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Health and Social Care Providers

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Maintaining a healthy relationship with your health and social care providers is important. Here are some tips for maintaining effective communication.

Be prepared for medical 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 mediations may be affecting you or your family member day to day and ask questions on what to expect next.

Sharing which symptoms are the most challenging can help with the care 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 (i.e., 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 with the care provider:

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. 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 care plan:

All the above actions constitute taking an active part in your care plan. In Canada, most people with a rare or young onset dementia will be followed by a family physician. Because these dementias are rarer, it may be that some primary care physicians have never met someone with your type of dementia.  As a result, people can sometimes receive misleading or limited information about their diagnosis. It is important to remember that 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 think they may be of help, it is your right to self-advocate. For more information on types of specialists support please see the FAQ below.

FAQ

There are many different types of health and social care supports that are effective for people living with rare or young onset dementia. Here are a few sources of support that people have found helpful:

Occupational Therapy

Occupational therapists can help with everyday tasks and are a helpful resource in determining where help may be needed. For example, when the challenges of rare or young onset dementia include challenges with dressing, navigating a home or executive function, an occupational therapist can help to set up systems and strategies to mitigate such challenges. Occupational Therapy may be available in your community via private practitioners and/or through your provincial health system. We recommend talking with your primary care provider for a referral, if you are covered by any form of health benefits you may have coverage for occupational therapy.

Physiotherapy

Physiotherapists can aid with movement. This can help to reduce the risk of injury from falls and other occurrences. Physiotherapists can also provide education and tailor exercises to help maintain strength. Physiotherapy may be available in your community via private practitioners and/or through your provincial health system. We recommend talking with your primary care provider for a referral, if you are covered by any form of health benefits you may have coverage for physiotherapy.

Speech and Language Therapy with a Speech and Language Pathologist

Speech and Language Pathologists are health professionals who identify, diagnose and treat communication and swallowing challenges across the lifespan. This can include articulation, phonology and motor speech challenges. Speech and Language Pathologists may be of assistance with communication overall and when language is impacted by a rare or young onset diagnosis, such as with primary progressive aphasia. Speech and Language therapy may be available in your community via private practitioners, through a community aphasia service and/or through your provincial health system. We recommend talking with your primary care provider for a referral, if you are covered by any form of health benefits you may have coverage for speech and language.

Home and Community Care for home care and respite

Home and community care services help people to receive care at home. Designed to keep people living at home longer, rather than in hospital or long-term care, home and community care services assist with activities of daily living and respite for caregivers. The services are delivered by a team that is comprised of regulated health care professionals (nurses), non-regulated workers (such as PSW’s), volunteers, friends and caregivers. In Canada most home and community care services are delivered through the provincial, territorial and sometimes municipal governments. The federal government administers home care services to First Nations on reserve, Inuit Peoples in designated communities, as well as armed forces, RCMP, and eligible veterans. Home and community care services may include nursing, personal care, physiotherapy, occupational therapy, speech therapy, social work, social work, dietitian services and respite care.

Most provincial home and community care services will take self-referrals for service. Referrals may also be made through your primary care provider.