve quality
of life with the disease. It’s a safe
environment where you can learn, laugh, and help
each other through mutual understanding.
Dianne Ardern, a Challenging Behaviour
Resource Consultant with the
Department of Health in Amherst and
Inez Gibbard-Daye, a retired nurse who
volunteers at Willow Lodge in
Tatamagouche, were interviewed about
their experience as Support Group
Facilitators.
What prompted your decision to start
a group in the Tatamagouche area?
There was a need, families wanted to
know about Alzheimer’s disease and
what to do to help family members
with the disease. They needed
support, encouragement to look ahead,
and whether they needed to transition
to long term care. Because of this, we
were approached by Betty Matheson,
the Director of Nursing Care at Willow Lodge, to consider
starting a Caregiver Support Group.
In the Loop
Fall 2011
Providing Support for Caregivers (continued)
What is the purpose or goal of the group?
Exchanging information and supporting each other, sharing
in the journey, ongoing encouragement from each other
and from the facilitators, and education so they don’t have
to go through the journey in isolation. The group
empowers caregivers to advocate for themselves and
family members with the disease. The members
encourage each other to take care of themselves, discuss
coping skills, whether it be through exercise or
something else that gives them joy. The group helps to
navigate the system; find solutions and knows where to go
when support or resources are needed and how to access
them. Having knowledge is power, caregivers are able to
make informed decisions.
What do you feel are the most urgent support needs of
caregivers?
Having someone to take the time to listen, and having
time away from the role of caregiver, even if it is for a brief
period.
They need an avenue to express fears, needs, and hopes.
They feel that other members really care about their well
being. They provide mutual support to one another and
know that they can call upon the facilitator or other
members within the group just to hear another voice.
Do you have guest speakers visit your group?
We have Lawyers, Care Coordinators, ASNS, RTs,
Pharmacists, Nurse Practioners come speak to the group,
and we also wait for the group members to come up with
suggestions. It’s really important to ‘do on to others as you
would have them do on to you’. The heart of good care, of
excellent care really, is to treat others as you want to be
treated.
To get information about organizing a caregiver support
group in your community please contact Kara at
1-800-611-6345 ext.242.
Wolfville Nursing Home Wins Again!
There were many smiling faces on Friday, September 16,
when members of the Wolfville Nursing Home, and their
friends from the community gathered for an afternoon tea.
“Because of you,” began Margaret Coghill, Director of
Recreation, “We have once again won the 2011 Nursing
Home Challenge!” she finished to cheers and claps of joy.
This is the seventh time that the Wolfville Nursing Home has
won a Walk for Memories Nursing Home Challenge.
But Margaret wants everyone to know that it is more than
just the Nursing Home that makes their event a
success year after year.
“It’s the community who
comes together. From
walkers, to manning
registration, to cooking
hamburgers. We are
successful because of
everyone who comes
out.”
“Go out to your community and invite them to take part.
They can volunteer to work the event, or to take a pledge
sheet themselves and push a resident on the day of the
walk.”
Margaret has heard from several people in the community
about the walk. “Businesses and the townspeople
commented on the walkers. This demonstrates an increased
awareness and support for the walk.”
To celebrate this year’s win, the Wolfville Nursing Home held
a celebration tea, inviting all those community members to
say thank you. They included the Wolfville Children’s Centre,
L’Arche Homefires
and Cochranes
Pharmasave.
“ It’s the community who comes
together. From walkers to manning
registration, to cooking
hamburgers. We are successful
because of everyone who comes
out.”
Margaret’s words of
wisdom for other
Nursing Home Challenge
-Margaret Coghill
participants:
We in turn, say
thank you to
Margaret and the
Wolfville Nursing
Home for their
leadership and
support.
Congratulations
once again!
In the Loop
Fall 2011
The Secret Behind Wolfville’s Success:
• There were 160 walkers
• The walk was 2.5km along the main street of Wolfville. A break took place at Cochranes Pharmasave who
supplied refreshments
• The walk ended at the nursing home with a BBQ put
on by Paul MacDonald, Administrator
• The facility’s departments created A-Team’s and had
a fundraising challenge. Their pledge sheets
raised $1700
• 33 businesses and community agencies supported
the walk and auction this year
Thank You Nursing Homes!
The Alzheimer Society of Nova Scotia would like to thank everyone who participated in the 2011 Nursing Home Challenge:
Arbourstone Enhanced Care
MacGillivray Guest Home
Ryan Hall
Northside Guest Home
Bissett Court
Parkstone Enhanced Care
South Cumberland Country Care Centre
Foyer Pere Fiset
Cedarstone Enhanced Care
Truro Mira Care Centre
Windsor Elms Village
Orchard Court
Celtic Court
Parkland at the Lakes
Debert Court
Harbourstone Enhanced Care
Dykeland Lodge
Maplestone Enhanced Care
Gables Lodge
Grandview Manor
Heart of the Valley Long Term Care
In the Loop
Fall 2011
Still Alice Author Speaks to Caregivers
By Kyle Warkentin, Dalhousie University Student
For the aging population,
the thought of dementia
is a double threat; in one
way, seeing your parents
live to old age can be
considered a blessing
but the longer they live,
the greater the odds that
one or the other will be
afflicted with Alzheimer’s
disease or other
dementias like it. Equally
as hard is dealing with the
financial burden that can
be bestowed upon family
members during care of
a family member with Alzheimer’s disease.
On October 20, 2011 author Lisa Genova (“Still Alice”) gave
an inspirational talk about her grandmother who was living
with Alzheimer’s disease and the inspiration for her book.
Following her speech, the talented financial guru, Evelyn
Jacks, shared important financial information to help
families deal with the economic strains of Alzheimer’s
disease.
In Lisa’s book, which everyone who attended the event
received, she takes her grandmother’s experience with
Alzheimer’s disease and creates a fictional setting, in this
case a Harvard University Professor who succumbs to
Alzheimer’s disease. It is a thought provoking and
talented way to portray how quickly and damaging
Alzheimer’s disease can be, if unprepared.
Her Grandmother “didn’t forget us all at once,” Lisa told
the audience. “It happened in spurts, first the daughter,
then the granddaughters, and then absolutely everyone
was forgotten.”
The talk from both Jacks and Genova was a great way to
help those who want to plan for the future, to alleviate
additional stresses and to help cope with what is to come,
if Alzheimer’s disease is to creep into your life.
Amongst the 100 in attendance was an Alzheimer Society
of Nova Scotia Support Group from Musqudouboit
Harbour, who turned their November Support Group
meeting into a field trip.
“I sent an email to our regular support group participants
after I first found out about this special evening from Linda
Bird at the Society. This presentation is on our regularly
scheduled meeting night,” said Angela Ford, Support Group
Facilitator. “Six of us ended up coming in, an hours’ drive,
from Musqudobit Harbour, we had dinner first, making it a
real field trip. We enjoyed the presentation and this could
be the beginning of more in the future.”
A Student Perspective
By Tracy Jesso, Dalhousie University Student
My name is Tracy Jesso and I am a social work student at
Dalhousie University. I am currently doing my placement
at the Alzheimer Society here in Halifax and in doing so, I
have had the privilege to participate in the Family
Caregiver Education Series.
This is an educational six week series that helps give
participants the tools to cope with their role as caregiver.
Each week is broken down to provide specific information
that could be of use to the caregiver; from what
Alzheimer’s disease is, strategies for certain behaviors,
knowledge on how to navigate the health care system
( i.e. when a homecare or a facility is needed), self care and
even some future planning.
From my perspective as a future social worker I learned a
lot from the whole experience. Bringing family caregivers
together for the series does more than just provide
information; it gives people the chance to meet and be
with others who are going through similar situations, to
provide mutual support. Through the discussions, it also
offers emotional support and gives participants a chance
to have their feelings validated. There is something to be
said for going through a trying time and realizing that you
In the Loop
Fall 2011
A Student Perspective (continued)
are not alone.
What I found most valuable was watching participants
grow as they learned and the moments when someone
would gesture to another friend or relative and say
“that’s exactly what my husband does!” The relief and
the excitement of acknowledgement was a pleasure to
witness. Or when someone had an ‘aha’ moment and
really reached a new level of understanding of how the
disease is affecting their family member, learning that
certain behaviors were due to the symptoms of the
disease, and to not let it upset them so much. These
moments made me realize the importance of such
programs. The development of life skills helps to prevent
burn out and reduce anxiety and depression.
Care giving can be rewarding but it can also be
overwhelming at times. It requires lots of support from
the community; support offered by the Alzheimer Society
and the caregiver series.
Memorable Gifts
The holidays
are the
perfect time
for getting
together
with family,
friends and
celebrating
traditions.
They are also
a time for
many people
to make a donation to a charity they are passionate about.
This holiday season, why not make your annual
donation also a gift for a loved one?
Instead of searching the malls for that perfect gift this
holiday season, you can purchase a gift for your loved one
from our Memorable Gifts Campaign.
By purchasing a memorable gift, you will provide
information kits to families living with Alzheimer’s
disease, encourage a caregiver to attend a support group
in their community and fund research in the hope to find
the causes, treatments and a cure for the disease.
Once a gift is purchased, the Alzheimer Society of Nova
Scotia will send out a card on your behalf to the recipient
of your choice.
Your gift can make a difference for families in our
communities.
“My family is so grateful to have the Alzheimer Society of
Nova Scotia who continues to educate us and offer
support services in our community as we care for Dad
and go through the progression of the disease,” says Anne
Hebb, family caregiver for her father John.
There are many families just like Anne’s that need support
now.
You can help a family today.
To purchase a Memorable Gift for your loved one or for
more information please visit www.alzheimer.ca/ns or call
1-800-611-6345.
Tips From the Alzheimer InfoLine
Our Alzheimer InfoLine responds to a variety of questions
and concerns from people with dementia, their partners in
care, family members, and health care providers.
For our first column, we’ll look at one of the most
common questions we hear. “What is the difference
between dementia and Alzheimer’s disease ?”
In this and future In The Loop Issues, we will address one
question or topic that comes to us at the InfoLine.
Dementia is the word we use to describe a group of
symptoms that people might experience. These symptoms
include troubles with memory as well as problems with
In the Loop
Fall 2011
Tips From the Alzheimer InfoLine (continued)
other cognitive (thinking) functions and behaviour, such as
attention, language and problem solving. In order for it to
be considered dementia, it must represent a change from
the person’s previous cognition. The change may have
taken a long time to develop.
Dementia is not a specific disease, just like the symptom
we call pain is not a specific disease. But, we do know that
something causes the pain. In the same way, something
causes dementia. Alzheimer’s disease is the main cause of
dementia. It is the cause of about 60-70% of all dementias.
Other causes of dementia include: Lewy Body Disease,
Frontotemporal disease, Vascualar disease, AIDS,
Parkinson’s disease and many, many others. It is also
important to know that there are conditions that can look
like dementia but are not. Only a doctor or
nurse-practitioner can diagnose dementia.
For further information, or to talk to someone in
confidence about any issues related to dementia, call
1-800-611-6345 and ask for the Alzheimer InfoLine.
YOU, The Fundraiser
Are you one of the several Nova
Scotians who want to help make
a difference in the lives of many
in the province, but are not sure
where to start?
There’s a new blog for that.
Beth Jackson, Coordinator of
Community Giving and Sarah
Lyon, Manager of Fund
Development at the Society
recently launched a new blog
that puts the focus on the
everyday Nova Scotians who
plan and host fundraising
events.
“It’s a great way to profile and
thank the caring individuals,
couples and groups that have
held fundraisers for the Society,”
explains Beth Jackson. “It’s also
a great tool for those who may
be on the fence about how they
can help.”
The blog, which can be found
online at http://youthefundraiser.wordpress.com launched
in late August and is updated
weekly.
“We try to alternate between
profiling and giving ideas and
suggestions. And it’s not just
about how you can help the
Alzheimer Society of Nova
Scotia, it also informs
potential independent
fundraisers on how to work
with a charity they are
passionate about,” says Sarah
Lyon.
From golf tournaments, to
curling bonspiels; birthdays to
weddings; concerts to house
parties, YOU as the fundraiser
means YOU can create your own
event. The Alzheimer Society
can help support any
independent fundraiser with
planning and promotion.
To learn more, contact Beth
or Sarah to discuss your idea,
1-800-611-6345.
YOU the fundraiser in the spotlight
YOU making fundraising easy
Holding a fundraiser doesn’t have to be difficult.
Some people think fundraisers take too much time,
energy and planning. But for the employees at
Intertape Polymer Group in Truro it was an easy
task thanks to Trina Mabey.
Trina is an employee at Intertape Polymer and
decided to organize a book sale as a fundraiser for
the Alzheimer Society of Nova Scotia.
Employees donated their old books and put
them on display for sale in the office for a week.
“It was an easy way to get rid of our old books and
pick up some great new reads,” says Trina. “My
co-workers were also very happy to purchase
new-to-them books because they knew the
proceeds were going to a great cause.”
Thank you Trina and her co-workers for
reminding us how easy fundraising can be.
Something as small as holding a book sale in
your office can make a big difference. Are YOU
interested in holding a fundraiser at your work?
In the Loop
Fall 2011
Alzheimer’s disease ...
it’s more than you think
By Linda Bird, Director of Programs and Services
Alzheimer’s Disease … It’s more than you think. For me,
the title of our 22nd Annual Provincial Alzheimer
Conference was more than appropriate. For two days, I
listened to presentations that caused me to reflect on
what I know about dementia and left me with a richer
understanding and appreciation of the wonderful work
that is happening in dementia care across the province. In
a word, I was energized.
Our conference provides an annual opportunity to bring
together people from across the province who provide
care, to share what we are doing and to learn from one
another. We know the number of persons with dementia is
on the rise, and more than ever we need to work together
as a community and in partnerships to ensure resources
are used most effectively to help provide meaningful
support and care.
One of the common threads weaved throughout the two
days was the vital importance of embracing person
centered care. Mary Schulz, our keynote presenter, shared
things that brought joy to her life: Rembrandt, Handel’s
opera and the silky voice of Andy Williams. As other
speakers took their turn at the podium, they also shared
their wishes and fears that they hoped others would
consider if they weren’t able to personally convey their
own wishes. This drove home the importance of
recognizing and attending to each person individually and
taking the time to find out what they like, don’t like,
and what types of things make them happy or not.
I sincerely hope that all those who attended the
conference were able to have their understanding of
dementia grow, and their thoughts on supporting persons
with the disease and their families expand in creative
ways.
Through the Alzheimer Society of Nova Scotia website, we
are posting some of the presentations from the conference
for educational use. Visit www.alzheimer.ca/ns to see a full
list of available presentations.
If you would like to hear a taped version of Mary Schulz’s
presentation, visit: http://dementiaknowledgebroker.ca/
events/webinar/creating-culture-change-long-term-carehomes-canada-person-centred-approach.
Research Corner
Research brings us one step closer to a world
without dementia. With advances made within the last
15 years, researchers are more hopeful today than ever
before that a breakthrough is around the corner!
In upcoming issues of In The Loop, we will have a regular
column on research. We hope to bring you news about
current research into Alzheimer’s disease and other
dementias, introduce you to some of our excellent
researchers and research students, let you know about
research projects, research facilities and even what
research opportunities are available right here in Nova
Scotia. We will also let you know about some of the
activities of the Alzheimer Society of Nova Scotia’s
Research Committee.
As an introduction, let’s review a bit about research.
What is research? The Oxford Canadian Dictionary
defines research as “a. the systematic investigation
into and the study of materials, sources, etc. in order to
establish facts and reach new conclusions. b. an
endeavour to discover new or collate old facts etc.
by the scientific study of a subject or by a course of
critical investigation.”
So, research is the method we use to try to find out new
things. When we’re talking about Alzheimer’s disease
and other dementias, what we really want to find out are
things like:
• What causes the disease?
• How can we prevent or at least slow down the disease?
• How can we cure the disease?
• How can we improve the quality of life for those
In the Loop
Fall 2011
Research Corner (continued)
living with the disease and their
partners in care?
The Alzheimer Society Research
Program (ASRP), which is supported
by all Alzheimer Societies across
Canada, funds researchers with
awards and grants. ASRP focuses on
two research streams, Biomedical and
Quality of Life. The Biomedical Stream
provides funding for research into
basic biological mechanisms related
to brain changes associated with the
disease, and into the identification
of therapeutic agents to combat the
disease. The Quality of Life stream is
concerned with aspects of the disease
especially pertaining to, for example,
quality of life issues, behavioural and
cognitive changes, environmental
support and caregiving issues.
On a provincial level, The Alzheimer
Society of Nova Scotia awards
the Phyllis Horton Bursary Award
annually to an outstanding student
(undergraduate, graduate,
medical) in Nova Scotia who is
pursuing research in Alzheimer’s
disease or other dementias. The
research may be in any field. Stay
tuned for our call for applications in
the new year.
When we are trying to answer the
questions listed at the beginning of
this article, we use all manner of
methods. We can do research using
in test tubes, with microscopes, with
mice and other lab animals, by doing
drug trials, by searching through data
bases, and in lots of other ways. Some
of these ways include using volunteers
like you.
Your involvement in research is
extremely valuable, and we will be
trying here to bring together
researchers who are looking for
subjects, and those of you who are
potentially willing to participate. If
you are willing to participate in
research, it is important to know that
in Canada, any research with humans
carried out at a university or
university-affiliated hospital is
governed by ethics set out in the
Tri-Council Policy Statement. It sets
out standards and procedures for
conducting safe and ethical research
and informed consent.
To find out more about
Participating in Research or the
Tri-Council Policy Statement go to
http://www.alzheimer.ca/english/
care/ethics-research.htm or call the
InfoLine at 1-800-611-6345.
The 2012 Research Breakfasts are
coming up! Join individuals, physicians,
nursing home employees and
businesses for an education on current
research in Alzheimer’s disease or other
dementias.
The Breakfasts profile local
researchers/research in our
communities while raising important
funds for research. All proceeds from
the Research Breakfasts go directly
towards research in all aspects of
Alzheimer’s disease or other
dementias.
Mark Your Calendars:
Sydney Research Breakfast is on
January 25, 2012 at the Membertou
Trade & Convention Centre
Halifax Research Breakfast is on
January 26, 2012 at the Westin Nova
Scotian
For more details or to purchase tickets
for the Research Breakfasts please visit
www.alzheimer.ca/ns or call
1-800-611-6345
Advocacy Corner
It is estimated that over 15,000 people in Nova Scotia
currently live with Alzheimer’s disease or other
dementias and this number is expected to increase with
the aging population and increased life expectancy.
Caregivers are often isolated and alone and they don’t
know how to get residential care or respite care when it’s
needed. It’s not enough to have services; people need to
be matched to the right services.
Alzheimer’s disease affects not only the person diagnosed,
but their family members, friends and caregivers.
In 2008, an estimated 7.2 million hours of informal care
were provided for people with dementia in Nova Scotia.
This is expected to grow to 20 million hours in 2038.
In upcoming issues of In the Loop, we will have a regular
column on advocacy. We hope to bring you the latest news
on advocacy activities taking place not only in Nova Scotia,
but across Canada.
In the Loop
Fall 2011
Creative Corner
Our Creative Corner is a place where people
affected by Alzheimer’s disease or other
dementias can express their experiences about the
disease through creative writing and artwork.
We invite you to submit a piece to our creative
corner. It can be a poem, short story, essay, journal
writing, song or other form of creative writing.
Please keep your entries to a maximum of 300 words.
Send your piece of writing in the body of an e-mail
to [email protected]
Please note that the copyright for these pieces
belongs to the people who created them. They may not
be reproduced without their permission. If you
would like to reproduce a piece, please
contact us at [email protected] and we will
forward your request to the creator of the piece.
Colours of Life
A poem by Carol Wall
Carnations are white
Alzheimer’s is a fight
Roses are pink
I need you to help me think
Violets are blue
Always remember I love you
Daises are yellow
Come lay with me on my pillow
Orange is bright
You are the light of my life
Tulips are red
Come sit with me on my bed
The grass is green
I know you will help me to be seen
Black is where I seem to be
Make sure you return to visit me
Colours of life
Are you the Angel in my life ?
As your loved one I will be there for your fight
Until the last day of your life
With no fear
You know I will be here
For the quality of my life and the dignity and respect
I know in my heart I have done my best
Buttterflies are free
And now I am where I should be
The Society recieves no core government funding and relies totally on the support of the community. Should you wish to help make a difference in the lives of Nova Scotians impacted by Alzheimer’s, please contact us today to make a donation, or to find out about the many other ways through which you can help.
Alzheimer Society of Nova Scotia
6009 Quinpool Road, Suite 300, Halifax, NS B3K 5J7
(902) 422-7961 or 1-800-611-6345 (outside Metro)
www.alzheimer.ns.ca