Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part one of an eight part series.
People can live full lives, especially in the initial stages of Alzheimer’s disease and other forms of dementia.
“Living with dementia doesn’t mean every day is a misery,” says Mary Schulz, director of education for the Alzheimer Society of Canada. “There’s a lot that can be done to manage the disease, from medication to healthy lifestyle changes and being involved in clinical trials. Even if they can’t achieve a cure, they can sometimes improve day to day living.”
Sheryl Persoon’s mother Patricia was diagnosed with Alzheimer’s two years ago. But she still lives in a basement suite in Persoon’s Coquitlam, B.C., home and remains relatively independent.
She goes to a weekly program called “Minds in Motion” (to exercise her body and her brain). And she takes the Sky Train to visit another daughter in Vancouver, although someone has to meet her on arrival.
Patricia needs reminders when it’s garbage day and her pharmacist provides her pills in a blister pack so Persoon can make sure she’s taking them. But although Patricia sometimes gets up in arms about her children “taking away her independence” and threatens to “move to another country,” says Persoon, “she’s mostly fairly content.”
First Link: The ASC provides an excellent first contact for the newly diagnosed, particularly if there’s a First Link program in your area. First Link aims to help people with Alzheimer’s disease get the support, education and services they need for the duration of the disease.
Among other things, First Link counsellors can refer you to caregiver or patient support programs, offer information about drugs and other treatment regimens and sometimes provide news about clinical trials and promising research. Generally, your doctor will ask if he can pass your name on to First Link so that someone can call you, says Dr. Larry Chambers, scientific advisor for the ASC.
Keep in mind, however, that First Link is not available in all cities and regions across Canada. You’ll find more details about the program here. You can also call your provincial Alzheimer Society office to find out about local First Link programs (for a list of numbers), or Google “First Link” along with the name of your city or region.
MedicAlert Safely Home: This program ensures that if someone with Alzheimer’s Disease or dementia gets lost, they can be safely returned home. They wear an ID bracelet engraved with critical medical information and a 24-hour hotline number that can supply an address and/or connections with emergency responders. The cost is $60 per year. For more details, click here.
Your neighborhood pharmacist: Apart from watching out for possible drug interactions, your pharmacist can provide medication in dosettes or blister packs, enabling you to check easily on whether someone with AD or dementia is taking medication regularly.
Transit services: Toronto has Wheel-Trans. Vancouver has handyDART. Most larger centres have their own version of this service that will pick up and drop off people who are physically handicapped for doctor’s appointments and other engagements.
Help with dementia and Alzheimer’s management or decisions: Saint Elizabeth (a home care provider) offers AskElizabeth at 1-877-787-7432 and has a live chat.
Your Doctor’s Role
Regular monitoring by a doctor is crucial for managing dementia, says Dr. Barry Clarke, a family doctor who specializes in geriatrics in Halifax, N.S. “If I’ve prescribed drugs, I would want to see my patients in about two weeks to check on side effects or behaviour changes that result,” he says.
“Otherwise, I’d generally see a patient every three to six months to reassess their cognitive ability and how they’re functioning – earlier if another issue arises.”
Your doctor will also likely track your blood pressure, cholesterol levels and diabetes (if you have it), as these can have an impact on dementia as well, points out Dr. Clarke. And if you’re still working and you need to apply for CPP/QPP disability benefits or for the federal disability tax credit, your doctor will have to sign the forms.
Depending on your province, you may need a doctor’s letter to get help or care in the home.
The ASC suggests making doctor’s appointments for times when you’re likely to be well rested and at ease, and bringing along a family member or friend for emotional support.
For other tips on doctor’s visits, click here.
It’s also a good idea for caregivers to track their relative’s or friend’s medications so medical staff have an up-to-date list. “You may assume that medical professionals keep each other informed,” says Schulz. “That’s not always the case.”
Since caregivers may not be able to be with their parent or friend every moment of the day, it’s wise for them to fill out an emergency contact sheet with info about the person’s health conditions and medication use. They should keep several copies tacked to the fridge, or tucked into a purse or wallet in case of an emergency.
You may assume that medical professionals keep each other informed. That’s not always the case.
Act as an Advocate
When Debby Blyth’s mother, Belle, developed dementia in her 80s, Debby always accompanied her to doctor’s appointments. “The doctor would ask how she was doing and my mom would say, ‘Oh fine. I’m just fine,’” recalls Blyth, of Toronto. “I would sit behind her shaking my head and mouthing ‘no.’”
Blyth kept track of her mom’s ailments, so she wouldn’t forget to ask the appropriate questions within the time slot allowed. And she kept track of the doctor’s advice and directions for taking medication as well. If there was a nagging health problem, or she simply wanted a second opinion on some aspect of her mother’s care, she didn’t hesitate to ask for a referral to a specialist.
That kind of help can’t be underestimated, says Schulz. For more tips on how to be an effective advocate for someone with AD, check out the Alzheimer Society’s post on ‘Working with the doctor’.
At all times, whether you are the one being tested, or the caregiver who is acting as patient advocate, speak up: push for answers; push for more time. If you can’t get in to see any doctors or specialists for a while, always say: “Let me know if a cancellation comes up. I’d be happy to come in sooner.”
Watch Out For Concurrent Conditions
If you’re the care partner for someone in the early stages of dementia, keep your eyes open for other health conditions, advises Schulz. Too often symptoms of depression and other ailments get attributed to the dementia itself. “People think, ‘Well, mom seems very sad, but wouldn’t you be sad if you had dementia?’” she explains.
In fact, the most common health problems for people who’ve been newly diagnosed with AD or dementia are psychiatric conditions like depression and anxiety, says Dr. Ron Keren, a geriatric psychiatrist and assistant professor with the University of Toronto. “It may be part and parcel of the disease,” he says, “or it may be because people have insight and they react and grieve for their perceived loss of ability.”
If you’re uncertain whether your relative or friend’s symptoms are simply a result of his AD, or whether they may indicate the presence of depression as well, check out the Mayo Clinic’s post, Alzheimer’s or Depression: Could it be both?.
People with dementia are prone to other medical conditions as well. One study found an average of eight other health problems (or “co-morbid conditions” in medi-speak) – from femur fractures to cardiovascular disease and psychiatric ailments. In fact, the lower a patient’s score on the Mini-Mental State Examination (MMSE), the higher the number of co-morbidities.
To complicate matters, people with AD may have trouble tracking or remembering symptoms, or have difficulty expressing their concerns to the doctor. “Once a diagnosis [of dementia] has been made, it’s a pretty established ‘best practice’ for doctors to listen to family members,” says Schulz.
“That’s not discounting the patient’s experience, but if there’s some cognitive impairment, their insight and their problem-solving abilities are going to be most likely somewhat impaired.”
Quebec offers a 24-hour Health Hotline: 811
Almost every province has a health hotline you can call when a medical emergency arises:
Alberta: 1-866-408-5465 www.albertahealthservices.ca/services.asp?pid=service&rid=1026103
British Columbia: Click on your local Home and Community Care Office (all listed here www2.gov.bc.ca/gov/topic.page?id=25FAA716D478452886CF64E7D5FE7F08&title=How%20to%20Arrange%20for%20Care) for pertinent phone numbers.
Newfoundland and Labrador: 1-888-709-2929
Outside of Toronto http://www.ocsa.on.ca/adult-day.html;
Southwest region http://www.southwesthealthline.ca/aboutourregion.aspx;
Halton Region http://halton.ca/cms/One.aspx?portalId=8310&pageId=10649;
Haldimand-Norfolk County http://www.seniorsupport.ca/adult-day-program.html;
Peel Region http://www.peelregion.ca/ltc/programs/adult-day.htm;
Greater Toronto area http://www.centralhealthline.ca/listServices.aspx?id=10347