Advice for the Newly Diagnosed

April 2013

Early Onset Alzheimer’s Disease and other Dementia’s

Newly diagnosed?  Here is advice from those in the Southwood Group. Even if you don't have an official diagnosis, but you know something is wrong, start looking after the items listed below. Diagnosis of dementia/Alzheimers is devastating. But if you can start taking care of "business" it does actually help.

1.      Start a file folder.Keep notes

a)      Every doctor’s visit. Who did you see, when, what tests, what drugs?

b)      Every visit with any other health professional.Things change and when you call them in a year you will want to know what was said last time. Note what was said and by whom.

c)      Start keeping a list of all drugs/vitamins, food supplements.Keep the list handy so you will have it whenever you need it.

d)      Create a separate file for home care.

2.      Leave no stone unturned.You want to ensure you have seen the right specialists. Ask your GP to refer you to one of the Cognitive Clinics (in Calgary:  South Calgary Hospital Cognitive Clinic, or Foothills Hospital Cognitive Clinic). You want nothing less than an MRI and/or CT scan and/or a PET scan with a full round of cognitive tests plus all the blood work, etc.The MME Mini mental exam is not sufficient 

MRI

http://alzheimers.about.com/od/glossary/g/mri.htm

PET scan

http://alzheimers.about.com/od/glossary/g/petscan.htm

CT scan

http://alzheimers.about.com/od/glossary/g/ctscan.htm

All of these tests are done to rule out other medical conditions that may cause symptoms similar to Alzheimers.These tests are done to look for tumors, strokes, damage from head injuries, or a buildup of fluid in the brain.

3.    Wills, power of Attorney, Personal directive

It’s much easier to have these completed with the help of a lawyer while the person with Alzheimer’s can still understand and knowingly agree to these provisions. Get it done NOW, don’t wait.

http://justice.alberta.ca/PROGRAMS_SERVICES/WILLS/Pages/PlanningAheadWill.aspx

4.      Get the money in order.Know what kind of insurance coverage you have for your family/spouse.

Sick leave – short term disability through your employers benefit plan.

Short term disability – long term disability  this can be through a health benefit provided by your employer and/or through Employment Insurance through the federal government, you need to apply within 4 weeks of stopping work or you might lose benefits.

http://www.servicecanada.gc.ca/eng/ei/types/sickness.shtml#eligible

Long term disability – CPP disability.  CPP is not only for those who are 65+.CPP Disability is for people diagnosed with a long term disability that will not be able to work anymore.Get these forms ASAP and start working on them.  They take quite a bit of work and some time to process.

http://www.servicecanada.gc.ca/eng/services/pensions/cpp/disability/benefit/

AISH - Check if your spouse is eligible.If you think “maybe” then apply.Government will never hesitate to not give you money, but maybe your partner is eligible. 

http://humanservices.alberta.ca/disability-services/aish.html

See a financial advisor.You need to determine your financial position given your new circumstances.

http://www.fcac-acfc.gc.ca/eng/consumers/typesinvest/advisor/index-eng.asp

Life Insurance – you may have a disability waiver for premiums, contact the insurance company.

5.      Homecare. Even if you think you do not need homecare you need to register with them to assist with accessing homecare in the future. Adult day programs are accessed through homecare as well as respite care.

6.      Start setting up the connections and opportunities your partner will need in order to have a fulfilling day years from now. Example – volunteer work.The agencies/organizations that seek volunteers turn out to be amazingly supportive in the long term.They will provide support for your spouse to continue long after they could no longer do these things on their own. They provide community, companionship and a sense of well-being.Also, recreational activities that are group based. 

7.      Upgrade technology that you and your spouse depend on early so they can learn them.If you are thinking of new cell phones – get them now.  Consider ones with GPS capability. 

http://www.alzheimer.ca/en/Living-with-dementia/Day-to-day-living/Safety/Locating-devices

8.      Join a support Group

Invaluable for support, information, and understanding that you are not alone.

Notice: This is intended as a guide only and not intended to replace advice from qualified professionals or government departments. Please speak to your doctor for qualified medical advice and contact the organizations indicated above directly for information.

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