Alzheimers discussion, March 17

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Alzheimers discussion, March 17

A forum for discussing a troubling illness

Good evening everyone. Rebecca Lindell here. I worked with Christina on the Broken Connections series.
by Rebecca Lindell3/17/2011 9:32:57 PM
Hi Rebecca. Welcome! Conversation will get underway shortly. In the meantime, if you have any great links or stories to post please do so.
by rdruzin3/17/2011 9:33:59 PM
To start I just want to remind everyone that part four of our series is airing within minutes on Global National.
by Rebecca Lindell3/17/2011 9:35:26 PM
Broken Connections
Welcome everybody, thank you to our live blog. There has been a tremendous response to our series, looking forward to your questions.

Christina Stevens
Global National News
by christina.stevens via email edited by Heather Loney 3/17/2011 9:35:45 PM
If you missed any of the other three stories, you can check them out online at: www.globalnews.ca
by Rebecca Lindell3/17/2011 9:36:18 PM
Christina, I have a question for you to start us off tonight. What surprised or interested you most when you were putting together the series?
by Rebecca Lindell3/17/2011 9:37:59 PM
Christina here:
What surprised me the most is the stigma still attached to Alzheimer's. I was really taken back when those diagnosed with Alzheimer's and some caregivers told me they have lost friends over this. It seems that people don't understand it and want to avoid it in some way. Hopefully with our series we can get the conversation going.
by christina.stevens via email 3/17/2011 9:41:15 PM
What impressed me the most is how incredibly strong so many caregivers are. In many cases they have had to quit work to care for their loved one and it is truly a 24/7 job. They are patient and kind and brave.
by christina.stevens via email 3/17/2011 9:45:02 PM
A poll done by the Alzheimer Society a few years ago showed that 81 per cent of Canadians feel like they would be looked down upon or treated differently if they were diagnosed with Alzheimer's. And 46 per cent of the respondents know someone with the disease.
by Rebecca Lindell3/17/2011 9:46:16 PM
I agree with you about caregivers. I was also struck by their creativity.
by Rebecca Lindell3/17/2011 9:47:13 PM
So many people told me the unique ways they found to work around the disease, connect with their loved ones and serve their needs. For example, one woman's husband wanted to take a shower, but kept forgetting to use soap. Still he didn't want any help. So his wife filled up a squirt bottle with soap, stood on the other side of the shower curtain and sprayed him once in a while. It allowed him to keep his independence while staying clean.
by Rebecca Lindell3/17/2011 9:49:16 PM
A similar example is Dolores Hay in part two of the series.
by Rebecca Lindell3/17/2011 9:49:44 PM
Question 1: Rebecca and/or Christina, in the blog the other night many people said they have problems teaching relatives with Alzheimer's how to use table utensils. Is that something you have come across in your research?
by rdruzin3/17/2011 9:52:13 PM
bill dalziel,geriatrician entering the blog
by wbdalziel3/17/2011 9:55:25 PM
Hello Bill. Welcome!
by rdruzin3/17/2011 9:55:44 PM
RE Question 1: Rebecca here: I didn't come across that exact situation when speaking with caregivers, but all of them spoke to the need to troubleshoot constantly. Many people mentioned the value of caregiver support groups in testing out and sharing ideas for coping with lost skills or changes in routine and personality.
by Rebecca Lindell edited by rdruzin 3/17/2011 9:55:47 PM
Question 2: Hi Bill. Thanks for being here tonight. I worked with Christina Stevens on the series and I found that many people were lost when they first get an Alzheimer's diagnosis. What are the top three questions to ask your doctor after you are diagnosed with Alzheimer's?
by Rebecca Lindell edited by rdruzin 3/17/2011 9:57:59 PM
37%of canadians have a 'personal' connection to dementia so this is close to the tipping point to get over the stigma and get on with ACTIONS
by wbdalziel3/17/2011 9:58:11 PM
RE Question 1: I didn't talk to anyone with that problem specifically, but difficulty performing familiar tasks is one of the things Alzheimer's patients struggle with. Caregivers have been telling me that often it's with that kind of thing that Alzheimer's patients become the most frustrated. That's when the creativity on the part of the caregiver comes into play. Many have found by going to support groups they were able to share ideas on the best approach.
by christina.stevens via email edited by rdruzin 3/17/2011 10:00:04 PM
Hi. I work very closely with Alzheimer Patients as I am a PSW. I work in a Hospital for Severe and Aggressive Patients as well as doing home care. My heart goes out to the families and the patients wishing there was more that I can do for them on a daily basis.
by Kathy edited by rdruzin 3/17/2011 10:02:41 PM
RE Question 2: Top three questions are: what type of dementia is it [there are 5 common dementias [alzheimer,stroke related,frontotemporal,lewy body and mixed ] that will /should ensure an appropriate assessment including looking at meds/excluding thyroid and other medical problems ..next is can i get a referral to the alzheimers society and is homecare indicated [ a big USA study showed that if caregivers got appropriate education and home support they could keep their loved ones at home an extra 1.5 years ..and finally ..i want my loved one started on a drug like aricept [ only 25 % of alz sufferrers in canada get atrial with a drug even though the average benefit is 1 years delay in progression and 25 % do even better]...bill
by wbdalziel edited by rdruzin 3/17/2011 10:03:09 PM
Rebecca here. Thanks Bill. Here's another great resource for newly diagnosed Alzheimer's patients. It's a documents Alzheimer's patients put together for people with Alzheimer's. www.alzheimer.ca
by Rebecca Lindell3/17/2011 10:06:14 PM
Question 3: Kathy, is there a high burnout rate among caregivers such as yourself, who work with aggressive patients?
by rdruzin3/17/2011 10:06:57 PM
Family and friends would probably be especially interested in the last section entitled "A Message to Family Members and Friends."
by Rebecca Lindell3/17/2011 10:07:29 PM
Question 4: Bill, tonight on Global National Christina reported that Canada has no national plan on Alzheimer's. Can you shed some light on how does a lack of national strategy impact the doctors and nurses working to care for people with Alzheimer's?
by Rebecca Lindell edited by rdruzin 3/17/2011 10:08:57 PM
RE: Question 3: Yes there can be, as you have to be on your toes 24/7 because of their unpredictability. It is more apt that they are going to injured because an Alzheimer patient has unbelievable strength.
by Kathy edited by rdruzin 3/17/2011 10:12:08 PM
ALZHEIMER FACT: Australia, Norway, the Netherlands, France, Scotland and the United Kingdom have specific plans or frameworks for dealing with Alzheimer's and dementia. Canada does not.
by Rebecca Lindell3/17/2011 10:13:44 PM
RE Question 4: the lack of a national strategy means the lack of consistent new programs FUNDED..no strategy means no funding and yes tomns can be done by coordination but more money is needed ..the great IRONY of course is that money spent up front on screening,assessment,education,dementia drugs for all alz persons not just 25 % ..ALL these would save the system WAY more BUCKS than we currently waste by have elderly patients stuck in emergency rooms and blocking beds stuck in acute care hospitals BUT CEOs of hospitals think more nursing home beds is the answer ..if we educated / supported and treated alzheimers better people could stay home with better function, more joy and more quality of life and SAVE the system..maybe one of the political p[arties will FINALLY realize that seniors account for almost 40 % of all VOTES cast ..HEAR THEM ROAR!!!!!!!..dr bill
by wbdalziel edited by rdruzin 3/17/2011 10:14:44 PM
Question 5: Bill, how do medications today compare to medications from, say, 10 years ago? Has there been much improvement?
by rdruzin3/17/2011 10:18:23 PM
Question 6: Kathy, many more Canadians are being diagnosed with early onset Alzheimer's. In fact, during the course of researching this series I spoke with a 25-year-old woman who's mother was diagnosed when she was in her late 40s. That meant the woman was only about 13-years-old. Are there any resources out there for teens and young adults who's parents are diagnosed with Alzheimer's?
by Rebecca Lindell edited by rdruzin 3/17/2011 10:20:55 PM
RE Question 5..there are 2 types of meds ..the first set were avail 10 years ago [ an example would be aricept].these work by pumpimg up the levels of acetycholine[ a neuro or brain transmitter= messenger ..levels are low in alzheimers...the second med is memantine which works by damping down another neurotransmitter {GABA]
by wbdalziel edited by rdruzin 3/17/2011 10:23:24 PM
Question 7: Bill, we haven't seen any new drugs approved in years. Why are things taking so long?
by Rebecca Lindell edited by rdruzin 3/17/2011 10:24:41 PM
I totally agree with Dr. Bill that keeping these patients at home. Seeing them on both sides of the spectrum they definitely do manage better in their own home setting. Although because of the lack of funding and support family members tend to burn out quickly thus sending the patients to a nursing home.
by Kathy3/17/2011 10:24:42 PM
RE Question 4: The government says it has invested "significantly" in research ($88 million since being elected in 2006). They say that research will be important in developing strategies to deal with Alzheimer's and dementia. Perhaps someone wants to weigh in on how significant or not that research investment is...
by christina.stevens via email edited by rdruzin 3/17/2011 10:25:02 PM
RE Question 5: .these meds are not disease modifying, they don't stop or reverse alzheimers but they are 'symptomativ which means they help symptoms: cognitive//stabilize function , and help with behaviour issues..this can RERALLY help people and caregivers but as i said only 25% get a trial with one of these drugs ..DOES ANYONE think that if this was a disease of middle aged people that only 25 % would get a trial with one of these drugs ..that stigma again
by wbdalziel edited by rdruzin 3/17/2011 10:26:23 PM
If anyone out there is wondering if an Alzheimer's drug is approved in Canada. You can check Health Canda's Drug Product Database at webprod.hc-sc.gc.ca
by Rebecca Lindell3/17/2011 10:26:30 PM
RE Question 6: Christina, you are right we are seeing so many more younger cases of Alzheimer's. As for information I am unsure what is out there but I do know that the Alzheimer Society are a great source of information.
by Kathy edited by rdruzin 3/17/2011 10:27:25 PM
RE Question 4: 88 million sounds a lot but how does it compare to other disease ..for example the ontario government has poured monies into diabetes [provincial strategy]....the little irony is diabetes doubles your risk of developing dementia but nowhere in the diabetes initiative is the strategy to screen folks with diabetes for dementia so it can be picked up early AND it is hard to take care of diabetes when the patient has unappreciated cognitive problems [affecting compliance with meds/education/instructions ..interesting that dementia keeps getting FORGOTTEN..dr bill
by wbdalziel edited by rdruzin 3/17/2011 10:30:16 PM
RE Question 6 ..10% of alz sufferrers are under 65..dr bill
by wbdalziel edited by rdruzin 3/17/2011 10:30:48 PM
well i am just having a nice pint of guinness..heres to the irish in all of us ..slainte ...dr bill
by wbdalziel3/17/2011 10:36:13 PM
Here's a fictional YouTube video about a teenage girl dealing with her mother's Alzheimer's. I haven't lived through this, so I can't vouch for it's reflection of reality, but it won best short film on YouTube in 2007.
by Rebecca Lindell3/17/2011 10:38:36 PM
Here's a link to some other resources to help kids and teens. www.alz.org
by Rebecca Lindell3/17/2011 10:39:03 PM
RE: Question 7: Bill, I found Rebecca's question interesting. Why, in your opinion, haven't many new drugs been approved in recent years?
by rdruzin3/17/2011 10:43:22 PM
RE: Question 7: until the last few years, research money was limited and we didn't quite know enough about the science..now monies are being spent by granting agencies and by pharmacologic companies ..there are now 20+ drugs/vaccines in the 2nd or 3rd 'stage ' of research trials on humans so things are looking up for a disease modifying drug
by wbdalziel edited by rdruzin 3/17/2011 10:47:52 PM
Question 8: Bill, a lot of people on the blog on Monday had questions about the antipsychotic drugs that were being used in their loved one's care home. How can caregivers find out which drugs their loved ones are taking and what are some of the questions to ask the doctor who prescribed them?
by Rebecca Lindell edited by rdruzin 3/17/2011 10:51:28 PM