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 6: Planning for the Future: Financial, Emotional, and Legal Preparedness
Planning for the Future: Financial, Emotional, and Legal Preparedness
A dementia diagnosis, whether recent or anticipated, often shifts families into a new reality. For women aged 50-70 supporting aging parents, navigating this complex journey requires more than caregiving—it demands thoughtful financial, emotional, and legal preparation to ensure the best possible quality of life for everyone involved.
This article provides a comprehensive guide to help families plan effectively, reduce stress, and create a road map for the future.
1. Financial Preparedness: Planning for the Costs of Dementia Care
Dementia care can be financially demanding, covering everything from daily living assistance to long-term care options. Early financial planning can help families manage these expenses without unnecessary hardship.
Understanding the Costs
The cost of dementia care varies depending on the stage of the condition and the services required. Key expenses include:
- Home Care Services: Personal support workers, nursing care, and meal preparation.
- Facility Care: Assisted living or nursing homes, which can range from $2,000 to $10,000 per month depending on location and level of care.
- Medications and Therapies: Costs for prescription drugs and specialized treatments.
- Transportation: Travel for medical appointments or social activities.
Funding Options
- Government Programs
- Canada’s healthcare system offers some financial support for dementia care, but coverage can vary by province.
- Programs like the Old Age Security (OAS) and Guaranteed Income Supplement (GIS) provide income assistance.
- Investigate provincial supports, such as Ontario’s Home and Community Care services.
- Insurance
- Review any long-term care or critical illness insurance policies your parent may have.
- Check coverage for home modifications, mobility aids, or other necessary equipment.
- Tax Credits
- Claim the Disability Tax Credit (DTC) and other deductions related to medical expenses.
- Community Resources
- Many non-profit organizations provide subsidized care services or equipment loans.
Budgeting for Dementia Care
- Track Current Expenses: Identify current caregiving costs and project future needs.
- Prioritize Essential Needs: Focus on services that directly impact your parent’s quality of life.
- Seek Professional Guidance: Consult a financial advisor to create a sustainable care plan.
2. Emotional Preparedness: Managing the Caregiving Journey
Caring for a parent with dementia is emotionally taxing, requiring resilience and self-awareness. Preparing emotionally can reduce burnout and help caregivers find moments of joy in the journey.
Anticipating Emotional Challenges
Common feelings include:
- Grief over the gradual loss of the person you once knew.
- Guilt for not being able to “do it all.”
- Anger or Frustration at the situation or at your parent’s behaviour.
- Isolation from friends and social networks.
Coping Strategies
- Accept the Reality
- Recognize that dementia is a progressive condition with no cure. Focus on making the present as comfortable and meaningful as possible.
- Build a Support System
- Lean on family, friends, and support groups to share the emotional load.
- Consider joining a dementia-specific support group to connect with others facing similar challenges.
- Practice Self-Care
- Dedicate time to activities that replenish your energy, such as exercise, hobbies, or mindfulness practices.
- Don’t hesitate to take breaks—respite care can provide much-needed relief.
- Seek Professional Help
- Counselling or therapy can provide tools to process emotions and navigate complex family dynamics.
3. Legal Preparedness: Protecting Rights and Autonomy
Legal planning is essential for ensuring that your parent’s wishes are honoured as their condition progresses. Early action helps avoid confusion and conflict later.
Key Legal Documents
- Power of Attorney (POA)
- Designate someone to make financial and property decisions on behalf of your parent.
- Ensure a separate POA for Personal Care to manage healthcare decisions.
- Advanced Healthcare Directives
- Outline your parent’s preferences for medical treatments, end-of-life care, and living arrangements.
- Will
- Confirm that your parent’s will is up to date and reflects their current wishes.
- Guardianship Orders
- If your parent cannot legally make decisions and has no POA, you may need to seek guardianship through the court.
Navigating the Legal Process
- Work with an elder law attorney to draft or update legal documents.
- Have clear, compassionate conversations with your parent about their wishes, ensuring they feel heard and respected.
- Store all legal documents in a secure but accessible location, sharing copies with key family members or legal representatives.
4. Planning for Long-Term Care
Evaluating Care Options
The right care environment depends on your parent’s needs and preferences:
- In-Home Care
- Allows your parent to remain in familiar surroundings.
- Best suited for early to mid-stage dementia with part-time caregiving support.
- Assisted Living
- Provides a balance of independence and support, with staff available to assist with daily tasks.
- May include memory care units designed for dementia patients.
- Nursing Homes
- Appropriate for advanced stages of dementia requiring 24/7 care.
- Look for facilities with specialized dementia programs and trained staff.
Choosing the Right Facility
- Research and Visit: Tour multiple facilities to assess cleanliness, staff interactions, and activities.
- Ask Questions: Inquire about staff training, safety protocols, and resident-to-staff ratios.
- Involve Your Parent: Include them in the decision-making process whenever possible.
5. Building a Family Care Plan
Family dynamics often shift during caregiving, and planning helps reduce misunderstandings and resentment.
Define Roles
- Assign responsibilities based on individual strengths. For example, one sibling may manage finances while another provides hands-on care.
Set Expectations
- Discuss boundaries and limitations upfront to avoid overburdening any one family member.
Hold Regular Check-Ins
- Schedule family meetings to review care plans, share updates, and address concerns.
Resolve Conflicts
- Use a neutral mediator if tensions arise, especially when making significant decisions like transitioning to facility care.
6. Advocating for Better Dementia Care
Caregiving families play a vital role in shaping the future of dementia care. By advocating for systemic change, you can contribute to a more equitable and supportive environment.
Support Research
- Donate to or participate in studies that advance dementia prevention and treatment.
Raise Awareness
- Share your experiences to reduce stigma and inspire other caregivers.
Push for Policy Changes
- Advocate for increased funding for long-term care and home care services.
- Call for culturally inclusive dementia care policies that address inequities.
Conclusion
Planning for the financial, emotional, and legal aspects of dementia care ensures your parent’s needs are met while protecting your own well-being. Though the journey may feel overwhelming, preparation provides clarity and peace of mind, allowing you to focus on creating meaningful moments with your loved one.
Remember, you don’t have to navigate this alone. Lean on community resources, professional support, and the strength of your family network. By planning ahead, you can approach the future with confidence and compassion.
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
