Post-Diagnosis Steps

ASK YOUR DOCTOR

Good communication can enable you to get the most out of your visit to a physician or other healthcare professional. Being open and asking questions help toward understanding and proper diagnosis and treatment.

When accompanying your loved one to a doctor, bring current medications, notes on symptoms and other issues—and a list of questions.

Ask:

What is the diagnosis?
What other tests should be taken?
Should we see a neurologist, geriatrician or other specialist?
How does the disease progress (symptoms, time span)?
What are all the available treatment options?
What is the effectiveness of each medication, in terms of memory, behavior and other symptoms?
What are the side effects, dosage, possible drug interactions, and pros and cons of each treatment?
What changes in condition should we report to you?
In addition to medication, what do you recommend in terms of diet, vitamins, physical exercise and other lifestyle changes?
What mental exercises can we do to stimulate the brain?
Are there any clinical drug trials that would be appropriate to participate in? What are the risks and benefits?
What advice can you provide regarding care?
Do you have information about community resources, such as support groups, educational workshops and services for my family?
Will you be speaking with my loved one's other doctors?
How often should we make an appointment to see you?

MEDICAL TREATMENTS

Currently, there is no cure for Alzheimer's disease.
Researchers are continually testing the effectiveness of various drug therapies that will control symptoms; slow, reduce and/or reverse mental and behavioural symptoms; and prevent or halt the disease.
Health Canada has approved 3 drugs for treatment of mild to moderate Alzheimer's disease. They are Aricept (donepezil or E2020) co-developed by Eisa Co. and Pfizer Canada; Excelon (rivastigmine) manufactured by Novartis Canada; and Reminyl (galantamine hydrobromide) manufactured by Janssen-Ortho.
Exiba (memantine hydrochloride), manufactured by Lundbeck Canada has been conditionally approved by Health Canada for use in moderate to severe Alzheimer's disease.

DISCUSSING THE DIAGNOSIS

When you learn that your loved one has Alzheimer's disease or a related dementia, you might be torn between keeping it to yourself and telling others. On one hand, shouldering this responsibility alone can be overwhelming. Yet, your concerns about other people's responses may make you hesitant to reveal the diagnosis to family, friends, and, perhaps most importantly, the person with the disease. How will they react? And how will you deal with their reaction?

Following are some suggestions on how to discuss the disease with others.

Consider the person diagnosed:

In deciding whether or not to tell the person about their disease, be mindful that they may suspect something is amiss long before a doctor reaches a diagnosis. It is their right to know what is

Inform family and friends:

Be honest about your loved one's disease. You'll probably feel relieved after discussing it with family members and close friends. Be sure to explain that Alzheimer's disease is a medical condition and not a psychological or emotional disorder or contagious virus.
Use this as an opportunity to educate them about dementia. Offer information about the disease and its symptoms. Refer them to the AFCC's toll-free hotline (877-321-2594) or local agencies for more educational materials and conferences. Suggest that they attend a support group. The more family and friends learn, the more comfortable they may feel around the person and the more willing to support you as a caregiver.

PLANNING ISSUES

Early diagnosis of Alzheimer's disease or a related dementia allows individuals and their families to learn more and plan better for the future. Consider:

Discussing the disease, its symptoms, the way it progresses, and the range of treatment options with physicians or other qualified healthcare professionals.
Telling family and friends about the diagnosis, educating them about the disease and asking for family support.
Identifying and participating in community resources, such as support groups, adult day services and respite programs at local Alzheimer's organizations or other community agencies.
Seeking support services for primary caregivers and other family members, including support groups, telephone buddies and respite care.
Participating in clinical trials.
Future planning with regard to treatment choices, legal issues, financial matters, long-term care, and end-of-life wishes while the individual is still able to participate in the decision-making.
Preparing advance directives, such as a living will and power of attorney.
Reviewing insurance coverage, including health, disability, life, prescription drug, and long-term care.
Addressing issues such as safety, motor vehicle driving and living arrangements.
Checking out long-term care options, including in-home care, assisted living facilities and nursing homes.
Protecting the individual with the disease from physical, emotional or financial abuse.