Health care - Working with health care professionals - Information

It depends on whether your family doctor has training to diagnose and manage dementia. Often he or she will refer you to a physician who has specialty training in the diagnosis and management of memory disorders. That may be a family physician, geriatrician, psychiatrist, or neurologist. If you know of a doctor you would like to see, or have heard of one through friends and family, you can ask your doctor for a referral to that specific doctor.

First Link® is a support and education program offered through most Alzheimer Society chapters in Ontario (and some other provinces in Canada). You can be referred to the program by your family physician or specialist, or you can contact your local Alzheimer Society and ask about First Link®.

As a support program, First Link coordinators will answer your questions, send you information tailored to your needs, and connect you with services that may be of help to you now and in the future. For example, the coordinator will connect you to other support services including support (connection) groups for both the person living with dementia and partner, in home services, and day programs.

As an education program, First Link® offers a progressive learning series that begins at the time of diagnosis for both the person living with dementia and partner in care and moves through the changing stages of dementia so that you receive information and support as you need it. For more information about the First Link® program, contact your local Alzheimer Society.

Source: The information above comes from the Mobile Interprofessional Coaching Team (MICT): Focus on Seniors Mental Health. (2009). Getting the information and support you need. In Living with Dementia: A Guidebook for Families. Kingston, Canada: MICT. 

Your doctor and other health care team members are not authorized to share information with anyone but you and the healthcare professionals providing care for you. However, many persons with dementia appreciate having a family member or friend with them at health care appointments to serve as a support person and help take notes so that they can recall what was said when they return home. Also, it will be important for you to designate a power of attorney for personal care and substitute decision maker and to share this information with your health care team. For more information on power of attorney, visit the Planning ahead section of this website.  

If you are not comfortable with your family doctor (or even if you are) and you wonder whether they are providing the care and services you deserve, think about whether your doctor does the following:

• Offers you good advice and support
• Listens to you and your opinions
• Explains things using words you understand
• Takes time to answer your questions
• Respects you and your family members 

If you feel that you need more time with your family physician or other member of your health care team, ask for a longer appointment when you are scheduling it. Ask your doctor directly for more time with appointments if you are feeling rushed. It is important for you to have the time you need to process information so that you can make informed decisions about your care. Here is a list of suggestions that might help you with every appointment:

• Designate a notepad or folder for medical information.
  Be prepared for every visit with a list of questions. Include scenarios, incidents or examples of symptoms since your last appointment.
• Write down incidents, symptoms or questions soon after they occur and use this information to help you prepare for your appointment.
• Bring additional paper or use your notepad to take notes so you can review after the appointment.
• Always remember to write down a date as well as which health care provider you saw.
• Bring a friend or family member to listen and take notes for you.
• Make the appointment at your best time of day. Many people prefer early morning appointments because they are refreshed first thing in the morning, while other people function best in the middle of the afternoon when they are fully awake and energized.

Although your doctor is trained in the medical field, some family doctors lack enough experience and information related to dementia while others have special training in this field. This is your chance to share openly with them about your experience and educate them on what your needs are.

Do not be shy. Ask more questions. Let the doctor know you don't understand what is being shared and ask them to explain things in a different way. Suggest ways that your doctor might be able to communicate more effectively with you.