Maintaining a good relationship with your health and social care providers is important. Here are some tips for maintaining effective communication.
Be prepared for appointments:
This might include making notes ahead of time and planning for what you would like to ask or advocate for. Include any new symptoms, how treatments or medications may be affecting you and ask questions on what to expect next.
Sharing which symptoms are the most challenging can help with your care and support plan. It can be helpful to rate the severity of symptoms on a scale of 1-10 and to track this overtime. Let the doctor know if there are identifiable triggers to symptoms (e.g., sensory stimulation such as noise or light, unfamiliar places, visual triggers or increased fatigue).
Bring a companion to the appointment:
If possible, it can be helpful to have a companion for appointments. Having a second person with you can help when it comes to asking questions, ensuring all prepared questions are answered and information for any follow-up is recorded.
Be honest:
The information shared with health and social care providers is private and confidential. Candid, honest information is an excellent way to take an active part in your care and support. Changes to appetite, weight, sleep, energy, vision, speech, thinking, visual perceptual ability and mood or emotions can all be relevant.
Take an active role in understanding the plan:
All the above actions constitute taking an active part in your care and support plan. In Canada, most people with a rare dementia will be followed by a primary health care provider such as a family physician or nurse practitioner. Because these dementias are rarer, it may be that some primary care physicians or nurses have never met someone with your type of dementia. As a result, people can sometimes receive misleading or limited information about their diagnosis. You have the right to ask for a referral to specialists and you may also advocate for referrals that you believe may be helpful for you, such as occupational therapy, speech and language therapy or physiotherapy. These types of therapies may not be an automatic referral.
If you are wondering about accessing further health or social care providers, you may contact your primary health care provider for a referral or talk to the RDS support team for suggestions on how to self-refer.
