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Getting a dementia diagnosis – where do you start?

Getting a dementia diagnosis – where do you start?

It can start with something simple, like having trouble following your favourite recipe, or putting your car keys in the fridge. Maybe you’ve noticed small changes in your memory that are affecting how you do things day-to-day.

If you can’t quite remember things that should be straightforward for you, or if you notice changes in your mood or ability to communicate, make an appointment to see your family doctor right away.

Diagnosing dementia is a complex and difficult process. The first thing your doctor will do is try to rule out if it’s a treatable condition, like depression or even an infection.

By finding out what is causing your symptoms, you can get the right kind of care, support and access to treatments as early as possible.

Be prepared to start the conversation with your doctor:

  • Take the time to review the 10 warning signs of dementia. This is important because dementia is not a normal part of aging, nor is memory loss the only symptom.
  • Jot down the signs you’ve been noticing in yourself. When did these start? Have they changed over time? This information will keep your conversation focused.
  • Don’t be afraid to ask questions! Ask your doctor if your symptoms could be caused by another health condition.
  • Be sure to let him or her know about your medical history, including any medications you’re currently taking.
  • Ask your doctor to explain what tests you’ll need and how long these will take.
  • Will you need to see a specialist or a series of specialists? How will you need to prepare for these visits?

For more tips on getting ready for your doctor’s visit, download our Getting a diagnosis toolkit. It offers a whole list of questions to ask as well as detailed information about the warning signs and what you can expect during the diagnosis process.

And, if you’re concerned about someone else, we encourage you to pass our toolkit along.


Getting an early diagnosis helps you and your family take control of the situation, plan for future and live as well as possible with dementia. Learn more about the benefits of an early diagnosis

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.

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother, Bruna was officially diagnosed with Alzheimer’s disease in January of 2011. The disease was not unknown to her family. Three of her sisters died of complications resulting from this creeping and subtle sickness, as well as her paternal grandmother.

Not long after the second time she had become disoriented while driving and her ever increasing lapses in recall, I decided to take her to visit her doctor. What if she ended up hurting herself, or worse, someone else? I could never forgive myself.

“Well Bruna, I think we’ll have to send you for more tests to figure out why your memory is failing you. Until then I don’t want you driving. It’s too dangerous for you and the people around you,” the doctor explained.

The ride home was awful. “Now I can’t drive anymore. You’d better be prepared to take me wherever I need to go because now I can’t take myself!” The decibel level of her voice rose with every word.

I pulled into her driveway, relieved to be there. My mother exited my van and slammed the door, uttering one last declaration of disappointment at how I had betrayed her. I was drained, yet I could only imagine how she felt – to know that her independence would be taken from her. To think that it would render her less able to look after herself with every passing year. This was the beginning of my mother’s journey with Alzheimer’s.

I cannot stress enough how I agonized about taking her to her doctor, but I knew that the longer we waited, like any serious disease, the less likely we would be able to treat it effectively. In retrospect, we were lucky, because I knew the signs. Even though she presented different symptoms, my aunt had Alzheimer’s years earlier and I saw the horrible process first hand.

The most crucial piece of information I can pass on is that the signs of Alzheimer’s can be different for everyone and that everyone – spouses, sons, daughters, sisters and brothers, need to be informed and aware of the possible risk. Knowing the signs and taking charge of the situation by helping your loved one to visit a health care professional if you suspect issues with memory is the best thing you can do for them.

My mother has been fortunate enough to receive care from many people and organizations in the community – healthcare professionals, community care services and the Alzheimer Society. Our local Alzheimer Society helped us understand the disease and assist my mother in living with it and managing her life. She is still living independently with some assistance and she takes medication which has slowed the progression considerably.

Many have helped to lighten the load. We have spoken to compassionate, supportive and patient individuals from the Alzheimer Society who are willing to give of themselves to assist us and educate us about where we can turn for help. And for this we thank them.

My mother is living independently with Alzheimer’s Disease and she refuses to be its victim. Know the signs and get checked out as soon as possible.

Learn more about:

 

edy_grazianiEdy Graziani with her mother, Bruna

How a diagnosis helped my mom

How a diagnosis helped my mom

scan0002At first, it was small changes. My mother was losing things and getting on the wrong bus. But then I began to notice more unsettling changes. She wasn’t taking care of herself, slept a lot during the day and was becoming even more confused.

I knew something was wrong. I took her to her doctor. We got the always shocking, but ultimately expected news. She had dementia.

I felt mixed emotions. But knowing the source of my mother’s difficulties was a relief. And with that diagnosis came my resolution to help my mother remain active for as long as possible. Because I knew that if she didn’t use the abilities she had left, she would lose them quickly.

As a first step, I got her on medication to help with her dementia. But I wanted more, so I began sending her to a local day program every day. And then I got help for myself, with a personal support worker provided by my local Community Care Access Centre and by sending my mother to respite care to give myself much-needed breaks.

And what a difference this has made for both of us. The doctors are amazed at how well she is doing.   My mom is happy. She has a great time at the day program where she eats well and gets mental and physical stimulation. She even regularly sleeps through the night, something that any caregiver knows is a blessing.

I have advice for anyone who thinks they or their family member might have dementia: see your doctor. The sooner you know, the sooner you can act. It made all the difference for my mother.

To learn more about early diagnosis, visit our website.

sharon

Sharon Roszel

Caregiver