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A New Journey: Early-Onset Dementia
By Cassandra Van Dyck
A bimonthly newsletter published by the Caregiver Support Program
November/December 2015
“The mother in her believed that the love she
had for her daughter was safe from the may-
hem of her mind, because it lived in her
heart.” - Lisa Genova
Still Alice tells the story of a fifty year-old cognitive
psychology professor, wife, and mother who is diag-
nosed with early-onset genetic Alzheimer’s disease.
Alice must come to terms with her diagnosis and
changing relationships with her family while experi-
encing the effects of Alzheimer’s. I watched the film
just over a month ago and still feel haunted by how
quickly the disease affected Alice’s quality of life,
despite her healthy lifestyle, age, and education. It
can feel frightening to imagine yourself or someone
close to you going through what Alice’s character
did. After thinking about the film for a while, I real-
ized that although Still Alice could be categorized as
a sad movie, it could also be filed under some other
groupings. Alice’s diagnosis did not mean her life
was ending, but that it was changing. The journey
through her illness was not just sad, but romantic,
inspirational, and loving.
Diagnosis
Early-onset dementia disease, commonly known as
early-onset Alzheimer’s, can occur in people in their
30s, 40s, or 50s. “Dementia” refers to a group of sy-
-mptoms that affect mental tasks and Alzheimer’s
is the most common type diagnosed. It can be cat-
egorized as either “common” or “genetic.” Most
people diagnosed will have common early-onset,
which progresses similarly to the way it would in
someone older. Genetic early-onset is extremely
rare. The symptoms of both types are the same as
Alzheimer’s diagnosed later in life: difficulty solv-
ing problems, forgetting important dates or
things, losing track of where you are and how you
got there, etc. If Alzheimer’s disease is suspected,
doctors will run a series of tests before making a
diagnosis. Early-onset Alzheimer’s can be particu-
larly challenging for people to accept and adapt
to. Generally, there is some expectation that at a
certain age, one will not function at the same level
they were once able to. People do not usually ex-
pect this to happen in their 30s, 40s, or 50s, espe-
cially when the changes affect their memory, their
ability to care for themselves, and the capacity to
November/December 2015 Page 2
socialize. It is natural for those affected and for caregiv-
ers to feel fear, grief, and frustration.
Communication
One of the ways caregivers can help themselves to man-
age fear and frustration is to increase their knowledge
base so they can better communicate with their loved
ones. When someone is diagnosed with early-onset Alz-
heimer’s disease, it can become increasingly difficult to
have conversations similar to those you used to have or
to explain things if they are confused, such as why you
need to go to certain appointments or how members of
your family are connected. It may be hard to know
when to correct your care partner and when to accept
their view of an event or situation. Fortunately, there
are resources that can help caregivers navigate this new
journey. Claudia J. Strauss’ book, Talking to Alzheimer’s,
may be very helpful. It is meant to be used as a refer-
ence guide for those struggling with particular issues,
such as how to handle repetition, saying “no” without
causing mishap, and how to start a conversation.
Strauss gives examples and suggestions for managing
many situations, but the undercurrent to her book
seems to be the willingness to listen and to learn how to
redirect a conversation if necessary. Taking the time to
really hear what your loved one is saying can be more
helpful than trying to stop them from saying what they
need to. When there is a pause, you may be able to pick
up on part of what they’ve said and take the conversa-
tion another way.
Self-Care
Along with pages of communication tips, Strauss em-
phasizes the importance of caregivers’ self-care. It can
be very hard to watch your loved one’s abilities change
and even harder to care for them if you are not taking
care of yourself. Grief is a very common part of a care-
giver’s journey, and it can be helpful for caregivers to
reach out to family members and friends, support ser-
-vices and network groups. Remember to ask for
help with tasks, and to take the time to do one
thing every day just for you—even if it is as simple
as enjoying a cup of tea or taking a bath. If you are
caring for your loved one at home, it can require a
great reserve of patience, making these breaks all
the more useful. Consider using respite services if
you feel that you need a longer break, or asking a
family member or friend to spend some time with
your loved one so you can go for a walk or coffee
by yourself. If you are caring for someone in facility
care, it can be helpful to check in with yourself to
see how you are feeling about visiting. While
Strauss does recommend letting too much time go
between visits with someone with dementia, she
does encourage caregivers not to get too caught up
in feeling that they have to visit for a certain
amount of time or on regular days. It’s important to
listen to yourself and what you need, as well. If you
are not feeling up to visiting, or if the visit feels too
much to handle, the best thing you may be able to
do for yourself that day is to stay home or leave
earlier.
Coping with early-onset Alzheimer’s disease can be
incredibly trying, but it may help to think of it as
the start to a new journey, instead of the end of an
old one.
“If you put the disease in the background
and the person in the foreground, always
remembering who he is, then you will be like
the sun shining light toward him and he will
shine light back on you.” - Claudia J. Strauss
For more resources, see our Wellness Corner on
page 4. For more self-care tips, read our Self-Care
for the Holidays article on page 5.
The Family Caregivers’ Grapevine Page 3
Walk and Talk
Tuesdays, November 3rd and December 1st,
1:30PM-3PM
Rejuvenate with a stroll on the Ambleside seawall,
get to know other caregivers and enjoy the fresh air.
The walks take place rain or shine. Meet us by the
public washrooms at John Lawson Park in West Van-
couver.
Network Groups
Wednesdays, November 18th and December 9th,
10:30AM-12:30PM and Thursdays, November 5th
and December 3rd, 7PM-9PM
*Please note the time change in November, due to
Remembrance Day.
A sneak peek at upcoming Network Groups:
Stress Management Tech-niques (Nov. 5): Dr. Brian Da-vies will share stress manage-ment techniques for caregiv-ers. We will explore natural approaches to supporting the body, mind and spirit through times of stress and challenge.
Mindful Communication (Dec. 9): Murray Kennedy will guide us through a com-munication process that helps us clarify what we are truly experiencing, and invites us to listen deeply to others.
Holiday feasting! In December, both the daytime and the evening groups will have potluck meals at the regularly scheduled meetings. If possible, please let Karyn know if you are planning to bring
November 2015 Sun Mon Tue Wed Thu Fri Sat
1 2 3 Walk and
Talk 1:30PM
-3PM
4 5 Network
Group 7PM-
9PM
6 7
8 9 10 11 12 13 14
15 16 17 Cultivat-
ing Balance
5-7PM
18 Network
Group 10:30
-12:30PM
19 20 21
22 23 24 Dementia
Care 1:30-
3:30PM
25 26 27 28
29 30
For registration and information on all sessions, contact Karyn by email at
[email protected] or by phone at 604-982-3320.
November/December 2015 Page 4
Gain coping skills to reduce stress in your caregiving role
Learn helpful tools to communication effec-tively with your family member or friend
Receive key information on Representation Agreements and Power of Attorney
Evening of Calm & Connection Monday, December 21st, 2015 from 6:30-8PM at Capilano Mall, Room 203. You are invited to come and practice a little self-care during the holiday season. A time of relaxa-tion, connection, and music as we reflect on what has inspired or touched us throughout the year; and release the experiences of difficulty and sor-row. Please let Karyn know if you will be joining us for this evening of TLC.
a sweet or savory dish to share.
Cultivating Balance Tuesdays, November 17th and December 15th from 5-7PM at Capilano Mall, Room 203. Explore the challenges and joys of being a caregiv-er, recognize your limits and boundaries, learn ways to use your strengths and skills, cultivate health and well-being in yourself and share ideas, information and wisdom.
Effective Communication in Dementia Care Tuesday, November 24th, 2015 from 1:30-3:30PM, Silver Harbour Seniors Centre, 144 22nd St. N. Van North Vancouver Representatives from the Alzheimers Society and from Personalized Dementia Care Solutions will present effective communication strategies and information on future planning.
Wellness Corner
This month, we’re highlighting some resources for those caring for loved ones with early-onset dementia.
Talking to Alzheimer’s: Simple Ways to Connect
When You Visit with a Family Member or Friend,
Claudia J. Strauss
Still Alice, Lisa Genova
Paul’s Club: a social and recreational day program
in Vancouver developed to cater to the specific
needs of those living with Early Onset Dementia.
www.paulsclub.ca
MyParkgate Break: a gathering place for individu-
experiencing the changes associated with mild to
moderate dementia. www.myparkgate.com/
parkgate-break
UBC Clinic for Alzheimer Disease and Related De-
mentias: provides diagnoses, information about
available treatments for specific symptoms, counsel-
ling for strategies for coping with the day to day diffi-
culties which occur due to mental changes, etc. Pa-
tients are typically referred to UBCH CARD by a doc-
tor.
The Family Caregivers’ Grapevine Page 5
Self-Care for the Holidays
By Cassandra Van Dyck
“Rest and self-care are so important. When
you take time to replenish your spirit, it al-
lows you to serve others from the overflow.
You cannot serve from an empty vessel.” -
Eleanor Brown
If we based our idea of the holidays solely off of
movies, television shows, and radio broadcasts, we
might think every December is supposed to be
filled with snow, bountiful meals with smiling fac-
es, and mountains of presents. Maybe you’re lucky
and parts of the month will look like that for you,
or maybe you have memories of past years that
resembled postcards and films but they feel far
away now. No matter what your expectations are,
it’s sometimes helpful to have someone say what
not many do: the holidays can be hard. Fortunate-
ly, there are many ways to cope with challenges
and to make sure that you’re able to soak up some
of that holiday spirit for yourself.
Caregivers can experience many challenges during
the holiday season. There may be obstacles to nav-
igate, such as managing swelling to-do lists and
obligations with the increased expectations of holi-
day parties and family events. There might be con-
cern about how to incorporate your loved one in to
family events while accommodating their needs.
You may simply be feeling over-stretched and
tired. The following self-care tips can be exercised
any time of the year, but may be especially helpful
over the next few months.
Share the load.
So much stress and frustration can stem from feel-
ing that you have to do it all and that there is no
where to turn to for help. Remember that many peo-
ple are more than willing to lend a hand if given the
opportunity and are often happy to do so. Allow
them to judge for themselves whether or not they’re
able to help. Asking for assistance can be made easier
when you use tools to help yourself stay organized so
others know what to do and when.
www.lotsahelpinghands.com is one tool you can use
to share your to-do list. The website provides a user-
friendly platform for caregivers to share calendars
that help assistants coordinate tasks. You could also
try sending group emails or asking someone to help
you delegate tasks if you’re feeling unsure of how to
do so.
Take some time for yourself every day.
This may feel like the hardest thing to do when
you’re caring for someone else, but it is also one of
the best things you can do to support your own well-
being. The time you take does not have to be long –
even 10 or 20 minutes can make a difference. Spend
the time doing something that brings you joy. It may
be enjoying a slow cup of coffee, walking around your
neighbourhood, reading a good book, or calling a
friend that makes you laugh. Whatever it is that
makes you smile, prioritize the time and try to do it
November/December 2015 Page 6
A Song For Life
Stars illuminating the sky,
The enjoyment of me in your eyes,
These are the things I love about life!
Sun warming the earth,
Babies water births,
These are the things I love about life!
What chocolate rivers bring,
Hearing a myriad of voices sing,
These are the things I love about life!
When magic appears,
When the Spirit sparks my tears,
These are the things I love about life!
The majestic guardians with leaves,
And the joy that laughter weaves,
These are the things I love about life!
Beautiful suns that never grows old,
The wisdom you gain that is more precious than
gold.
These are the things I love about life!
Music that is given the chance to live,
The gentleness that only compassion can give,
These are the things I love about life!
I smile with delight, for there is so much more,
Things I have yet to love and adore,
Surprising treasures I will find on my shore,
And these will be the things I love about life!
By Bria Hodgson
every day.
Honour your journey.
While the holidays can be a time of great happi-
ness, it can also bring feelings of grief. If this
happens for you, remember to be gentle with
yourself. Take the time to honour that what
you’re going through is important. Try writing it
in a journal, talking to a friend or family member,
or speaking with a professional.
Share a fun activity with your care partner.
Sometimes shaking up a routine can help shake the
blues. Try going for a walk in a new location, colouring,
or creating a simple art project together. December al-
so offers many free, fun events, such as the carol ships,
craft fairs, tree lighting celebrations, lantern festivals,
and parades.
The Family Caregivers’ Grapevine Page 7
Gratitude Corner The Gratitude Visit
Can you think of someone that has impacted your life for the
better? It may be a person you knew for a brief amount of
time, or someone that has been around for longer than you
can remember.
When you have the person in mind, write them a letter and let
them know how they have affected your life. It may be that
they cheered you up when you were feeling down one day, or
helped you with something you were struggling with. Let them
know in the letter that it meant something to you.
If they live close to you, arrange a visit with them. Bring the
letter with you and consider reading it aloud.
Recognizing someone important in your life will make you and
the receiver of the letter feel gratitude and appreciation. Who
couldn’t use more of that in their life?
December 2015 Sun Mon Tue Wed Thu Fri Sat
1 Walk and
Talk 1:30PM
-3PM
2 3 Network
Group 7PM-
9PM
4 5
6 7 8 9 Network
Group 10:30
-12:30PM
10 11 12
13 14 15 Cultivat-
ing Balance
5-7PM
16 17 18 19
20 21 Calm &
Connection
6:30-8PM
22 23 24 25 26
27 28 29 30 31
November/December 2015 Page 8
North Shore Community
Resources Caregiver Support
Program
201-935 Marine Drive
North Vancouver, BC
V7P 1S3
The Family Caregivers’ Grapevine
is a bi-monthly publication that
promotes the importance of self-
care and provides practical infor-
mation to help with the caregiv-
ing role.
Would you like to contribute to
our next newsletter?
Please contact Cassandra at:
or
604-982-3319
Don On Dawn
I arose at dawn one day
Looked out and prayed
Sunlight ever so bright
Lighting the sky on heigh(t)
Dawn spoke to me to say,
“Please keep on the way
With all your might
God in heaven is your light”
Caregiving is your role to-day
Pray well, don’t skirt
Above all, Don’t be a Jerk!
Pause and be good and calm
Reach out with you all you can
To others on your side
I God, please do abide
D.L.J. M.S.W. MBA
Veteran RCAF NATO
Age 80 plus years
