it’s not just their disease - it is ours too · 2017 alzheimer’s awareness campaign captures...
TRANSCRIPT
By DEBORAH BARKERExecutive Director AlzheimerSociety of Grey-Bruce
This year, the Alzheimer Societyof Grey-Bruce is recognizing30 years of service to ourcommunity. During those 30years we have provided supportand counselling for thousands ofpersons with dementia and fortheir caregivers.
We have played, and we continueto play a vital role in the livesof the growing numbers ofindividuals we support.
Each year, 25,000 Canadianshear the words, ‘you havedementia.’ But dementia is morethan just numbers. Friends,families and members of ourcommunities all experience thepersonal and social impact ofdementia. For our health-caresystem and economy this meanshigher demand for services andsoaring costs. It’s not just theirdisease. It’s ours too.
That’swhy theAlzheimerSocietyof Grey-Bruce ispleasedto joinAlzheimerSocietiesacrossCanadain askingCanadians to be #InItForAlzand support the programs andservices that are offered toaffected individuals, their familiesand their caregivers.
Through this campaign, theAlzheimer Society also hopes tochange the conversation abouta disease that continues to beshrouded in silence.
Dementia doesn’t discriminateand can affect anyone. It’s one ofthe fastest-growing diseases of ourtime, but still has no cure or effectivetreatments. It can only be beat if
everyonetakes action.
The gratitudeexpressedby ourclients is areflection ofthe profoundeffect thatprovidinghope,support and
relief has for them.
The difficult news is that thenumber of people affected isgrowing at such a significant ratethat it challenges our ability tokeep up. Over the last two years,our active client list increased24% to more than 1,100 people,and our education and trainingservices increased 36% to 2,600persons.
Last year we participated in ayearlong study funded throughthe Ontario Brain Institute. Theresults were significant. Our
clients reported we helped themincrease their understanding ofdementia, increased their skillsand abilities to cope, assistedthem in times of need and helpedthem access other resources inthe community.
We need to continue to raiseawareness and understandingto alleviate the stigma of thedisease, And we need toencourage those affected to seekearly diagnosis and support inorder to maintain the highestquality of life possible through thecourse of the disease.
You, too, can be #InItForAlz andmake a difference right from yourcomputer.
Visit our website www.alzheimer.ca/greybruce to learn more andto read the personal stories ofother Canadians impacted bydementia. You can also use thehashtag #InItForAlz to spreadthe word that “it’s not just theirdisease. It’s ours too.”
A common question we hearat the Alzheimer Society is onethat involves the confusionover Alzheimer’s disease anddementia. Aren’t they the same?Is one worse than the other?What is the difference?
In actuality, dementia isn’t adisease at all but an umbrellaterm of symptoms that describea variety of brain disordersinvolving memory loss andbehavioural changes.
Alzheimer’s disease is the mostcommon of these disordersand according to the AlzheimerSociety Canada, accounts foralmost 65% of all dementiasin Canada. There are othertypes of dementia, including(but not limited to) Vasculardementia, Lewy body dementiaand Frontotemporal dementiathat impairs brain function andassociated behavior.
Dementia is NOT a normal partof aging. That said the biggestcontributing factor in Alzheimer’sdisease and other dementias isaging.
The reason for thosecontrasting but similar sounding
statements is that with agecomes a higher incidence of riskfactors. These risk factors, whichinclude high blood pressure,stress and obesity, are implicatedas contributors to the presenceof dementia.
Like dementia, these risk factorsalso shouldn’t be consideredas a normal part of aging. Allof which speaks to the currentthinking regarding dementiaprevention and brain healthwhere the concept of an overallhealthy lifestyle with activeexercise, socialization, diet andintellectual stimulation can playan important role in staving off ordelaying the onset of dementiaas well as providing a richer andhealthier life.
The other reality of dementia isthat it is a multi-victim type ofillness. It not only changes thelife and livelihood of the person
afflicted, it also profoundly affectsothers around that person. Thecircle of influence that dementiaradiates includes family, carepartners (likely family members),friends and work colleagues(depending on age of onset).
All will be affected by thedisease, some to a lesserextent and others in a way thatcould be easily described as allconsuming. The theme for the2017 Alzheimer’s awarenesscampaign captures this conceptin fewer than ten words. It’s notjust their disease. It’s ours too.
At the Alzheimer Society, we areseeing more awareness andopenness about the disease butit isn’t enough. There needs tobe less stigma associated withit. With a willingness to face therealities of dementia and not runfrom it, comes hope. More hopethan ever before.
Yes, we are still searching forthe basic answers but over thelast twenty-five years we haveseen important developmentsin support programs, services,clinical care and research.
It’s not just their disease - it is ours too
Alzheimer’s or dementia– what is the difference?
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Owen Sound, Ontario N4K 2G9
Tel: 519-376-7230Toll-free: 1-800-265-9013 FREE
Email: [email protected]
Web: www.alzheimer.ca/greybruce
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Bill Walker, MPPBill Walker, MPPBill Walker, MPPB R U C E - G R E Y - O W E N S O U N D
The Alzheimer Society of Grey-Brucewill be holding our second annualWalk for Alzheimer’s this May.
Supporters are encouraged toregister online either as an individualwalker or as part of a team.
We will be holding two Walkssimultaneously, at Kelso BeachPark in Owen Sound and at SulphurSpring Conservation area southof Hanover.
Registration at both locations opensat 9 a.m. and the walks officiallybegin at 10.
Last year was our first outdoor Springwalk and the results were fabulous– Grey-Bruce was one of the topregions in Ontario receiving moredonations than all but five societies!
Please mark your calendar for:Saturday May 13, 2017Owen Sound and HanoverOnline registration is now open at:www.walkforalzhiemers.ca
Walk forAlzheimer’s
May 13
Brian Morassutti, Carrie Watson,Joyce Bryans (Home Visits)
Greystone Office Centre, 345 8th St. East,Suite 101 • 519.376.4174
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We spoke - the Senate listened
Caregivers: Are You Burning Out?
In 2012, Mary Beth Wighton ofSouthampton was diagnosed withFrontotemporal Lobe Dementia atthe age of 45.Since her diagnosis,Mary Beth and her family havededicated themselves to living wellwith dementia and to advocatingfor others with the disease.
By: Mary Bethy WightonPerson With Dementia
There are few times in theaverage Canadian’s life wherethe opportunity to influencea nation presents itself. I amone of the fortunate few to beable to capitalize on such anopportunity. In May, 2016 theOntario Dementia AdvisoryGroup (ODAG) had been invitedto Ottawa to present before theStanding Senate Committeeon Social Affairs, Science andTechnology.
As people living with dementiawe were to be witnesses for theSenate’s study on dementia inCanadian society. Using videoconferencing technology I waspresenting from my home inSouthampton while our other threeboard members: Phyllis Fehr,Bill Heibein and Bea Kraayenhofwere seated in the Senate room inOttawa.
ODAG considered it a victory justto be in front of the Senate. Wehad worked hard to get there. Wepushed for our rights as Canadiancitizens with disabilities to obtainconcessions which allowed us tobe better presenters.
In my speech I stated a very
important fact: “My story is likemost other people living withdementia. It is our desire to livelife fully and utilize our remainingskills that help us remain strong.We reject the notion of going hometo die.The time between diagnosisand end stage dementia can bemany years. In the meantime, wehave the ability to live life well.”
After ODAG finished itspresentation, we congratulatedourselves, partners andsupporters. We, Canadians withthe true experience of living withdementia, had done our work,now it was time for the Senate todo theirs. The question was, didthe Senate hear us?
The answer came this pastNovember. In an extensivereport release titled “Dementia inCanada: A National Strategy forDementia-Friendly Communities.It stated “A fully funded NationalDementia Strategy is urgentlyneeded to support caregivers,research efforts and Canadiansliving with dementia.” Within thereport, there is a chapter called“The Patient Perspective.” Myanswer to the question on if wewere effective was answered: “Ofall the expert testimony offered
throughout this study, none
was more compelling than that
which was given by members of
the Ontario Dementia Advisory
Group...”
We had done it! Four average
Canadians living with dementia
had managed to communicate
our perspective. The Senate
had not only listened but truly
embraced our words and did
their best to make sure all of
Canada also heard us.
I felt like a superstar as
congratulations poured in. I’m
so proud of ODAG and our
very important partners. This
moment has negated the many
times when I have shouted out
in rage and despair. It is the
moment that I will keep near
and dear to my heart and pull
out when I need to remind
myself that I, a person living
with dementia, had made a
difference.
The Ontario Dementia Advisory
Group (ODAG) is a group of
people living with dementia.
Formed in 2014, ODAG’s
mandate is to influence policies,
practices and people to ensure
that people living with dementia
are included in every decision
that affects their lives. For more
information about ODAG visit
their website at www.odag.ca. If
you are a person with dementia,
ODAG invites you to become a
member. For more information,
contact the group by email:
Caregiving is often physically
and emotionally stressful. In an
effort to provide the best care
possible, you might put your
loved one’s needs before your
own. In turn, you could develop
feelings of sadness, anger and
loneliness. Sometimes these
emotions can trigger depression.
It is not unusual for care partners
to develop depression as a result
of the constant demands placed
on them while providing care.
In an effort to provide the best
care possible for their loved one,
caregivers often sacrifice their
own emotional and physical
needs, which can take a heavy
toll – even on the most resilient
person.
Here are some tips to preventburnout.
• Ask for help: Is there anotherfamily member or a friend youcan ask to be more involved.You may also consider seekingout respite services or caregiversupport groups. The AlzheimerSociety offers caregiversupport groups in severalcommunities. Visit our websitewww.alzheimer.ca/greybruce formore information.
• Remember other relationships:Showing loved ones and friendsyou care about them can give youstrength and hope, it’s importantto make time for all those you careabout and care about you.
• Start a journal: You may have
ditched your childhood diary
long ago, but keeping a journal
can help you gain control of
your emotions and improve your
mental health.
• ‘You’ time: Taking time for
yourself every day, even just a
few minutes, is one way to help
you recharge. Reducing your
stress will make you a better care
partner.
• Stay positive: Despite the
endless pressures placed upon
you, caregiving allows you to
make a positive difference in
your loved one’s life. It’s good for
your happiness and health to find
ways to stay positive. At the end
of the day, it’s about believing in
the power of good, not bad.
618 William St., Durham, Ontario N0G 1R0
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1010 - 9th Ave WestOwen Sound, ON.519-376-0120
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Help to find a cureby supporting theAlzheimer Society.
Be a superheroLeave a legacy
Preparing your Will is not a subject most peopletalk about easily. We certainly don’t wake up inthe morning thinking ‘Ah yes, today is the dayto confront my mortality and get that documentdone!’
We avoid, ignore and put off to another day.More than 50% of Canadians do not have a Will.
Even among people who have already made aWill, many do not have it professionally reviewedevery few years to make sure it reflects currenttax and family law.
The only way to ensure that your assets - thethings that you have worked hard all your lifeto acquire - will be passed on in a timely, tax-effective manner, according to your wishes, isto have a valid, up-to-date Will.
What does this have to do with being aSuperhero? Completing your Will and Powersof Attorney takes care of your family, protectsyour assets and can support causes that aremeaningful to you.
In fact charitable bequests to registeredcharitable organizations like the AlzheimerSociety of Grey-Bruce can help reduce taxesafter death.
Having the courage to protect what’s important,put the needs of others first and make theworld a better place – now that sounds like aSuperhero.
Making a Will and planning your estate isimportant for everyone, not just the wealthy.Dying without a proper estate plan in place mayleave your family with needless tax and legalproblems, at an extremely stressful time. What’smore, your property may not be distributedas you intended. Having an up-to-date estateplan with a valid Will is essential to ensure yourwishes are carried out.
Consequences of not having a written Will
1. Your savings, investments and property willbe divided according to provincial law, allowingthe province to decide the distribution of yourestate for you.
2.You will have no say in who benefits from yourlifetime of effort. Provincial law will determinewho your heirs will be.
3.Your estate’s assets may be depleted by taxesand unnecessary administration costs.
4. The settlement process will likely be drawnout and your family could undergo financialstress.
5. You will not have the opportunity to expressyour choice of a guardian for your youngchildren.
6. You will not have a choice of Executor/Trustees, the individual or institution who willact on your behalf and carry out your wishes.
7. There can be no donations or gifts to yourfavourite charitable organizations.
8. And finally, if you do not have a spouse orany next of kin, the province will take all of yourestate into its own treasury.
As you consider making or updating your Will,always seek professional advice to ensureyour financial goals are considered, your taxsituation reviewed and your charitable givingtailored to your circumstances.