Leroy, a 70-year-old Nova Scotian who runs a building renovation business, recently began struggling to manage his usual business expenses. Yet he and his wife, Jessie, were reluctant to seek help, fearing a life-changing diagnosis.
Eventually, the couple consulted their family doctor and, after a battery of tests, were told Leroy has dementia. But it wasn’t the diagnosis and condition itself that caused them stress. It was the way the doctor conveyed the diagnosis – curtly, quickly and with little follow-up.
Leroy and Jessie are not actual people but this communication approach is all too common, leaving patients distressed and uninformed about crucial aspects of living well with dementia and doing advance care planning. Information about treatment plans, independent living, medications, personal care, end-of-life assistance and support options is simply not provided.
But it doesn’t have to be this way.
Over the past year, a group of doctors, people living with dementia, caregivers and researchers have teamed up to create clearer tips and tools for communicating a dementia diagnosis. These user-tested guidelines and assistance are freely available to help health-care workers and patients have more effective and supportive dementia-related chats.
How it came together
To tackle these challenges, the Alzheimer Society of Canada, in partnership with the Government of Canada, the College of Family Physicians of Canada, and the Canadian Consensus Conference on the Diagnosis and Treatment of Dementia, came together to create an evidence-based National Dementia Guidelines Program. The program has a heavy focus on practical tools and resources that will facilitate the uptake of guideline recommendations into practice. The first topic of the program, the Disclosing and Communicating a Dementia Diagnosis Guidelines, outlines recommendations and cultural considerations to transform the way health-care providers communicate a diagnosis of dementia.
To support the uptake of the recommendations, a portfolio of practical tools and resources was created, including the CLEAR Communication Toolkit that provides clarity, compassion and understanding when delivering life-changing news, particularly regarding dementia diagnoses.
Health-care providers often face challenges in communicating dementia diagnoses, as it involves navigating complex emotional and practical considerations. The toolkit advocates for more humane and holistic approaches to communicating these diagnoses, challenging traditional clinical detachment. By prioritizing empathy and sensitivity, it seeks to create a more supportive and compassionate health-care environment for those affected by dementia. Choice of terminology is crucial; using “communicating a diagnosis” instead of “disclosing a diagnosis” conveys a more positive message.
A step toward addressing key problems in dementia support
In Canada in 2024, there are serious issues with how we support people living with dementia, especially when it comes to health-care providers and public health strategies. Here are some key problems and ideas for solutions outlined in the Guidelines and Toolkit.
Problem 1: Health-care providers do not feel ready to help with dementia. Only 41 per cent of them say they feel prepared.
Solution: Health-care providers should receive more in-depth training on dementia during their medical education, as well as access to support throughout their careers via formal and informal networks. The Guidelines and Toolkit are a first step in providing the knowledge and understanding needed to effectively and compassionately communicate a dementia diagnosis.
Problem 2: Health-care providers are reluctant to diagnose mild dementia symptoms early, especially in communities with limited resources, which can lead to delayed support and care for those in need.
Solution: We should engage these communities in initiatives like organizing educational events about dementia, ensuring that the information provided is accessible and easy to understand, as well as inclusive of ethnoculturally diverse populations. Collaborating with community groups to disseminate this information effectively is crucial.
Problem 3: Canada has begun to prioritize quality of life and human rights for people living with dementia and their care partners but does not have a clear plan of action for people expecting or receiving a dementia diagnosis.
Solution: A clear plan that tells health-care providers what to do is vital. The Guidelines and Toolkit provide clear, evidence-based practices for health-care providers that ensure people expecting a diagnosis are met with informed, compassionate and respectful care.
Problem 4: The adoption of new ideas in dementia care into clinical practice is notably slow, leading to a significant delay in patients benefiting from the latest research findings. This delay in incorporating evidence-based innovations into care strategies prevents people living with dementia from receiving timely and improved treatment and support options.
Solution: A concerted effort is needed to implement and disseminate information between researchers and health-care providers. This could mean creating websites, hosting workshops or organizing conferences in which health-care providers less versed in research can learn about the latest findings and how to use them in their work. The Alzheimer Society of Canada is launching the Guidelines International Network Website, working with project partners to engage dissemination strategies such as the Guidelines and Toolkit.
Problem 5: Most patients know little about dementia and risk reduction strategies, and are unfamiliar with the diagnosis disclosure process. This impedes patients’ proactive health behaviours and worsens the stress and apprehension associated with receiving a potential diagnosis.
Solution: The Guidelines and Toolkit promote a holistic approach to help mitigate anxiety and improve the overall understanding and management of dementia.
Problem 6: Existing guidelines for dementia care frequently overlook people’s culture, beliefs, understandings of dementia and/or language needs. This results in a disparity in care delivery, meaning some people do not have access to necessary and appropriate dementia care services.
Solution: Addressing this gap in dementia care necessitates training health-care providers in culturally competent practices, alongside integrating person-centered principles and community collaboration. The Guidelines and Toolkit cover cultural and language considerations to ensure care is inclusive and respects the diverse needs of all patients.
There are critical issues in the current dementia care framework that can be addressed through enhanced training for health-care providers, comprehensive public education and the integration of cultural and linguistic considerations into care practices. The Guidelines and Toolkit serve as foundational tools in this effort, aiming to improve health care providers’ readiness to communicate a dementia diagnosis with patients and care partners compassionately and effectively.
A small step forward is to provide everyone with easy access to the new Guidelines, Toolkit and online education courses for Communicating a Dementia Diagnosis. Resources and more information are available at: guidelines.alzheimer.ca.
My father received a diagnosis of PPA, which was delivered by a Geriatrician. A Resident Doctor was sent to handle the MOCA testing and review of the neurologist’s scan. During the examination, the Geriatrician sat uncomfortably close to my father and asked him questions about 9/11. She never once looked at him and spoke while staring straight ahead. During a difficult moment, we received no support or compassion, which was very unsettling. We left and never returned. As Dementia is a progressive and incurable disease that can’t be treated with medication, we are left to navigate it on our own without formal interventions from the healthcare system. Even Assisted Living facilities don’t want to deal with it, especially if the patient has difficulty communicating. This raises concerns about how non-English speakers are supposed to receive the help they need. Yes, I am learning to become a Dementia Care Specialist because I can and want to help others on this journey.