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Research Video Series: Introducing Stephanie Chamberlain

Research Video Series: Introducing Stephanie Chamberlain


Trained as a personal support worker in long-term care, Stephanie Chamberlain is currently pursuing her PhD at the University of Alberta. There, she is assessing the impact of court-appointed public guardianship on the health and care needs of long-term care residents. Stephanie is the Alzheimer Society Research Program’s first Revera Scholar.

It is essential that we improve quality of life and quality of care to those with Alzheimer’s disease and dementia because how we treat a life that has been lived is reflective of our essential humanity.
-Stephanie Chamberlain

Stephanie Chamberlain

Revera Scholar Doctoral Award in Alzheimer’s disease (Quality of Life) – $66,000
Project: Unrepresented older adults: The impact of public guardianship on resident health and care needs in long-term care

Read about more of our grants and awards recipients here.

Introducing the 2015 Alzheimer Society Research Program (ASRP) Community Representatives / Des représentants de la collectivité participent au Programme de recherche de la Société Alzheimer (PRSA)

Introducing the 2015 Alzheimer Society Research Program (ASRP) Community Representatives / Des représentants de la collectivité participent au Programme de recherche de la Société Alzheimer (PRSA)

This year the Alzheimer Society celebrates 27 years of funding research through the Alzheimer Society Research Program (ASRP). The peer review panel meetings were held in February 2015 in Toronto, Ontario, and included the role of Community Representatives.

Community Representatives are members of the general public who are not currently involved with research who are given the opportunity to comment on the intent, purpose and on the clarity of the language used within the lay summaries of research applications that are received by the Society. Their involvement in peer review serves as a mechanism for public accountability by providing feedback on the ASRP peer review process.

It is with great pleasure that we introduce our 2015 Community Representatives:

“I was given the chance to understand the peer review process and the Alzheimer society’s involvement in research when I reviewed as a community representative. Being a part of the process meant a lot to me. The different abstracts read were very helpful to me because it gave me hope about my husband who has MCI, some of which may help him someday.  Also, the doctors we met were all very professional and ethical, open and friendly. As a caregiver I found the peer review process to be a learning experience; I got to learn about interesting abstracts and research about MCI/Alzheimer’s disease/Dementia.

Funding research on Alzheimer’s disease and dementia is important to me because there is a need for early diagnosis, understanding the cause of Alzheimer’s and treatment for the different types of dementias. Hopefully my husband and children and others will benefit from this research.”

-Lydia Watts, 2015 Community Representative, Biomedical Peer Review Panel

Lydia is the primary caregiver to her husband, Bruce, who has Mild Cognitive Impairment. She is a retired medical technologist and now enjoys volunteering and her hobbies include beading and taking online courses.

Bruce-and-Lydia-Watts
“This has been a rewarding and interesting experience. It is encouraging to hear how much research and development there is to control the advancement and perhaps eventually cure this devastating disease. Everyone we met at this conference are very friendly, open and encouraging people all working together with a similar goal – to beat this disease and improve our quality of life. Having an opportunity to comment on the research left me feeling heard and understood for the input I was given the chance to offer.

As a person living with dementia I found the peer review process to be an important and worthwhile endeavour and time well spent.

Funding research on Alzheimer’s disease and dementia is important to me because research is finding a way to control and eventually cure Alzheimer’s and MCI is important now and for future generations.”

-Bruce Watts, 2015 Community Representative, Biomedical Peer Review Panel

Bruce is living with Mild Cognitive Impairment and is supported by his wife Lydia and family. He is a retired medical technologist. His hobbies include photography.

 

Gail“This has been a positive and encouraging experience. I am impressed with the variety of proposals and the thorough and detailed process used to make decisions. The discussions were clear and lively and people were patient yet challenging.

As a person living with dementia I found the peer review process to be encouraging and thorough.

Funding research on Alzheimer’s disease and dementia is important to me because I hope they will find a cure. As well it will provide different and new ways to deal with the disease. I am particularly interested in long term care.”

-Gail Reid, 2015 Community Representative, Quality of Life Peer Review Panel

Gail is living with Alzheimer’s disease. She formerly worked as a social worker, magazine editor and writer.

 

Sandi“I am honoured and pleased to play a small part on this panel.As a person living with dementia I found the peer review process to be very formative and interesting.

Funding research on Alzheimer’s disease and dementia is important to me because with the aging population there is a great need.”

-Sandi Matchett, 2015 Community Representative, Quality of Life Peer Review Panel

Sandi is living with dementia. She is a former graphic designer who enjoys water colour painting and playing tennis.

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Le Programme de recherche de la Société Alzheimer finance la recherche depuis maintenant 27 ans. Des représentants de la collectivité ont participé aux réunions des comités d’évaluation par des pairs, qui ont eu lieu en février 2015 à Toronto (Ontario).

Les représentants de la collectivité sont des membres du grand public qui ne participent pas actuellement à la recherche. Ils donnent leurs commentaires sur les intentions et les objectifs des projets de recherche soumis et sur la clarté du langage utilisé dans les résumés simplifiés. Leur contribution au processus d’évaluation par des pairs fournit un mécanisme de reddition de comptes auprès du public.

Nous sommes très heureux de vous présenter nos représentants de la collectivité pour 2015.

« À titre de représentante de la collectivité, j’ai eu la chance de comprendre le fonctionnement du processus d’évaluation par des pairs et les modalités de participation de la Société Alzheimer à la recherche. Cela a été très important pour moi de participer à ce processus. Les divers résumés que j’ai lus m’ont donné beaucoup d’espoir pour mon mari qui est atteint d’un trouble cognitif léger. Certains des projets soumis pourraient un jour ou l’autre lui venir en aide. Tous les médecins que j’ai rencontrés ont fait preuve d’éthique et de professionnalisme, en plus d’être très ouverts et sympathiques. Le processus d’évaluation par des pairs m’a permis d’enrichir mes connaissances à titre d’aidante. J’ai appris beaucoup à la lecture des résumés de recherche sur les troubles cognitifs légers, la maladie d’Alzheimer et les maladies apparentées.

Le financement de la recherche sur l’Alzheimer et les maladies apparentées me tient à cœur. Il est important d’établir rapidement le diagnostic et de trouver les causes de ces maladies afin de mettre au point un traitement. J’espère que mon mari, mes enfants et d’autres personnes pourront en profiter »

– Lydia Watts, représentante de la collectivité, comité d’évaluation par les pairs, volet biomédical

Mme Watts est l’aidante principale de son mari, Bruce, atteint d’un trouble cognitif léger. Technologiste médicale à la retraite, elle aime faire du bénévolat, broder et suivre des cours en ligne.

Bruce-and-Lydia-Watts
“« Cette expérience a été très intéressante et très enrichissante. L’ampleur des recherches menées actuellement pour combattre et guérir cette terrible maladie m’a beaucoup encouragé. Au cours de cette conférence, nous avons rencontré des gens sympathiques, ouverts et encourageants, qui travaillent tous ensemble à la réalisation d’un même objectif , à savoir améliorer notre qualité de vie et vaincre cette maladie. Cette chance que j’ai eue d’émettre mes commentaires sur la recherche m’a donné le sentiment d’être entendu et compris. À titre de personne atteinte d’une maladie cognitive, ma participation au processus d’évaluation par des pairs a été pour moi une activité très gratifiante.

Si nous voulons combattre l’Alzheimer et les maladies apparentées et en arriver un jour à les vaincre, il est important de poursuivre le financement de la recherche pour les personnes atteintes aujourd’hui et pour les générations futures. »

-Bruce Watts, comité d’évaluation par les pairs 2015, volet biomédical

M. Watt, technologiste médical à la retraite, est atteint d’un trouble cognitif léger. Il bénéficie du soutien de sa femme Lydia et de sa famille.

 

Gail« Cette expérience a été positive et encourageante. Je suis impressionnée par la variété des projets soumis et le processus minutieux mis en place pour prendre les décisions. Les discussions étaient animées et intéressantes, exigeantes et stimulantes.

La recherche sur l’Alzheimer et les maladies apparentées est importante pour moi parce qu’elle nous permettra de trouver de nouveaux moyens de combattre ces maladies et de découvrir un remède. Je m’intéresse particulièrement aux soins de longue durée. »

-Gail Reid, représentante du public 2015, comité d’évaluation par des pairs, volet qualité de vie

Mme Reid, qui est atteinte de la maladie d’Alzheimer, a été travailleuse sociale, rédactrice en chef d’une revue et écrivaine.

 

Sandi
« Je suis atteinte d’une maladie cognitive et je suis heureuse du petit rôle que je remplis au sein de ce comité.

Le processus d’évaluation par des pairs a pour moi été très formateur et très intéressant.

Le financement de la recherche sur l’Alzheimer et les maladies apparentées est important en raison des nouveaux besoins créés par le vieillissement de la population. »

-Sandi Matchett, comité d’évaluation par les pairs 2015, volet qualité de vie

Mme Matchett, représentante de la collectivité, est atteinte d’une maladie cognitive. Graphiste à la retraite, elle aime l’aquarelle et le tennis.

Quality of life research takes centre stage at the 2013 Canadian Conference on Dementia

Quality of life research takes centre stage at the 2013 Canadian Conference on Dementia

Earlier this October, 480 attendees gathered at the Weston Bayshore Hotel in beautiful Vancouver, British Columbia for the 7th Canadian Conference on Dementia. Dynamic speakers from Canada and the US known throughout the world were featured in 11 plenary sessions, 4 groups of 3 parallel sessions and 11 concurrent workshops over the 3 days; as well as 6 new and notable oral presentations from young investigators and 55 poster presentations which graced the upper halls of the hotel.

Dr. Sandra Black
Dr. Sandra Black, former ASRP Research Grant recipient

Day 1 began with a donor breakfast hosted by the Alzheimer Society of British Columbia. An intimate group of approximately 30 donors eagerly awaited the arrival of Dr. Sandra Black, Head of the Division of Neurology at Sunnybrook Hospital and Professor of Neurology at the University of Toronto. She shared her perspective on the importance of clinical research today and encouraged everyone to engage in heart healthy activities such as exercise and aerobics, reminding us that mid-life hypertension affects the brain and can contribute to Alzheimer’s disease. She also spoke about the importance of keeping socially engaged which will help the brain to remain active.

 

 

 

 

Dr. Robin Hsiung
Dr. Robin Hsiung, ASRP Research Grant recipient

Following her presentation, we had the opportunity to hear from Dr. Robin Hsiung, Assistant Professor of Neurology at the University of British Columbia and staff Neurologist at the University of British Columbia Hospital Clinic for Alzheimer and Related Disorders. Dr. Hsiung is also a 2013 Alzheimer Society Research Program (ASRP) Research Grant recipient. He articulately spoke about his current research, using MRI scans and biomarkers that measure physiological changes within the brains of those who engage in exercise therapy. This research will help to identify how exercise can be used to slow the impact of Alzheimer’s disease and dementia.

 

 

The focus of presentations later that evening was on the impact of music and art on dementia. Dr. Nina Kraus from Northwestern University spoke about music and the mind followed by Dr. Peter Whitehouse who discussed dementia and the therapeutic impact of the arts.

These presentations were followed by the poignant video “Alive Inside” which shares the story of a determined social worker who uses personalized music to unlock memories of individuals living with dementia.

Day 2 included compelling sessions like Developing and Implementing Provincial Alzheimer Strategies: Lessons Learned from the Quebec Alzheimer Plan by Dr. Howard Bergman of McGill University and the captivating Care Planning in Dementia: Who and How? presented by Dr. Paige Moorhouse of Dalhousie University.

The sessions for the day concluded with an intriguing debate between Dr. Peter Whitehouse and Dr. Randall Bateman entitled Early Diagnosis of Alzheimer’s Disease is Best Practice. After listening to the debate, the audience, through a round of applause, showed the greatest support for Dr. Bateman’s position, which was in favour of early diagnosis.

Joshua Armstrong
Joshua Armstrong, ASRP Post Doctoral Fellow

Day 3 was the final day of the conference. The new and notable oral presentations took place on this day, which featured post-doctoral fellow, funded by the Alzheimer Society Research Program, Joshua Armstrong, of Dalhousie University, who spoke about Frailty in Relation to Late-Life Cognition: Initial Results from the Honolulu-Asian Aging Study.

Also presented on this day was a symposium entitled: A Person-Centered Approach to Dementia Care, which was one of the main highlights of the conference. The panel included:

  • Dr. Elisabeth J. Drance, a geriatric psychiatrist from the University of British Columbia
  • Mary Schulz, Director of Information, Support Services and Education at the Alzheimer Society of Canada who spoke about the culture change initiative which is underway to make the person centred approach, “the norm” within long term care homes
  • Elizabeth Kelson, a post-doctoral fellow from the University of British Columbia who spoke about residents’ opinions and experiences of unstructured activities
  • Jim Mann an individual living with Alzheimer’s disease since 2007 and a Board member of the Alzheimer Society of Canada
  • Gary Grais, a retired professional engineer who provided his perspective as a caregiver to his wife Barbara who has been living with Alzheimer’s disease for the past 7 years.
Panel : A Person-Centered Approach to Dementia Care
Panel : A Person -Centered Approach to Dementia Care

 

This panel was the first of its kind within this conference as it allowed for the voice of an individual living with Alzheimer’s disease, Jim Mann as well as a caregiver, Gary Grais, to be heard They both shared their own personal experiences living with the disease.The symposium began with a poem which was read by Mary Shultz, entitled

 

 

 

Take my Hand – I Don’t Remember the Way” written by caregiver, Cher McGlynn

If I mix up my words and refer to the mailman as the ‘snowman’
Will you laugh at me, ridicule, or correct me?
If I tell you I have ‘chicken bumps’ all over my arms,
Will you know I mean goosebumps and that I’m cold?
If I look afraid and ask you where my mom and dad are
Will you reassure me or tell me that they died long ago?
If I’m crying or screaming because I am so frightened of the thunder
Will you console me or tell me to “Get to bed and get to sleep!”?
When I go to bed, will you leave me in the pitch black and shut the door
Or will you ask me or my family how I used to like to sleep?

Jim Mann, living with Alzheimer's disease
Jim Mann, living with Alzheimer’s disease

Jim eloquently spoke about his experiences living with the disease to date. He shared some examples of healthcare staff who would demand that he attend a medical examination alone, or insist that he write the date on medical forms by himself, at which point he had to remind them that he has Alzheimer’s disease, and requires assistance from his wife.

Gary Grais
Gary Grais, Caregiver

Gary also spoke about his personal experiences in providing support to his wife Barbara. He was brought to tears as he described the challenges that he has been faced with, where his wife’s condition has progressed to the point where they are no longer able to engage in meaningful conversation.  His closing message urged the audience to give their husbands and wives a big hug following the conference and to let them know how thankful we are for them, while they are still with us in body and in mind.

This extraordinary panel demonstrated the immediate need for a person-centred approach to be carried out within our medical practices and in real-world settings, for people like Jim, Gary and his wife Barbara. They received a standing ovation that morning, as the perspectives that they shared were a true reflection of the reality that is faced in dealing with this degenerative disease and it was a reminder to us that through a person-centred approach, great hope exists for us all. 

 

NaliniNalini Sen

Research Program Director

Alzheimer Society of Canada