This is a series of articles based on the wonderful report created by the Alzheimer Society of Canada, called the Many Faces of Dementia in Canada (2024). In six parts, we will do a deep dive into the latest findings about dementia, and the impact on our families and communities.
Part 3: Navigating a Diagnosis: Steps to Take After Learning About Dementia
Navigating a Diagnosis: Steps to Take After Learning About Dementia
Hearing the words “your loved one has dementia” can be overwhelming. For those supporting their aging parents, this diagnosis often triggers a wave of emotions: fear, sadness, uncertainty, and even relief in finally understanding the cause of troubling symptoms. While the path ahead may feel daunting, a proactive and informed approach can make all the difference.
This article offers a step-by-step guide to navigating a dementia diagnosis, emphasizing emotional resilience, practical steps, and leveraging available resources.
Step 1: Processing the Diagnosis
Emotional Impact
A dementia diagnosis often comes with a mix of emotions for both the individual diagnosed and their family. It’s normal to feel:
- Grief over what this diagnosis may mean for the future.
- Frustration about the lack of a cure.
- Guilt for not recognizing the signs sooner.
Actionable Tips for Coping
- Acknowledge Your Feelings: Give yourself permission to feel and process emotions. Journaling or talking to a trusted friend can help.
- Seek Support: Join a caregiver support group where you can share experiences and find solace in community.
- Focus on the Present: While it’s natural to worry about the future, try to focus on immediate steps you can take.
Step 2: Understanding the Diagnosis
Dementia Types and What They Mean
Understanding the specific type of dementia your parent has is critical for determining care strategies. For example:
- Alzheimer’s Dementia: Focuses on memory loss and cognitive decline.
- Vascular Dementia: May involve more physical symptoms like difficulty walking.
- Lewy Body Dementia: Can cause hallucinations and sleep disturbances.
Ask your healthcare provider questions like:
- What type of dementia does my parent have?
- How will the condition progress?
- What treatments or interventions are available?
Building Knowledge
- Learn About the Condition: Trusted resources, such as the Alzheimer Society of Canada, provide educational materials tailored for caregivers【8†source】.
- Identify Symptoms: Document specific behaviors or challenges to better understand your parent’s needs.
Step 3: Building a Support Network
Engaging Professionals
Navigating dementia requires a multidisciplinary approach. Key professionals to involve include:
- Primary Care Physicians: For regular monitoring and medication management.
- Neurologists: For specialized care and treatment plans.
- Social Workers: To connect you with local resources and support programs.
Reaching Out to Family and Friends
- Divide Responsibilities: Share caregiving duties to avoid burnout.
- Communicate Openly: Discuss the diagnosis and its implications with family members, setting realistic expectations about caregiving roles.
Leveraging Community Resources
The Landmark Study by the Alzheimer Society of Canada highlights the importance of culturally appropriate care, particularly for Indigenous and racialized communities【8†source】. Look for local organizations that align with your family’s cultural and linguistic needs.
Step 4: Creating a Care Plan
Immediate Needs
Begin with the basics:
- Medications: Understand prescriptions, their benefits, and potential side effects.
- Safety: Assess your parent’s living environment to reduce fall risks and confusion. Simple changes, like labeling cabinets or installing nightlights, can make a big difference.
- Daily Routines: Establish predictable routines to provide a sense of stability.
Long-Term Considerations
- Financial Planning: Work with a financial advisor to explore funding options for future care, such as government programs or insurance.
- Legal Preparations: Arrange for power of attorney and advanced healthcare directives while your parent can still participate in decisions.
Using Technology
Modern tools can simplify caregiving:
- GPS trackers to prevent wandering.
- Apps to manage medications and doctor appointments.
- Video calling for virtual check-ins when you’re unable to visit in person.
Step 5: Fostering Emotional Well-Being
For Your Loved One
- Encourage Social Engagement: Isolation can worsen symptoms. Help your parent stay connected through activities like community events or spending time with friends.
- Support Their Autonomy: Involve your parent in decisions whenever possible, whether it’s choosing meals or planning their day.
For Yourself
Caregiving is rewarding but can also lead to burnout. Prioritize self-care:
- Schedule Breaks: Use respite care services or lean on family to give yourself time to recharge.
- Pursue Your Interests: Dedicate time to hobbies or activities you enjoy.
- Seek Counseling: Professional support can help you navigate the emotional toll of caregiving.
Step 6: Staying Informed About Treatment Options
Current Treatments
While there is no cure for dementia, treatments can slow its progression and improve quality of life:
- Medications: Such as cholinesterase inhibitors, which help manage symptoms in early stages.
- Therapies: Occupational or cognitive-behavioral therapies to maintain skills and manage behavior changes.
Emerging Research
- Canada’s Landmark Study emphasizes the importance of ongoing research into dementia prevention and care. Stay updated on clinical trials or new interventions that may benefit your parent.
Step 7: Advocating for Inclusive and Compassionate Care
Addressing Barriers
Indigenous and racialized communities face unique challenges in accessing dementia care due to systemic barriers like racism or a lack of culturally safe services. Advocate for equitable care by:
- Partnering with organizations that specialize in culturally inclusive support.
- Raising awareness about the importance of addressing social determinants of health.
Community Engagement
- Connect with local Alzheimer’s societies, which often host workshops or webinars on dementia care.
- Volunteer or participate in advocacy campaigns to improve care policies.
Step 8: Embracing the Journey
While dementia is a life-changing diagnosis, it is not the end of meaningful life. Many families find moments of joy, connection, and growth along the way. By staying informed, building a strong support network, and focusing on what can be done rather than what cannot, you can navigate this journey with resilience and grace.
Remember: you are not alone. Whether through healthcare professionals, support groups, or community organizations, help is always available.
In Part 4 of this series, we will discuss living with dementia and day-to-day strategies for caregivers.
Home Instead can provide additional support to your family and provide respite for those doing the caregiving. Give us a call today at 416-972-5096 to find out more about our services and how we can help.
Source: The Alzheimer Society of Canada (2024). The Landmark Study: People. The Many Faces of Dementia in Canada. The Alzheimer Society of Canada. https://alzheimer.ca/en/the-many-faces-of-dementia-in-canada-landmark-study-volume-2
