The CLBDI Advocacy Letter Template
We want to make advocating easier and give everyone the tools to start the conversation about Lewy Body Dementia with your local MPs and MPPs. Our advisory board, including cognitive neurologist and LBD researcher Dr. Pasternak, worked together to create a single page letter that lays out the present and future dementia-related issues that Canadians are faced with and urges action. Many Canadians are unaware of the situation and how it is going to affect all aspects of society very soon.
You can read the plain text version of the letter below:
"I am writing to you today to bring awareness to and open a discussion about the current state of dementia and dementia care in our province. I also want to speak about the dangers of the coming tidal wave of dementia diagnoses in Canada and how it will affect patients, caregivers, and society at large. Moreover, I want to bring attention to Lewy Body Dementia, which poses unique challenges for caretakers, patients, and medical professionals. Dementia cases are on the rise and these issues will eventually affect nearly everyone in our society. We will need to comprehensively rethink resources and proactive policy-making to address the needs of everyone affected by dementia. I also hope that we can create a plan to make Lewy Body Dementia resources more readily available for patients, professionals, and caregivers at all levels.
Lewy Body Dementia is a lesser-known form of dementia that affects up to 30% of all dementia patients. Unlike other types of dementia, the progression of Lewy Body Dementia is aggressive due to the complicated mix of cognitive decline, Parkinson-like symptoms, psychiatric symptoms, and physical deterioration. It also includes widely fluctuating symptoms that can appear at random. Every Lewy Body Dementia patient is unique and has individual care needs that can change daily. This combination of symptoms is extremely challenging and traumatic for both patients and caregivers. Moreover, correct information about Lewy Body Dementia is not widely available, which further complicates an already stressful and overwhelming situation.
As of January 1, 2024, it was estimated that 733,040 people in Canada are living with dementia and by 2030, that number will reach nearly 1 million people. This could include more than 300,000 patients with Lewy Body Dementia. That is an incredible number of patients, families, and medical professionals who are already under immense stress. Caregivers of older adults with dementia provide 26 hours of care a week, on average. This doesn’t include medical professionals. Every year, family and friends provide more than 470 million hours of unpaid care to people living with dementia, which is equivalent to 235,000 full-time jobs. Currently, 45% of caregivers for seniors living with dementia show symptoms of extreme distress. We are putting ourselves and the people we love at risk financially, physically, and mentally.
We need to have a serious discussion about the current and future challenges presented by dementia and commit to helping caregivers, patients, family members, and medical professionals. The support systems available now are not enough. The stress levels and financial burden on our province's people are high and will only get worse. Caregivers require more information and support through better access to trained PSWs and social workers, home care systems, support groups, counselling, Family Doctors, Geriatricians, and Neurologists. Research funding needs to be made available. Long Term Care homes and personnel need increased funding and ongoing training. Families require stable financial, medical, and social support systems. Everyone requires access to more accurate and updated information. We need to build dementia-friendly communities and restructure policies within our province today. Instead, it seems to be a non-issue. We hope that you will help.
Thank you for giving your attention to this. I look forward to hearing from you."
Below this, you'll find download links to the PDF and Word document versions of the letter:
CLBDI Advocacy Letter (PDF) - clbdi_letter_march_2024_2.pdf
CLBDI Advocacy Letter (Word) - clbdi_letter_march_2024_2.docx
We hope you find this letter and the information found therein useful. Feel free to add your own words, ideas, and voice to the letter to make it your own.
You can read the plain text version of the letter below:
"I am writing to you today to bring awareness to and open a discussion about the current state of dementia and dementia care in our province. I also want to speak about the dangers of the coming tidal wave of dementia diagnoses in Canada and how it will affect patients, caregivers, and society at large. Moreover, I want to bring attention to Lewy Body Dementia, which poses unique challenges for caretakers, patients, and medical professionals. Dementia cases are on the rise and these issues will eventually affect nearly everyone in our society. We will need to comprehensively rethink resources and proactive policy-making to address the needs of everyone affected by dementia. I also hope that we can create a plan to make Lewy Body Dementia resources more readily available for patients, professionals, and caregivers at all levels.
Lewy Body Dementia is a lesser-known form of dementia that affects up to 30% of all dementia patients. Unlike other types of dementia, the progression of Lewy Body Dementia is aggressive due to the complicated mix of cognitive decline, Parkinson-like symptoms, psychiatric symptoms, and physical deterioration. It also includes widely fluctuating symptoms that can appear at random. Every Lewy Body Dementia patient is unique and has individual care needs that can change daily. This combination of symptoms is extremely challenging and traumatic for both patients and caregivers. Moreover, correct information about Lewy Body Dementia is not widely available, which further complicates an already stressful and overwhelming situation.
As of January 1, 2024, it was estimated that 733,040 people in Canada are living with dementia and by 2030, that number will reach nearly 1 million people. This could include more than 300,000 patients with Lewy Body Dementia. That is an incredible number of patients, families, and medical professionals who are already under immense stress. Caregivers of older adults with dementia provide 26 hours of care a week, on average. This doesn’t include medical professionals. Every year, family and friends provide more than 470 million hours of unpaid care to people living with dementia, which is equivalent to 235,000 full-time jobs. Currently, 45% of caregivers for seniors living with dementia show symptoms of extreme distress. We are putting ourselves and the people we love at risk financially, physically, and mentally.
We need to have a serious discussion about the current and future challenges presented by dementia and commit to helping caregivers, patients, family members, and medical professionals. The support systems available now are not enough. The stress levels and financial burden on our province's people are high and will only get worse. Caregivers require more information and support through better access to trained PSWs and social workers, home care systems, support groups, counselling, Family Doctors, Geriatricians, and Neurologists. Research funding needs to be made available. Long Term Care homes and personnel need increased funding and ongoing training. Families require stable financial, medical, and social support systems. Everyone requires access to more accurate and updated information. We need to build dementia-friendly communities and restructure policies within our province today. Instead, it seems to be a non-issue. We hope that you will help.
Thank you for giving your attention to this. I look forward to hearing from you."
Below this, you'll find download links to the PDF and Word document versions of the letter:
CLBDI Advocacy Letter (PDF) - clbdi_letter_march_2024_2.pdf
CLBDI Advocacy Letter (Word) - clbdi_letter_march_2024_2.docx
We hope you find this letter and the information found therein useful. Feel free to add your own words, ideas, and voice to the letter to make it your own.
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