Monday, 28 January 2013

The Partnerships in Dementia Care Alliance is holding a Webinar

Changing the Culture of Care for Persons Living with Dementia: The first phase of The Partnerships in Dementia Care (PiDC) Alliance Culture Change Process



Space is Limited. Registration is FREE!


Darla Fortune, PhD, Postdoctoral Fellow, Murray Alzheimer Research and Education Program
Sacha Geer, PhD, Knowledge Translation Specialist, Murray Alzheimer Research and Education Program


In this online event, aimed at practitioners and others interested in the culture change process, we talk about how the Partnerships in Dementia Care (PiDC) Alliance began the process of facilitating culture change with our partners in 3 Long-Term Care and one community based health care coalition.

This talk will detail the need for culture change, the expected benefits, and explain the first of the 5 step process that we are using to facilitate culture change in LTC and community based health care settings.  This step is called “Dawning”.  We will talk about how to start the culture change process, how to bring the right people to the table and how to create effective, empowered relationships and partnership approaches to care for individuals living with dementia, staff and family partners in care.

The work of the PiDC Alliance is guided by the theoretical foundations of Appreciative Inquiry (AI).  This approach means that we focus on identifying and building upon the positive experiences and strengths within each care setting we are exploring—a marked change from the problem oriented focus of many change processes and care approaches. At the end of this event, the participant will have a sound idea of the beginnings of the culture change process, and understand some of the speedbumps and ramps to opportunities that came from this first phase in each of our Culture Change Coalition sites.

To register complete our online registration form by clicking on the link above, or cut and paste it into your internet browser.
We ask that you only register for this event if you are certain you can attend, we also encourage participants joining from the same location or organization to share a computer, as we are imited to 100 spaces.

Thank you.

Wednesday, 23 January 2013

Partnering Together and Dealing With Issues Early

By Arlene Jeffrey, family partner in care

My husband, Bill, is 63 and was first diagnosed with Cognitive Memory Loss about 3 years ago and began using Aricept about a year and a half ago.  I noticed some behaviours that concerned me about 7 to 10 years ago and he lost his job 5 years ago.  I am sure that the memory loss issues was the reason he lost his job.  He told me that he started asking people to remind him of things.

He has never had a good memory so it was difficult to detect at first.  I knew something was wrong when he had difficulty finding things in the kitchen.  He had always done the cooking so it raised a red flag for me, especially when I found him using a recipe one day - he had never done that before.

The progression of the illness in his case is definitely slow.  For this reason, we have been able to cope fairly well with the changes as they happen.  It is much more difficult for those who have to deal with a fast progression because they don't have much time to deal with each change as it occurs.

Last year we began using the services of the Alzheimer Society and it has helped us a great deal.  I have always been a proactive person, so I took a couple of classes myself to learn more about the illness and how I could best help my husband.  Then my husband agreed to join me in going to the classes that were geared for both of us.  The fact that my husband is open to working together to educate ourselves has made our journey much easier.

I know that I felt that I would be much more able to cope with everything by acknowledging the problems and dealing with them early, so we are prepared for what may come later.  I also felt this was the best way to know about any new services that are available.  I think we are both coping well also because we have met others going through the same experience and we can all learn from each other.

I have to commend the Alzheimer's Society of Brantford/Brant County on the programmes and services they offer.  My husband is in the Day and Stay programme each Thursday.  This gives him a support group where he can vent and learn more about strategies to cope with what he is experiencing.  I got to a support group once a month.  We both participate in the monthly breakfast programme.  As well, I was able to enjoy 2 days in September at the caregiver retreat.  Apparently, the Brantford Society is the only one that offers this service.  It gave all of us a chance to get away from it all and enjoy catered meals and all the activities that were offered - massage, reflexology, square dancing, and entertainment as well as lots of free time.

The advantage to accepting and dealing with issues early is that you can have peace of mind knowing you are doing all you can at the present time because you have prepared for the future.  For example, even though my husband had never wandered, he was very open to being registered in the "Safely Home" programme.  He knew it would make me feel more comfortable and I felt it was safer to have that protection before it was necessary.  He also decided to have a discussion with the family about issues that he may not be able to voice properly later on.

Unfortunately, not everyone is willing to take steps before they are required and I just feel that this puts you at greater risk.  I can empathise with those who are attempting to engage people early one.  A lot of people just don't want to deal with issues until they are forced to.

I think greater education would help the general public to realise that not everyone with this disease is housebound or unable to continue regular activities.  Most can continue to do activities they enjoy for a long time with the help of others.  In fact, when there is a group of people, it would be very difficult to determine who has memory loss, since it is generally not noticeable until the later stages of the disease.

Because of our early involvement, we were able to participate in the MAREP workshop in Toronto this November.  We were pleased to be able to express our ideas and have a chance to interact with others who are going through the same process.

Accepting My Diagnosis

Photo courtesy of Mary Beth Wighton
Dawn, Brianna, and Mary Beth
By Mary Beth Wighton
If you believe 2012 doomsday theorists, the earth as we know it will end in 4 days on December 21, 2012.  Whether it is from the end of the Mayan calendar or some incredible planetary collision, life on earth will end.  Television movies depicting the end play over and over again.   The news captures religious fanatics holding their signs high to “repent.”  It has made me pause and wonder.

I do not believe in 2012 doomsday.  I believe God has his own agenda. 

It is in such stark comparison I contemplate my own inevitable death.  Upon my diagnosis of FTD, I immediately went to my computer and began to research this foreign word.  As I read through the text of symptoms I eventually hit the words “Inevitably FTD will culminate in profound disability and death.” 

The average life expectancy is anywhere from 2-10 years with the mean of 8.  I reread this line of text numerous times.  Three months since my diagnosis, these words continues to sink in.

I've known for years, there was something seriously wrong with me.  I just didn't know what it was.  Finally, I had a diagnosis to this terrible thing.  My emotions have ranged from disbelief to anger to sadness. 

The one thing that has remained constant from the start is my desire to live life to its fullest and with dignity.  At the bottom of my calendar page, I have written the well-known line, “Live each day as if it's your last.”  But, what does that really mean?

Words are just that – words.  It is how we live those words that really matters.  Each day, I wake up and count my blessings and thank God.  I try to be more gentle with my words; tell my loved ones I love them; help out as much as I can; and not hesitate to take up people's invitations to an adventure.  I ask myself, am I correctly prioritizing things I have to complete?  I have begun to reach out to some dear old friends who I have lost contact with.  I have told special people in my life that they are special and my life is richer because they are in it.  I do not take these relationships for granted.  Laughter has become more important to me and I look to find and share things that will earn a smile.  I continue to work hard to ensure that my family is left in the best circumstances it can be.  I reach out to organizations that can help me move through challenges.  And ultimately, each day, I try to give as much as I can to help in the fight against dementia.

I ponder about what my purpose of life is.  Is helping in this fight it?  Regardless, I will continue to live each and every day the best I can.  I have accepted my diagnosis.  It is the helping of others to aid in their acceptance of my diagnosis that is paramount.

My great niece, Teighan, recently presented me with a beautiful painting she had done herself.  On it, she painted the words, “Carpe Diem.”   I have hung her painting up near the entrance of our home.  As each and every person enters, I wish for them  to join me in:  seizing the day and place no trust in tomorrow.

To read more about Mary Beth, please check out the Kitchener Post article from January 17, 2013.

Thanks for All Your Support At Our Alzheimer Awareness Event!

On Monday January 21st, 2013, MAREP held an Alzheimer Awareness event that was open to the UW community but also to our MAREP partners and general public.

We received an overwhelming response and although we opened a second room, we unfortunately had to turn some people away to meet fire regulations.  MAREP would like to thank everyone for their support at our event. 

We are so happy to have the opportunity to raise awareness and to highlight the important fact that life is not over after a person receives a diagnosis of Alzheimer's and/or a related dementia.  In fact, people living with dementia can continue to have very fulfilling and meaningful lives especially with the proper supports and a compassionate and caring society/community.

Living meaningfully was highlighted by all three of our guest speakers - Dr. Peter Whitehouse (PhD-MD), Ms. Ann Marie Wilson (family partner in care), and Ms. Mary Beth Wighton (person living with dementia).

To learn more about what happened at the event, please check out a full story covered in the front page of the local Record newspaper.

Carl Wilson, person living with dementia, advocate and MAREP Partner, and Dr. Sherry Dupuis, Director of the Murray Alzheimer Research and Education Program
If you would also like to learn more about any future upcoming events or conferences at MAREP, or even learn more about how you can become involved with our research projects, please go to our MAREP website at or contact Jessica at or 519-888-4567, ext. 36880.
Please stay tuned to our MAREP website and Blog for a video tapping of our Alzheimer's Awareness Event.
Again thank you to all for your continued support and help to build communities of care and support for those living with and/or affected by dementia!

Friday, 18 January 2013

We've found more room! New Spaces available for our Public Lecture and Exhibition

Registration for our Public Lecture and Exhibition on Monday January 21, 2013 has been re-opened.  Due to tremendous demand, we have found additional space!  Register Here! 

Spread the word!

2013 Alzheimer Awareness Month Event

Public Lecture and Exhibition

                When:       Monday, January 21st, 2013
10:00 am  -  12:30 pm  (includes light refreshments)

                Where:          William G. Davis Computer Research Centre
DC 1302 (lecture) and DC 1301 (exhibition)
University of Waterloo

This event is free and parking is available at a cost of $6  (coin or  credit card) in Parking Lot M

To register call 519-888-4567, Ext. 36880 or email
Space is limited!
Living Well with Dementia and Challenging the Myths
Dr. Peter J. Whitehouse, MD-PhD
Professor of Neurology, Case Western Reserve University, USA
Author of “The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis”
A Meaningful Life
Ann Marie Wilson
Family partner in care, Spokesperson and Advocate
Carpe Diem - Living Life to the Fullest with Dementia
Mary Beth Wighton
Person living with Frontotemporal Dementia, Spokesperson and Advocate

Displays by: MAREP, RIA, Alzheimer Society of Kitchener Waterloo, and much more!!!!

For more information including a map and directions, visit

Monday, 14 January 2013

Special Event hosted by Alzheimer Societies of Kitchener-Waterloo and Cambridge


Alzheimer Societies of Kitchener-Waterloo and Cambridge

Dr. J.B. Orange

Associate Professor and Director,
School of Communication Sciences and Disorders, Western University,
Associate Scientist, Lawson Health Research Institute

The Language of Dementia:
Communication Management in Dementia Care 

The forum will provide helpful information for families and healthcare providers supporting persons with dementia.
Tuesday, January 15, 2013
2:00 to 3:30 p.m.
Langs Community Health Centre
1145 Concession Rd., Cambridge
To register, call
Alzheimer Society of Cambridge

Tuesday, January 15, 2013
7:00 to 8:30 p.m.
Holiday Inn
30 Fairway Rd. S., Kitchener
To register, call,
Alzheimer Society of Kitchener-Waterloo

Monday, 7 January 2013

My Journey with Dementia - A Personal Story

By Mary McKinlay
In 2006, I went to our family doctor after not remembering how to put my dentures back in my mouth.  I told him about the confusion I had been experiencing for several years, and that it was getting worse.  After a CAT scan and testing, I was informed I had Alzheimer’s.  I was started immediately on Aricept, and several months later the drug Memantine was added.  The combination of these two drugs is letting me live an almost normal life.

My husband Jim and I spent hours researching on our computers to learn all we could about the disease.  We found a chat room online where I was able to chat to others on this same journey.  I found out that indeed I probably had many good years ahead of me.

I started keeping an online journal so I could share with my family and friends on how I was doing.  My website, located at, is now full of lots of helpful information as well as my journal.  I have between three and five thousand visitors to my website each week.  Hopefully they are getting some help there.

MAREP has been instrumental in creating a day of sharing for people with dementia and their care partners for the last few years.  I have been very fortunate to have been able to attend five of these Changing Melody forums so far and have actually been a keynote speaker at four of them.

Over the past six years, Jim and I have discovered lots of neat tricks to make our life work with my changing brain.  We now use headphones when watching TV, so when I've had enough input to my brain I can take my headphones off and enjoy the quiet.

I have earplugs I can use when we find ourselves in a noisy environment.  And when we're with a group of family or friends, we know that sometimes we need to find a quiet spot for me for a brain break.

I can still do most of the meal preparation, however usually use the slow cooker or microwave, and things don't get forgotten on the stove.  The use of a small food chopper solved my problem of getting my fingers in the way of the knife.  I seem to now have a one track brain, so I would concentrate on what I was cutting, and not where my fingers were.

Sometimes I struggle with having to make decisions, and in the mornings trying to decide what to wear uses up a whole bunch of brain power.  I've discovered if I hang my slacks and blouses on hangers in sets, I am saved having to make a decision.  I just grab any hanger and I'm ready to go.

While chatting with folks in the chat room, many times caregivers expressed their concerns because when they tried to continue on with their usual activities, their loved one ended up getting very anxious and upset, and the only way they could do these things was to use anxiety drugs to keep them calm.  We're finding that we have had to make major changes in what we do, and can't continue doing everything we used to enjoy doing together.  I think people will get more enjoyment out of life if they realize they have to adjust their thinking and their lives.

So my advice to you is.....KEEP IT SIMPLE.  Make changes as needed as the brain changes.  ENJOY EACH DAY AS BEST YOU CAN!!!
For more information about Mary, please check out her online journal  or you can see a video of Mary sharing her personal journey on the Alzheimer Society of Ontario's website at


Friday, 4 January 2013

January is Alzheimer Awareness Month! Come Join Us in Learning More and Making a Difference

2013 Alzheimer Awareness Month Event
Public Lecture and Exhibition

 When:     Monday, January 21st, 2013

                      10:00 am  -  12:30 pm  (includes light refreshments)


 Where:    William G. Davis Computer Research Centre

                      DC 1302 (lecture) and DC 1301 (exhibition)

                      University of Waterloo


This event is free and parking is available at a cost of $6 in Parking Lot M

To register call 519-888-4567, Ext. 36880 or email

Space is limited!
Living Well with Dementia and
Challenging the Myths
Dr. Peter J. Whitehouse, MD-PhD
Professor of Neurology, Case Western Reserve University, USA
Author of “The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis”
 A Meaningful Life
Ann Marie Wilson
Family partner in care, Spokesperson and Advocate

Carpe Diem - Living Life to the

Fullest with Dementia
Mary Beth Wighton
Person living with Frontotemporal Dementia, Spokesperson and Advocate

Displays by: MAREP, RIA, Alzheimer Society of Kitchener Waterloo, and much more!!!!
For more information including a map and directions, visit

Related Posts Plugin for WordPress, Blogger...