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Living well…right to the end

Living well…right to the end

May 7 – 13, 2017 is National Hospice Palliative Care Week. Mary Schulz, Director of Education at the Alzheimer Society of Canada discusses some of the misconceptions about palliative care and why it’s important to have conversations about end-of-life.

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Up close and personal with Dr. Dawn Guthrie

Up close and personal with Dr. Dawn Guthrie

I was able to help care for my father-in-law in the last year and a half of his life and I have to say it was a real eye-opener.

He had dementia – probably related to a stroke. But here was someone who had been very, very sharp and very independent who increasingly needed more of our help in terms of meals, housework and making sure he took his medications correctly.

We were very blessed in the sense that we were six adults – one of whom was a nurse. But even with that level of support, I saw just how demanding it is.

I don’t think until you do it, you really understand. You see the person you’re caring for in a different way. You watch as they become someone else. It’s difficult to see that. I watched my husband and his brothers struggle to help their dad. They wanted to help of course, but they wanted him to be able to do things on his own because that was who he was – a smart, independent man.

That experience helped me understand care giving from another angle. You can read about it, or talk about it to other people. But it’s not the same thing as day in day out, being responsible for another person, and knowing you might have to drop what you are doing at any given time.

I hope the research I do into caregiver burden will be helpful in a tangible way. That it gives home care professionals the kind of information they need quickly so that it helps them provide the best possible care to the clients they serve and their families.

I want caregivers to know they are important. They are valuable. We want to make sure they get the support they need as quickly as possible.

Quality of life researchers like Dawn need your support. Please donate.

Learn more about other researchers our donors support.

Dawn G (Bigger)Dr. Dawn Guthrie, Wilfred Laurier University

Alzheimer Society Research Program grant recipient

Up close and personal with Dr. Frank Rudzciz

Up close and personal with Dr. Frank Rudzciz

I’ve loved robots for as long as I can remember. When I watched Star Wars as a kid, I didn’t want to be Luke Skywalker or Han Solo – I wanted to be the guy who built R2-D2. So I am thrilled that today that what was once science fiction is becoming reality. Google is building cars that can drive themselves, and the best chess and Jeopardy! players in the world are computers from IBM.

I’m especially enthusiastic about the potential for using robots and artificial intelligence in healthcare. I really started seeing that potential when I was doing my PhD in computer science at the University of Toronto, when I started working with speech pathologists, rehab scientists, and research participants. These people really opened my eyes to what it means to live with speech problems, from cerebral palsy to the linguistic aspects of dementia.

Fully 10 per cent of the population has a speech disorder of some kind, of varying levels of severity. That’s not fair, and I believe that we can use artificial intelligence to help. I want to improve the independence of people, to let them express themselves without having to talk through an intermediary.

My group has made some wonderful progress recently – some of our software can analyze a person’s voice to diagnose Parkinson’s disease, for instance, often more accurately than human experts.

This is just the beginning. My goal is to create an artificial conversational partner that is entirely devoted to effective communication focused on an individual’s specific needs. This is perhaps most important for people with Alzheimer’s disease and dementia.

In the way that a cane is a simple technology that helps us to stand, I believe our system can be a technology that helps us to understand.

Quality of life researchers like Frank need your support. Please donate.

Learn more about other researchers our donors support.

Frank R (Bigger)Dr. Frank Rudzciz, Toronto Rehabilitation Institute

Alzheimer Society Research Program grant recipient

Up close and personal with Dr. Krista Lanctôt

Up close and personal with Dr. Krista Lanctôt

I remember very clearly that moment when I knew what I wanted to do for my PhD. It was 1994 and I was visiting a long-term care facility as part of my studies. I met some really agitated patients with dementia. When I asked the doctor with me what caused the agitation in some patients but not others, he said no one really knew.

I thought to myself we need to understand this. There has to be a better way. So I decided I was going to study the role of a brain chemical called serotonin in agitation and see if there was a way to target it to give people relief.

While we’ve made a lot of progress since 1994 and have a wider range of treatments, there is still so much more we can do to better help those suffering with agitation.

When I meet agitated patients during my research I really feel for them. Their lack of happiness and unrest is just so obvious. But because each brain is different, one size does not fit all in terms of treatment. I hope that when I retire I will have helped come up with better medications for a wider range of people with Alzheimer’s disease.

I also want to make a difference in people’s lives outside of my research. I think it is important to take time to talk to them about what they are feeling and reassure them and their caregivers that their behaviour isn’t their fault. It’s the underlying disease that causes agitation. I hope that too makes a difference.

Learn more about Dr. Lanctôt’s research or how to do donate in support of bio-medical researchers like her.

Krista L (Bigger)Dr. Krista Lanctôt, Sunnybrook Hospital

Alzheimer Society Research Program grant recipient

Caregivers: take care of yourselves

Caregivers: take care of yourselves

My name is Susan Bithrey. I am a caregiver.

My life has been transformed since my husband Reg was diagnosed with early-onset Alzheimer’s disease.

In September, which is World Alzheimer’s Month, we learned that 35 million people around the globe have a diagnosis of Alzheimer’s disease or another dementia. But behind these diagnoses are those who are thrust into the role of caregiver. A new report from Alzheimer’s Disease International highlights their ever growing ranks and how caregivers worldwide lack proper support.

If you took up the mantle to care for someone with dementia , thank you! But in drawing attention to important issues involving caregiving, I encourage you all to take care of yourselves. Otherwise, you’ll become stressed and end up with illnesses of your own.

You need to keep in touch with friends and family. A quick coffee with someone did much to restore my good spirits when I was feeling isolated. Yes, personal time is hard to come by, but social breaks are so important.

Join a support group offered by your local Alzheimer Society. They are amazing for providing a space where other care partners join me to talk about the ways we all cope with our spouses’ dementia. Sometimes, to share is to heal.

Finally, take care of your health. Eat well and exercise as much as you. Get the person you care for involved as well. I have worked hard to keep our days filled with activities that will keep us fit and outdoors as much as possible, and we are both much better off because of it.

To close, I would like to call on anyone who has a friend or family member providing care to do something for them. Offer to help with some household chores, to look after their family member for a few hours or just call to offer a kind ear. Often it’s the smallest gesture that can make all the difference.

Want to learn more about the Alzheimer Society of Ontario’s World Alzheimer Month Campaign? Visit our website for further details and what you can do to help people with Alzheimer’s disease and their caregivers.

reg-togetherSusan Bithrey

Caregiver

Tips for visiting someone with dementia

Tips for visiting someone with dementia

If you’re planning to visit someone with dementia, do you wonder, “What’s the point of visiting when they won’t even remember?” But just like us, people with dementia enjoy spending time with family and old friends.

Susan Bithrey is a caregiver who has seen how beneficial visitors are to her husband Reg, who has early-onset Alzheimer’s disease.  When Reg was still living at home, the couple’s sons visited whenever they could from Edmonton and Burlington and took part in activities such as skiing and fixing sports cars, some of Reg’s long-time hobbies.

When Reg moved to a long-term care home, his family still visited. One Christmas their grandson Landyn arrived with a Christmas tree and a plush soccer ball.  After a game of catch, Landyn whispered to Susan, “Look at how well he’s catching, Nana!”

But when Reg’s condition deteriorated, Susan still tried to keep people coming. “He remembers, especially peoples’ faces. He has a sense of who you are and will say ‘oh’ and smile. Although he forgets soon afterwards, a moment of recognition passes like a ray of sun breaking through a cloudy sky.”

When Reg’s sons come, they can’t do the same sorts of activities they once enjoyed. So they take him out walking, hold his hand and spend time with him. And it helps. Sometimes, if they pass the school where Reg used to teach, he will say, “I remember. I was there.”

Here some other ways to make the most out of your visits:

  • Visits between a half-hour and an hour are best, especially for those who tire easily.
  • Give a manicure, massage hands and feet with cream, give a facial, shave or apply make-up. Such activities help the person with dementia feel cared for.
  • Attend religious services together
  • Help with phone calls, sending birthday cards and gifts.
  • Create a small herb garden in window still pots.
  • Go for a walk or a drive together.
  • Look through family pictures. Be sure to say “tell me more” when they talk about a memory.
  • Listen to music and sing along to old favourites.
  • Read out loud.
  • Bring a child or pet along to watch.

 

Do you have any favourite activities from visiting your friend or family member? Share them below.

For more ideas on visiting someone with dementia, visit our website.

Alzheimer’s disease caregivers needed for research survey

Alzheimer’s disease caregivers needed for research survey

surveythumbCaring for a person living with Alzheimer’s disease can be a challenging task. There are assistive technologies to help people with Alzheimer’s and their caregivers; however, many of these are not very useful. The University of Toronto is conducting a study, funded by the Alzheimer Society of Canada, to better understand the needs of people with Alzheimer’s disease and their caregivers — and what would make technologies more useful to them.

Bing Ye, Project Coordinator at the Intelligent Assistive Technology and Systems Lab in Toronto explains, “Assistive technology is defined as any item or piece of equipment that can help a person with a physical, cognitive, or sensory disability complete various tasks and activities.  It can be categorized as high-tech and low-tech devices.”

“In our study we are focusing on Intelligent Assistive Technologies (IAT), such as smart home systems. An example could be a device that automatically recognizes that a person with dementia has forgotten to take his or her medication and then provides that person with a reminder to do so.”

“The results from the survey are expected to help us determine the needs of caregivers and people with dementia for such technologies, and how different social factors, such as age, education and cultural backgrounds may impact their needs for assistive technologies.  By understanding the needs of caregivers who are caring for people with dementia, it can help technology developers better build and design assistive technologies in the near future so that the technologies can become more usable for users.”

IATSL is currently looking for unpaid (family and/or friends) caregivers to share their experiences with using technology to help care for someone with Alzheimer’s through an online survey. The survey should take about 30 minutes to complete.

If you are an unpaid (family and/or friends) caregiver who:

1) is currently taking care of people with Alzheimer’s disease;
2) provides care at least 7 hours/week, and;
3) can speak, listen and write English or French fluently.

You can complete the survey online by visiting:  www.iatslsurvey.org

The survey can also be completed through mail, over the phone, or in person (if you are in the Greater Toronto Area). To choose one of these options, please contact the study’s research coordinator, Bing Ye, at bing.ye@uhn.ca or by telephone at (416) 597-3422 ext: 7910 or 1 (888) 220-0280.

The Alzheimer Society Research Program: Helping research happen across Canada

The Alzheimer Society Research Program: Helping research happen across Canada

In January and February of this year, scientists from across Canada and the United States descended upon Toronto to participate in the annual peer review meetings of the Alzheimer Society Research Program (ASRP). Their task: to critique research proposals that had been submitted to the ASRP by Canadian students, young investigators and established researchers; and to decide which projects will be funded by evaluating them on the basis of scientific merit, novelty and relevance to Alzheimer’s disease and other dementias.

As I sat there listening to both the Biomedical and Quality of Life panels debate topics that would make many of my former professors shed a proud tear, I thought to myself: I’m so glad they know what they’re talking about. The excitement, breadth of knowledge and compassion that panel members bring to the table each year is infectious. It makes me want to run to the nearest university, get a PhD, become an Alzheimer’s researcher and change the world.

There is an obvious hunger for dementia research. This is evidenced by the fact that

  • the number of applications to the ASRP grows each year
  • there are new investigators entering the field from other disciplines
  • many of the scientists we have funded re-apply to the program and
  • we receive applications the world over, from students who want to come to Canada to study.


What is obvious as well is that there is not enough money to fund this research.

This year, the ASRP will fund 38 investigators, investing a record $4 million, including $1 million from the help of our partner, Mother Parkers Tea & Coffee. With the additional help of the Firefly Foundation and Pacific Alzheimer Research Foundation, the total will grow to $4.5 million. We are proud of this achievement and hope to keep the momentum going so that one day, each researcher seeking funds for a worthy project will have a chance to make his or her own contribution to the field.

Wouldn’t that be something?

Learn more about each of the 2013 ASRP recipients or find out more about the ASRP at alzheimer.ca/research.

kayaKaya Borowska
Coordinator, Alzheimer Society Research Program