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Health Care - Working with Health Care Professionals

  • 1) Information for working effectively with a team of health professionals
  • 2) How different health professionals can help
  • 3) Questions to and from your family physician or specialist

1) Information for working effectively with a team of health professionals

As you progress through your journey with dementia you will likely encounter many health care professionals along the way. Your best strategies in working together with them, and creating a circle of support for yourself and your partner in care, is to ensure that you express your concerns, ask as many questions as you have, and always communicate your needs and concerns to your health care team members(1).

Frequently Asked Questions

Will I only see my family doctor?
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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.

What is First Link®?
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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 chapter 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(2). For more information about the First Link® program, contact your local Alzheimer Society .

Will my doctor be sharing my medical information with my family and friends?
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Your doctor and other health care team members are not authorized to share information with anyone but you and the team of health care 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.

How do I know I have a good physician?
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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.

What do I do if I feel I do not get enough time with my family physician and health care team?
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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.

Is my family physician the expert?
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Although your doctor is trained in the medical field, some family doctors lack sufficient 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.

What can I do if I feel my doctor is not being helpful?
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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.

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Sources:

The information above comes from the following source(s):

(1) Mobile Interprofessional Coaching Team (MICT): Focus on Seniors Mental Health. (2009). You and your health care team. In Living with Dementia: A Guidebook for Families. Kingston, Canada: MICT.

(2) 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.

Helpful Links and Resources

Title of Resource What it Offers? Access to the Resource
Alzheimer Society of Ontario First Link program information http://www.alzheimer.ca/en/on/Living-with-dementia
Alzheimer Society of Ontario Finding an Alzheimer Society chapter near you. http://www.alzheimer.ca/en/on/postal-code

2) How different health professionals can help

There are many health care professionals who assist you during your journey including your family physicians, specialists, such as a geriatrician, and allied professionals such as nurses, social workers, physiotherapists, occupational therapists, and so forth. Each of them has a very special interest and can be very useful to help you live well with an illness causing dementia.

Frequently Asked Questions

Who are the key health care professionals I may want/need to work with and why?
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Depending on availability, there are many health professionals you may want to consider as part of your health care team. These include:

  1. Your family doctor. They can help link you to specialists and make referrals to other community supports. They also know your medical history and can help manage ongoing health issues.
  2. Nurse or personal support worker. They can teach you coping strategies for day-to-day activities.
  3. Pharmacist. They will be able to answer all your questions about medications, look at possible interactions between dementia medications and your other medications, as well as possible interactions between your current medications and dementia, and help find ways to simplify medication taking.
  4. Physical and occupational therapists. They can help make day-to-day activities easier by keeping you mobile, and by installing items such as grab bars and introducing new instruments you might need to make tasks easier.
  5. Social worker. This person will have all of the community links you may need in your community for learning more about dementia, finding support, and providing counseling.
  6. Alzheimer Society educators, counselors, and support staff. Staff at the Alzheimer Society can provide education about the disease, recommend community and in-home resources and services, and provide emotional support.
  7. Allied health professionals. Other professionals, such as massage therapists, can help with managing stress.

Please see the Community Supports and Services section of the website to access the services of these health professionals.

How can I find out about the health care professionals available in my community?
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Services for persons living with dementia and partners in care vary within provinces and regions. To locate services in your community, the following sources may be able to provide you with the information you need:

  • your local Alzheimer Society
  • your family doctor, health clinic or social worker
  • the public health department in your area
  • community organizations (e.g., Community Care Access Centre, home care services)
  • your friends, family, neighbours and others in the community(1)

In Ontario, you can contact the Community Care Access Centre (Community Resource section) and discuss your needs with a case manager.

Can my health care team help me plan for my future?
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Absolutely! Be honest with them. Let them know your needs and your wishes. You may want to discuss work, retirement, volunteer activities, money, legal matters, living arrangements, and personal care planning. This will allow you and your doctors to share openly about concerns and working together to come up with solutions to address those concerns.

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Source:

The information above comes from the following source(s):

(1) List reprinted with additions with permission from Alzheimer Society of Canada. (2005, October). Alzheimer care: Finding help. Retrieved from
http://www.alzheimer.ca/en/We-can-help/Support.

Helpful Links and Resources

Title of Resource What it Offers? Access to the Resource
Community Care Access Centre Information about long term care homes in your area and the application process Website: www.ccac-ont.ca/ or
Telephone: 310-2222
Alzheimer Society of Ontario Locating chapters in Ontario http://www.alzheimer.ca/en/on/postal-code

3) Questions to and from your family physician or specialist

It is normal to have many questions about your journey with dementia. Whenever you think of one, write it down and keep a running list for your next visit with a member of your health care team. Working with your health care team is a two-way street – it is just as important for you to share your health concerns and wishes as it is for your health care team to share information with you. Below are some frequently asked questions about the types of information you need to share with your health team, and questions to ask of them.

Frequently Asked Questions

What questions should I ask members of my health care team?
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After you have received a diagnosis, you may continue to have questions of your physician or specialist (downloadable PDF). Here are some questions you may like to ask:

  • Where can I go in the community to get help?
  • What kinds of activities can I do to keep active?
  • What kinds of changes should I expect over the next six months or 12 months?
  • Would any of the current treatments for dementia be suitable for me?
  • What can I do to lessen the side effects of my dementia medication?
  • Are there medications that I should avoid?
  • When should I come back for my next appointment?(1)

What should I ask my pharmacist (see Treatment and Medications section for specific information related to medications)?
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There are a lot of questions your pharmacist can answer. Never leave the hospital or pharmacy if you do not fully understand how to use your medication. Here is a list of questions you may want to ask your pharmacist (downloadable PDF):

  1. Why am I taking this medication?
  2. How will I know if this medication is working?
  3. How will I remember to take my medication?
  4. Are there any side effects? Will it make me sleepy?
  5. Will this medication interact with other medications I am taking or with my other medical conditions?
  6. Can I still take painkillers and other over the counter medications? Which over the counter medications should I avoid taking?
  7. Will it affect my herbal and vitamin supplements? Should I still take my current herbal and vitamin supplements?
  8. How and when should I take the medication?
  9. Will I need to take this medication for the rest of my life?
  10. Is "four times a day" the same as "every six hours"?
  11. Do I have to wake up during the night to take my medication?
  12. Am I supposed to take this medication with food or water?
  13. Is there anything I should or should not eat or drink while I am taking this medication?
  14. What should I do if I miss a dose? What if I take two doses too close together?
  15. I have drug allergies, is it safe for me to take this medication?
  16. Can I drink alcohol on this medication?
  17. When will I feel better?
  18. When should I see my doctor?
  19. Can I get my medication in a container that is easier to open?
  20. Where should I keep this medication?(2)
  21. Should I take my medication in the morning or evening?

See the Treatment and Medications section for a list of questions for your pharmacist.

What information does my physician or other members of my health care team need from me?
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Before meeting a member of your health care team, you should prepare yourself. Below is a checklist (downloadable PDF) to help you get ready for your next visit.

  • Did you bring all of your medication, in bottles, including over-the-counter medications like vitamins and herbal medications, or a list of medications including the strength (e.g. 5mg)?
  • Did you write down questions or concerns before the appointment? Recognize that not all issues can be dealt with at one appointment.
  • Did your trusted family members or friends write down observations regarding changes (either good or bad) that they have observed in your behaviour since your last appointment? This will help the doctor to better gauge the progression of the disease (either positive or negative), and to follow an improvement after medication.
  • Did you arrange for a trusted family member or friend to accompany you to the appointment to provide information, be a second set of ears, and take notes for you during the appointment?
  • Did you keep a list of all doctor or therapy appointments, medical tests, and hospital admissions forms to bring with you to the appointment, to help keep track of important issues?(3)

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Sources:

The information above comes from the following source(s):

(1) List reprinted with additions with permission from Alzheimer Society of Canada. (2001). Shared experiences: Suggestions for those with Alzheimer disease. [Booklet]. Toronto, Canada: Alzheimer Society of Canada.

(2) List reprinted with additions and revisions with permission from College of Pharmacists of British Columbia. (n.d.). What to ask your pharmacist. Retrieved from http://www.bcpharmacists.org/you_your_pharmacist/what_to_ask_your_pharmacist.

(3) List reprinted with additions with permission from Murray Alzheimer Research and Education Program (MAREP). (2007). Enhancing communication: an inspirational guide for people like us with early-stage memory loss. A "By Us For Us" Guide. Waterloo, Canada: MAREP.

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[This page updated on December 13, 2012]
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