Alzheimer Society Durham AGM - Alzheimer Society of Canada

Summer 2011
Staying C nnected
A
Newsletter
from
Alzheimer
Society
of
Durham
Region
Alzheimer Society Durham AGM
Join us on Monday June 27, 2011 - 6:30 pm
at the Oshawa Shrine Club
Featuring guest speaker, humourist
William Thomas
³Where there¶s humour there¶s hope´
Whether we are living with dementia, supporting someone as a partner
in care, or providing care to others, resilience is a quality that can help
us cope in stressful circumstances. Humour and laughter help us to
nurture resilience, and William Thomas is just the man to get us
laughing! He is known as a hysterically funny speaker who ³has an
incredible flair for finding humour in the simplicities of everyday life.´ In
his book Margaret and Me he chronicled his experiences as a
caregiver who tackled the question: ³Can a 91 year old woman and her
middle aged son live together in harmony?´ Join us to find out! Light
refreshments will be served. Pre-registration by phone 905-576-2567
or email at info@alzheimerdurham.com is requested.
Our Volunteer recognition will also take place at the AGM
In This Issue
Education
Christine Bryden¶s
presentation
Special Events
Chocolate Lovers¶ Success
Family Support
Stigma
Support Group Listing
Meeting dates
How to contact us
5th ANNUAL DURHAM NORTH
Forget Me Not Walk
Join us on Sunday October 16th for our 5th Annual
Durham North Forget Me Not Walk. This year¶s
pledged-based Fall Walk will be held once again at
Wooden Sticks and Countryside Preserve in
Uxbridge. Please call the office at 905-576-2567 or 1888-301-1106 for walk information and corporate
sponsorship opportunities.
EDUCATION
Page 2
Rethinking Our Approach to Alzheimer¶s
Regular readers of Staying Connected may recall our excitement last spring when Durham Region
hosted our first A Changing Melody forum, an innovative learning and sharing forum for people with
early-stage dementia and their partners in care. This year several Alzheimer Durham staff, clients and
care partners journeyed to Toronto to participate in an international A Changing Melody on Saturday
March 26th. Three of the 4 sessions featured presentations by people with dementia. In this edition of
our newsletter we would like to highlight the issue of stigma by featuring Christine Bryden¶s
presentation entitled Coping with Stigma and Fear. Christine was diagnosed with dementia at the age
of 46 in 1995. She was a single mother with three daughters, and had to retire from her position as a
senior executive in the Australian Prime Minister¶s Department. Now aged 62, she has survived and
thrived for 16 years with dementia, slowly declining but adjusting along the way.
The following is an excerpt of Christine¶s Coping with Stigma and Fear presentation:
I have lived now with a diagnosis of dementia for 16 years, beating any projections made by
the doctors. I have battled the physical symptoms of this disease, and coped with lots of ups
and downs.
When I was diagnosed, the society and medical view of dementia was one of despair, there
being nothing to do except go home and prepare to die, and to wither away in the mind until I
was an empty shell.
Stigma is a disease of society resulting from the stereotype of dementia. We are shunned by
former work colleagues, and our friends become awkward in our presence, with the picture of
a non-person²the stereotype of the empty shell²clouding their perception of us. Stigma
becomes an invisible veil of misunderstanding, masking our potential and segregating us from
normal society.
Each month I would meet with Liz MacKinlay, a theologian, priest and geriatric nurse. Together
we went on a journey of discovery. Liz encouraged me to write a book about my experiences,
so I could help change the stereotype. This gave me a sense of meaning in life: to speak out
for all those being diagnosed, to encourage others, and to advocate for better support and
services, as well as recognition and inclusion.
By ³coming out´ openly as a person with dementia, by talking in the media and in my book
about what it feels like, I was directly challenging the stereotype. How could I be an empty
shell if I could still talk. But also, if I could talk, did I really have dementia? So I was ignoring
the stigma in order to tackle my fear.
For me, talking, writing, and sharing has helped a great deal in addressing my fear. Like the
Ethiopian proverb, ³He who conceals his disease cannot expect to overcome it.´ If I had
concealed my fear, or even worse given in to it, I could have rapidly been on a downward
spiral into depression.
With Liz¶ encouragement I wrote my first book. Its title expresses the fear so many of us have
at diagnosis. Who will we be when we die? Will we be an empty shell? Liz reassured me that I
would retain my spiritual self, and set my fears in the bedrock of faith and hope.
My motto was: ³I¶m convinced that life is 10% what actually happens to us, and 90% how we
react to it.´ (Charles Swindoll). I realized there was much I could still do, whilst also accepting
the possibility of decline.
EDUCATION
Page 3
Christine details meeting her husband and subsequently joining an internet group of others with
dementia and forming the Dementia Advocacy and Support Network International (DASNI): ³We gave
each other new hope simply by being ourselves. Together we started to work to change the
stereotype and so reduce the stigma of dementia.´ She continues,
We approached Alzheimer¶s Disease International (ADI), seeking inclusion, and improved
services and support. In 2003 I was elected to ADI¶s Governing Board, which was a great
honour, and yet a daunting prospect of travel to meetings and networking on issue papers. At
the same time I had become very active in advocacy in Japan. I worked with a network of
media, care providers and government ministries to prepare for major change. In 2004 Japan
hosted the international Alzheimer¶s conference in Kyoto, and was referring to people with
dementia as the ³demented elderly´. Within two years that had changed to ³people with
cognitive problems´. Now Japanese people with dementia are speaking openly about their
needs, are being heard, and their needs are being met.
Christine reports that her health is still a battle. She stepped down from public commitments for a few
years and focused on family. She recounts gaining insight into her high levels of anxiety: ³Not being
aware of time, nor of the past or future, life in this limbo-land of dementia can be a very stressful
place.´
She sought help for her anxiety and resumed travelling and speaking in 2010-2011. Christine closed
her speech with encouragement for others:
If you are living with dementia like I am, don¶t let fear mask the worth you still have and always
will have. Know that your life has meaning and nurture this sense of meaning in your life.
Find a friend who will listen and encourage²and look for relationships based on love and
connectedness.
Look for the positives in life, and discover the humour that exists in the absurdities of life.
And, find a group who knows what it feels like and will support you, even take action with you.
For me this is DASNI but it may be an early stage support group or other group.
Reach out over the barrier of stigma, and help us overcome our fears.
Source: Christine Bryden, Coping with Stigma and Fear, International A Changing Melody forum, March 26, 2011.
Christine¶s second book, Dancing With Dementia (2005) is available at
Alzheimer Durham¶s resource centre. Visit Christine¶s website Dementia
from an Insider¶s Perspective http://www.christinebryden.com/
Alzheimer Society Durham will soon be striking a planning committee for our
second local A Changing Melody forum in 2012. Please contact Loretta
Tanner, 905-576-2567 or 1-888-301-1106 for additional information.
SPECIAL EVENTS
Page 4
Thank you for the sweet memories!
Thank you to everyone who made the 20th Annual Chocolate Lovers¶ Luncheon a sweet success.
We are grateful for our generous supporters, whether a guest, volunteer, sponsor or donor of
desserts or prizes, you helped us raise nearly $20,000 this year!
Sincere appreciation to:
• All our sweet volunteers who made the day run smoothly ± we couldn¶t do this without you!
Michelle Gimblett, Dana Burton, R.J. Hall, Pauline Langridge, Jane Wagstaff, Lisa Brown, Joy
Cowley, Danielle Cowley, Brenda Hollister, Mitchell Imray, Vince G, Amber Morley, Nishat
Hoque, Karen Morley, Isabella Lorenzo, Lissa Lorenzo, Antonio Miguel and Sharon
Buchanan.
• Pete Walker, our emcee from KX 96FM and Spider Jones our auctioneer.
• Donna and The Silver Bell Flute Choir who provided the background luncheon music and The
McGrath Highland Dancers.
• Our Planning Committee: Susan St. John, Deanna Hollister, Kimberley Barrett, Mary Mooney,
Linda Bredin and Franca Giuga.
Our Brownie Sponsors:
Our Truffle Sponsors:
Oshawa Centre
Special Thanks to
Cake Expectations
www.cakeexpectations.ca
647 637 1180
For the 20th Anniversary
Cake
Be sure to mark your calendar for next year¶s Chocolate Lovers¶ Luncheon to be held
Sunday May 6, 2012
SPECIAL EVENTS
Special Thanks to our in-kind Sponsors
Andrea Dewitt
Anna Shaddock, www.houseshomesandmore.com
Antica Pizzeria 5785 Victoria St, Niagara Falls
APEX Auto, Ajax
Armstrong Funeral, Oshawa
Attention to Detail, North Oshawa
Betty Irving
Bob Ann Dickson
Bootcamp, 905 706 4800
Boston Pizza, Bowmanville
Bowmanville Family Restaurant
Brian Peterson of Brian¶s Birds
Buckingham Meats Co, Brooklin
Build-a- Bear, Oshawa Centre
Calendar Club, Oshawa Centre
Captain George's, Bowmanville
Cactus Clothing Company, Bowmanville
Class Act, Whitby
Classic Flowers, Oshawa
Coffee Time, Bowmanville
Colonial Retirement Residence, Whitby
Crossfit, Whitby
Debbie Benko, www.fitnessbootcampcanada.com
Direct Buy, Pickering
Dolls by Diana
Doulagraphs, Bowmanville
Dr. G. Yao, Bowmanville
Durham Label Inc., Oshawa
East Side Mario, Bowmanville
East Side Mario, Oshawa
East Side Mario, Oshawa Centre
Fairmont Queen Elizabeth
Ganaraska Quilting Guild
Global Pet Food, Oshawa
Gone with the Dogs, Courtice
Goodlife Fitness, Bowmanville
Great Blue Heron Casino
Greenhawk Harness & Equestrian, Whitby
Hair Loft Salon, Bowmanville
Home Building Centre, Bowmanville
Home Hardware, Ajax
Hummingbird Medi Spa, North Oshawa
Intown Gallery, Bowmanville
I-Thai Restaurant, Whitby
Jake's Ladies Clothing Store, Bowmanville
James Printing & Signs, Bowmanville
Jim Meenan
John D. Moore
Kaptured by Kelly
Kelsey's, Bowmanville
Lakeshore Tours & Travel
Lindt Chocolates
Longram Quilting, Bowmanville
Lovell Drugs Ltd., Oshawa
Marigold Ford, Whitby
Mariposa Cruises, Toronto
Marriott Montreal
Mayor Pat Perkins, Town of Whitby
MEDI chair, Whitby
Page 5
Morgan Dobson
Niagara Parks Commission
Nice Bistro, Whitby
No More Cooking, info@NoMoreCooking.ca
NTM Studio, Toronto
Oak Unlimited Furniture, Bowmanville
Oh Canada Eh, Niagara Falls
Ollie Golf, Ajax
Ontario Science Centre
Oshawa Centre
Pet Value, Bowmanville
Proper Home Care,
Rekker's Garden Centre, Bowmanville
Roses Bistro & Flower Boutique, Bowmanville
Roy & Sue Vanderkwaak
Sewing Essentials, Bowmanville
Sheridan Nurseries, Whitby
Shoppers Drug Mart, Bowmanville
Shoppers Drug Mart, Oshawa
Shoppers Drug Mart, Whitby
State Farm Insurance, Brooklin
Stuart Neeley
That Chocolate Shoppe by the Lake, Pickering
The Bay, Oshawa Centre
The Regional Municipality of Durham
Under Armour Inc.
UOIT/Durham College
Vandermeer Nursery, Ajax
Via Rail
Virgin Mobile
We Scoop Dog Poop
Plus all the ASDR friends!!
Our Delicious Desserts Courtesy of«
Abbylawn Manor
Alexa Teare
Aunt Audrey's Favourites
Bakers Table
Cakes By Stephanie
M & M Meat Shops, Oshawa
Metro North Ajax
Metro North Whitby
Metro Oshawa
No More Cooking
Sugar Chalet Inc
Sylvia Chapell
Taunton Bakery
The Westin Harbour Castle Toronto
Toronto FC
Williams Chocolates, Whitby
Thanks to monetary donors.
Alex McGregor Drugs, Bowmanville
Canada Wide Group
James Insurance Broker Lt., Bowmanville
Orchard Villa, Pickering
Tribute Homes
Mr. Douglas Broome
Kent Croland
Table center pieces courtesy of
Hotner Greenhouse Garden Centre 905-655-5866
The best way to thank our sponsors is to support their businesses!
FAMILY SUPPORT
Page 6
Let¶s talk about stigma
Stigma refers to negative attitudes
(prejudice)
and
negative
behaviour
(discrimination)
toward
people
with
substance use and mental health problems.
Stigma includes:
•
•
having fixed ideas and judgments²
such as thinking that people with
substance use and mental health
problems are not normal or not like
us; that they caused their own
problems; or that they can simply get
over their problems if they want to
fearing and avoiding what we don¶t
understand²such
as
excluding
people with substance use and
mental health problems from regular
parts of life (for example, from having
a job or a safe place to live).
We all have attitudes and judgments that
affect how we think about and behave
toward others. When we talk about
attitudes and behaviour toward others
based on their gender, sexual orientation,
culture, race or religion, we use the words
prejudice and discrimination.
Why is stigma such an important issue
for people with Alzheimer's disease or a
related dementia? What is the Alzheimer
Society doing to break this stigma?
There is no doubt that stigma remains an
issue for people living with Alzheimer's
disease or a related dementia. Because of
this stigma, people don't seek a diagnosis,
and they don't seek treatment. For those
that are diagnosed, many don't tell their
family and friends, and do not reach out to
benefit from the support offered by the
Alzheimer Society, and other community
groups. This means that thousands of
people are facing Alzheimer's disease or a
related dementia on their own. Ironically,
the social isolation caused by this stigma
also contributes to a further decline in brain
health.
The Alzheimer Society continues to work
hard to raise awareness about the disease,
and to educate people about the myths and
reality of Alzheimer's disease. Through our
First Link® program, we are working harder
than ever to reach out to people just after
diagnosis, linking them with local support at
a time when they need it most.
On a broader scale, the Alzheimer Society
is also working closely with the Mental
Health Commission of Canada, ensuring
that those with dementia are not forgotten
in the creation of the anti-stigma campaign.
As people with dementia are diagnosed
earlier, they are in a unique and strong
position to have their voices heard. By
hearing from those who are living with
dementia, we can begin together to break
down the stigma that prevents people from
getting the support they need and being
able to continue to live meaningful lives.
Source:
http://www.alzheimer.ca/english/media/putyourmind
10FAQ.htm#33
http://www.camh.net/care_Treatment/Resources_clie
nts_families_friends/stigma_brochure.html
FAMILY SUPPORT/EDUCATION
Page 7
Tangles ± A Story about Alzheimer¶s,
My Mother and Me
By Sarah Leavitt
What do you do when your outspoken, passionate,
and quick-witted mother starts fading into a
forgetful, fearful woman? In this powerful memoir,
Sarah Leavitt reveals how Alzheimer¶s disease
transformed her mother, Midge.
Sarah, what do you think readers will find most notable about Tangles?
Tangles is a graphic memoir about my mother dying of Alzheimer¶s. A number of
readers have told me that it¶s the first graphic narrative they¶ve read (I use the term
³graphic narrative´ to include both fiction and non-fiction comics). It takes them a
few pages to get used to the form, and then they dive in. Other readers have
mentioned how frank the book is ± for example, scenes where I show my family
arguing, or struggling to cope, or doing personal, intimate care for my mom when
she gets really sick. Readers have also said that they got a good idea of who my
mother was, and how deep a loss this disease created for my family. Some people
have said they were surprised that there were funny parts!
Source: www.bookclubbuddy.com, (October 14, 2010)
Next Steps for Families and Friends-One day workshop
Saturday July 16, 9:30 until 3:30.
Cost $10.00, location to be determined
This workshop will offer family members/care partners of
individuals with Alzheimer's disease (or a related dementia) an
overview of dementia and practical strategies for responding to
challenging behaviours and caregiver stress.
Care in the Later Stages
Tuesday evenings 6:00 to 8:00 in August 2011 at the office.
This three-part series of workshops is for family caregivers of persons with Alzheimer¶s disease or a
related dementia. These sessions address issues associated with the later stages of Alzheimer's
disease or related dementia (ADRD). Caregivers may sign up for all three workshops or just the
sessions they feel are most relevant to them. Topics include ± care and comfort in later stages,
advocating for your care needs in long-term care and coping with grief.
Please call the office 905-576-2567 for more details.
ALZHEIMER SOCIETY OF DURHAM REGION SUPPORT SERVICES
AJAX-PICKERING
(4th Wednesday evening)
EAST DURHAM
(3rd Tuesday evening)
OSHAWA-WHITBY (Oshawa location)
(1st Wednesday afternoon)
June 22
July 27
Aug 24
Time: 6:30-8:30p.m.
Orchard Villa Retirement Residence
Victoria Harbour Lounge
1955 Valley Farm Road , Pickering
June 21
July 19
Aug 16
Time: 6:00 p.m. ± 8:00 p.m.
Lakeridge Health Bowmanville
47 Liberty St. S.
Lambert Conference Rm., Bowmanville
June 1
July 6
Aug 3
Time: 1:00 p.m. ± 3:00 p.m.
Alzheimer Society of Durham Region
Oshawa Centre Mall
419 King Street W., Ste. 207, Oshawa
AJAX-PICKERING
(2nd Wednesday morning)
June 8
July 13
Aug 10
Time: 10:00 a.m. ± 12:00 p.m.
Pickering Village United Church
300 Church St. N., Ajax
NORTH DURHAM
(last Tuesday afternoon)
June 28
July 26
Aug 30
Time 1:30 p.m. ± 3:30 p.m.
Trinity United Church
20 First Ave., Uxbridge
OSHAWA-WHITBY (Whitby location)
(3rd Wednesday afternoon)
June 15
July 20
Aug 17
Time: 1:00 p.m. ± 3:00 p.m.
St. Andrews Presbyterian Church
209 Cochrane Street, Whitby
NORTH DURHAM SATELLITE OFFICES ± June 20, July 18, August 15
Port Perry ± West Shore Village, 293 Perry Street, Port Perry 9:00a.m. ± 12:00p.m. **Booked appointments preferred**
Beaverton ± Lakeview Manor, 133 Main Street West, Beaverton 1:00p.m. ± 4:00p.m. **Booked appointments preferred**
EARLY STAGE SUPPORT GROUP
For person with early stage Alzheimer¶s disease or related dementia and their care partners.
Offered at scheduled times throughout the year. Call the Society for more information.
Alzheimer Society of Durham Region
Oshawa Centre (Executive Centre)
419 King Street West, Suite 207
Oshawa, ON L1J 2K5
To Contact Us
Phone: 905-576-2567 Toll Free: 1-888-301-1106
Fax:
906-576-2033
Email: info@alzheimerdurham.com
Web:
www.alzheimerdurham.com
Office Hours
Monday to Thursday 8:00 a.m. - 5:00 p.m.
Friday 8:00 a.m. ± 4:00 p.m.
Our Vision
To be a leader in the Alzheimer movement
and recognized by our community as an
essential provider of dementia-related
services and supports.
Our Mission
Alzheimer Society of Durham Region¶s
mission is to improve the quality of life of
people with Alzheimer¶s disease or a related
dementia and their care partners.
Closed
Friday July 1st
Monday August 1st
Alzheimer Society of Durham Region
gratefully acknowledges funding from the
Central East Local Health Integration Network
and our donors
who show their generosity in so many ways.
The printing of ³Staying Connected´
is generously sponsored in part by
Thank you for your support