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Announcing the top 10 Canadian dementia research priorities

Announcing the top 10 Canadian dementia research priorities

[Le texte en français suit l’anglais ci-bas.]

By Drs. Katherine McGilton and Jennifer Bethell

Over the course of the past year, we asked Canadians affected by dementia—either personally or through their work—for their unanswered questions about living with dementia, dementia prevention, treatment and diagnosis. This study, also known as the Canadian Dementia Priority Setting Partnership, set out to identify the top 10 dementia research priorities, and to share them with Canadian researchers and research funding organizations.

We thank the over 1200 participants who shared their insights. Thousands of questions were submitted and the shortlist was debated at an in-person workshop, held in Toronto on June 8-9, 2017.

Canadian Dementia Priority Setting Partnership workshop,
June 8-9, 2017, in Toronto

The workshop brought together 28 participants from across Canada—persons with dementia, family members, health and social care providers and members of organizations that represent persons with dementia. Participants worked in small teams and as a group to discuss each question and decide what matters most to them.

Here are the top 10 dementia research priorities, according to Canadians affected by dementia:

  1. What is the impact of stigmas associated with dementia and mental health issues on persons with dementia and their families? What are effective ways of reducing the stigma experienced by persons with dementia and their friends, family and caregivers/care partners?
  2. What can be done to support emotional wellbeing, including maintaining a sense of dignity, for persons with dementia?
  3. Among persons with dementia, what is the impact of early treatment on quality of life, disease progression and cognitive symptoms?
  4. How can the health system build and sustain the capacity to meet the health and social care needs of persons with dementia and their friend or family caregivers/care partners?
  5. What services, supports and therapies for friend or family caregivers/care partners of persons with dementia would improve or maintain health, wellbeing and quality of life for persons with dementia and their friends or family caregivers/care partners?
  6. After dementia is diagnosed, what would help persons with dementia and their friends, family and caregivers/care partners get the information, treatment, care and services they may need?
  7. What dementia-related skills and knowledge should health and social care providers have? What are effective ways of providing them with these skills and this knowledge? How can the number of health and social care providers who have these skills and this knowledge be increased?
  8. What enables the creation of dementia-friendly communities? What impact do dementia-friendly initiatives have on persons with dementia and their friends, families and caregivers/care partners?
  9. What would ensure implementation and sustainability of best practices for dementia care within and across health care settings, including effective approaches to providing person-centred care?
  10. Among persons with dementia, what are the effects of non-pharmacological treatments compared to pharmacological treatments on behavioural and psychological symptoms of dementia? Can non-pharmacological treatments replace, reduce or be used in conjunction with pharmacological treatments for managing behavioural and psychological symptoms of dementia?

The Alzheimer Society Research Program will use these results to help bring the voices of Canadians affected by dementia into the research agenda. These priorities will also be shared with researchers and other research-funding organizations in hopes of stimulating more research in these areas.

The Canadian Dementia Priority Setting Partnership was funded by the Alzheimer Society Research Program as part of the Alzheimer Society’s commitment to the Canadian Consortium on Neurodegeneration in Aging (CCNA). Special thanks to our Steering Group and partner organizations for their involvement and assistance in the study.


ANNONCE DES DIX PRIORITÉS DE RECHERCHE SUR LES MALADIES COGNITIVES AU CANADA

researcher
Par les Dres Katherine McGilton et Jennifer Bethell

Au cours de la dernière année, nous avons demandé aux Canadiens touchés par une maladie cognitive, soit personnellement ou dans le cadre de leur travail, de faire part de leurs questions sans réponses sur la vie avec une maladie cognitive, la prévention, le traitement et le diagnostic. Cette étude, aussi connu sous le nom du Partenariat canadien pour l’établissement des priorités sur les maladies cognitives, visait à identifier les priorités de recherche à l’intention des chercheurs et des organismes de financement.

Nous remercions les plus de 1 200 participants qui ont partagé leurs points de vue. Des milliers de questions ont été soumises et la liste présélectionnée a été débattu lors d’un atelier en personne qui a eu lieu à Toronto les 8 et 9 juin 2017.

Atelier du Partenariat canadien pour l’établissement des priorités sur les maladies cognitives, le 8 et 9 jun 2017 à Toronto

L’atelier a mis à contribution 28 participants de tout le Canada, dont des personnes atteintes d’une maladie cognitive, des aidants familiaux, des fournisseurs de soins de santé et de services sociaux, et des membres d’organisations qui représentent des personnes atteintes d’une maladie cognitive. Les participants ont discuté au sein de petites équipes et en commun de chacune des questions afin de décider ce qui est important pour eux.

Voici les 10 priorités de recherche les plus importantes selon les Canadiens touchés par une maladie cognitive :

  1. Quelles sont les répercussions de la stigmatisation entourant les maladies cognitives et la santé mentale sur les personnes atteintes d’une maladie cognitive et leur famille? Quels sont les moyens efficaces de réduire la stigmatisation vécue par les personnes atteintes d’une maladie cognitive, leurs amis, famille et aidants/partenaires des soins?
  2. Que peut-on faire pour soutenir le bien-être émotionnel, notamment le sentiment de dignité, des personnes atteintes d’une maladie cognitive?
  3. Quelles sont les conséquences du traitement précoce sur la qualité de vie, la progression de la maladie et les symptômes des personnes atteintes d’une maladie cognitive?
  4. Comment le système de santé peut-il développer et maintenir ses capacités de manière à répondre aux besoins des personnes atteintes d’une maladie cognitive et de leurs amis ou aidants familiaux/partenaires de soins en matière de soins de santé et de services sociaux?
  5. Quels services, appuis et thérapies à l’intention des amis et aidants familiaux/partenaires de soins des personnes atteintes d’une maladie cognitive permettent d’améliorer ou de maintenir la santé, le bien-être et la qualité de vie des personnes atteintes d’une maladie cognitive et de leurs amis, ou famille et aidants naturels/partenaires de soins?
  6. Une fois la maladie cognitive diagnostiquée, qu’est-ce qui aiderait les personnes atteintes et leurs amis, famille et aidants/partenaires de soins à obtenir l’information, les traitements, les soins et les services dont ils pourraient avoir besoin?
  7. Quelles compétences et connaissances devraient posséder les fournisseurs de soins de santé et de services sociaux dans le domaine des maladies cognitives? Quels moyens efficaces pourrait-on utiliser pour leur transmettre ces compétences et connaissances? Comment augmenter le nombre de fournisseurs de soins de santé et de services sociaux qui possèdent ces compétences et connaissances?
  8. Qu’est-ce qui facilite la création de collectivités amies des personnes atteintes d’une maladie cognitive? Quelles sont les conséquences de ces collectivités sur les personnes atteintes d’une maladie cognitive et leurs amis, famille et aidants/partenaires de soins?
  9. Qu’est-ce qui assurerait la mise en application et la viabilité des meilleures pratiques en matière de soins dans les établissements qui accueillent des personnes atteintes d’une maladie cognitive, y compris en ce qui a trait aux soins centrés sur la personne?
  10. Quels sont les effets des traitements non pharmacologiques à comparer aux traitements pharmacologiques sur les symptômes comportementaux et psychologiques des personnes atteintes d’une maladie cognitive? Les traitements non pharmacologiques peuvent-ils remplacer, réduire ou être utilisés en association avec les traitements pharmacologiques pour la gestion des symptômes comportementaux et psychologiques des maladies cognitives?

Le Programme de recherche de la Société Alzheimer utilisera ces résultats pour faire entendre la voix des Canadiens touchés par les maladies cognitives dans les futures décisions en ce qui a trait à la recherche. Ces priorités seront également transmises aux chercheurs et aux autres organismes de financement dans l’espoir de stimuler la recherche dans ces domaines de prédilection.

Le Partenariat canadien pour l’établissement des priorités sur les maladies cognitives a été financé par le Programme de recherche de la Société Alzheimer dans le cadre de son engagement envers le Consortium canadien en neurodégénérescence associée au vieillissement (CCNV). Nous remercions tout particulièrement notre groupe d’orientation et les organisations partenaires pour leur participation et contribution à cette etude.

Nightmares or the Orange Pill

Nightmares or the Orange Pill

I’m tired this morning. The lingering affects of my nightmares stays with me.

One of the characteristics of Frontotemporal dementia is sleep disturbances. In addition to this I have been diagnosed with REM sleep behavioural disorder. This “… is a disorder in which you physically act out vivid, often unpleasant dreams with vocal sounds and sudden, often violent arm and leg movements during REM sleep.”
Normally you don’t move during REM sleep. About 20 % of your sleep is spent in REM sleep, the usual time for dreaming, which occurs primarily during the second half of the night. (Mayo Clinic)

REM sleep behaviour disorder often may be associated with other neurological conditions such as Lewy body dementia, Parkinson’s disease or multiple system atrophy.

I have had this disorder for about four years; that means prior to my diagnosis of Frontemporal dementia (FTD).
The other distinct characteristic of this is that you usually remember the nightmare(s) unlike many dreams.
Although I had a diagnosis, I choose not to take any suggested medications to help the symptoms. About a year ago, that changed as my nightmares were more frequent and frightening.

My doctor put me on 0.5MG of Clonazepam. Yes, medication from the “pam family.” Clonazepam often used to treat anxiety is also the traditional choice for treating REM sleep behaviour disorder.

However, in people with FTD, benzodiazepines have been associated with an increase in behavioural challenges and impair both memory and pschomotor skills. Use can result in reduced inhibition and impaired judgement. Simply put Clonazepam should be avoided.

I’m sure you can see the conundrum. To take or not to take. That is the question!

My daily medication is taken via a blister-pack. The clonazepam is not included in it. Every night as I take my blister-pack medication, I have to also open up the pill bottle for it.

Last night I choose not to take it. This is the second time this week. Why not? I keep hoping to take less medication. I keep thinking maybe I don’t need to take it anymore. But I’m promptly reminded why I do need to take it. Without it comes the nightmares. Terrible nightmares.

Although clonazepam is not suggested for people with dementia, I’ve made a choice to include the orange pill in my daily medication. Without it, the monsters come out and I can be heared yelling “Help me….”

Mary Beth Wighton is a blogger living with Frontotemporal dementia. If you want to subsribe to her blog or get in touch with her for any reason, send her an email (mbwighton@hotmail.ca).

fdd8c873df2214bMary Beth Wighton

Blogger and dementia advocate

What I learned caring for Grandma

What I learned caring for Grandma

It is difficult to understand Alzheimer’s disease until you are living with someone who has it. For me it was when my Grandma got it. She had lived with us for my entire life, and played a huge role in my upbringing.

First it was the little things, simple tasks that we take for granted, such as preparing a meal. While I could deal with changes like that, the hardest part was accepting that someone who had always protected and cared for me had suddenly become someone I had to take care of.

For a long time, I wanted to ignore her struggles, hoping that if I closed my eyes to the changes happening right in front of me, I could prevent them from happening altogether. But I soon realized that with a progressive disease like Alzheimer’s, change was inevitable. Knowing that her condition would deteriorate gave me the strength to overcome my own fears and help her.

And helping care for her only brought us even closer. Although her behaviour changed, her identity remained and she was still a person like everyone else. While many of her memories were no longer accessible, I could still remember for her. And sometimes, she would remember too.

For many people, a serious disease like Alzheimer’s becomes an emotional fork in the road. You can choose to turn your back on someone or you can choose to embrace them.

It can be far too easy to turn our backs on those who are suffering, particularly for young people, who may consider themselves too far removed from the suffering of the elderly. However, it is important for young people to face the challenge and look on dealing with the disease as part of their own personal road to growth.

Caring for my grandma has helped give me amazing insight into the struggles of those diagnosed with Alzheimer’s disease, and I truly hope I can use this knowledge to help others, both the patients themselves, and those who have yet to have any first-hand experience with the disease.

Want to share your story? Contact Ryan MacKellar (rmackellar@alzheimeront.org).

Andrea Shanmugarajah

Volunteer blogger

 

I have what? Frontotemporal dementia?

I have what? Frontotemporal dementia?

As I drove us to the 9:00 a.m. meeting with Dr. Didyk a geriatrician, many thoughts ran through my head. Here we go, another appointment with another doctor. One more stupid test. I hate when they ask me to write down the clock time because I know what time it is. I’m looking forward to my Timmy’s coffee.

Once Dawn and I arrived at the hospital, we grabbed a coffee and headed off to the waiting room of the gerontology area. I asked myself, “How can I only be 45 years old and be sitting here?”

Within minutes we were led into the examination room and the nurse arrived. Same old, same old. It really bothered me that after years of battling serious depression, memory loss and behavioural changes, no one has provided me with a sound medical diagnosis. That was all about to change.

Nurse Julie began the mini–mental state examination (MMSE). Sure enough, there were the questions about time. I uttered to her that I don’t have a problem with time. We continued on. Finally, the last of 30 questions lay in front of me. My mind was tired and it had become hard to stay focused. I didn’t have the brain power to answer any more questions – we were finished. After asking Dawn and I a few more questions about my health, she disappeared to tally the results.

Soon, the door opened and Nurse Julie appeared with Dr.Didyk. Everyone sat down.
The doctor immediately started to discuss the results of the MMSE. Six months ago, I had taken the same test and scored 24. Today, my score was 18 – an obvious, significant decrease. I’m not sure of all the things she discussed, but I do remember this: “You have Frontotemporal Lobe Dementia or FTD.”

Whoa…. no one has ever used those words before. I knew I was cognitively impaired but what was this FTD thing?

The doctor went on to explain more about FTD including that my amount of education will help. More blurred talk. FTD is a rare form of dementia and is incurable. Dawn and I looked at each other. Could this really be happening? More blurred talk. You will not be able to drive anymore effective immediately.

Whaaaattttt? O.K. This is now serious. More blurred talk.

I stopped hearing the rest of the conversation. The only thing I could hear in my head was, “You can’t drive.” You don’t have a driver’s license!” I started to see red. I flew out of my chair and threw some papers in the garbage. I stormed out of the office trying my best to slam the door shut. I tried a few times.

I continued on to the hospital hall and stopped. I began to pace up and down mumbling to myself. How could this be? How can I have dementia? How can my license be removed? How can my license be removed? How can I have dementia? How can my license be removed? How can my license be removed? How can I have dementia? My head was in a swirl.

I continued to pace. My cell phone rang and it was Dawn asking where I was, if I was o.k. And for me to come back into the room. No! I’m not coming back into the room because I don’t want to hear anymore. I continued to pace.

Eventually, Dawn came out of the examination room and approached me in the hall. We said nothing and I handed my car keys to her. We headed out towards the car. Dawn proceeded to take my usual seat at the wheel and I took her usual seat as a passenger.

FTD had changed our lives forever.

This article was previously posted on the Alzheimer Society of London-Middlesex blog. Read more from Mary Beth.

fdd8c873df2214bMary Beth Wighton

Person living with dementia