Planning Guidelines
Planning Guidelines to Deal with the Onset of Dementia
Learn how to prepare for the onset of dementia through early legal, financial, and care planning. Discover practical tips for home care, long-term support, and compassionate decision-making
Caring for someone with dementia is a deeply personal and transformative journey. Each experience is unique, shaped by the individual’s personality, stage of disease, and family dynamics. Yet, one truth remains constant preparation makes all the difference.
The first essential step is education understanding what dementia is, how it progresses, and what kind of care may be needed. The second is planning creating a flexible care framework that evolves over time. Though emotionally difficult, early preparation brings clarity, stability, and peace of mind for everyone involved.
1. Legal and Financial Planning
Dementia is progressive and incurable. The caregiving journey can be long, emotionally and financially draining. Planning ahead while your loved one is still able to participate ensures smoother decision-making later on
When my father, Baba, was still lucid, we realized how vital it was to organize his affairs. My mother and brother meticulously handled each detail—bank accounts, insurance, and legal paperwork—so there would be no confusion later. This proactive approach proved invaluable in the years ahead.
Key Financial Areas to Evaluate
Understanding and projecting both current and future costs helps avoid crisis decisions. Consider:
- Housing & Living Arrangements: Home modifications, assisted living, or nursing care
- Medical Expenses: Tests, medications, therapies, and hospital visits
- Daily Living Needs: Food, utilities, personal care, and household supplies
- Support Services: In-home caregivers, aides, therapists, or respite providers
- Transportation: Travel for medical appointments or day programs
- Lost Income: For both the individual and family caregivers
- Legal & Tax Costs: Attorney fees, estate updates, or government filings
- Emergency & Institutional Care: Respite, hospice, or hospitalizations
- Inflation & Contingency Funds: To cover rising costs over time
Essential Financial & Legal Documents
Keep organized copies of the following:
- Bank, investment, and retirement account statements
- Property deeds, titles, and mortgage documents
- Life, health, and home insurance policies
- Power of attorney and medical directives
- Pension, Social Security, or Veterans’ benefit information
- Updated wills and trust records
Insurance Review Checklist
Assess existing coverage and explore potential gaps:
- Group or private health insurance
- Group or private health insurance
- Long-term care insurance (if obtained before diagnosis)
- Disability and life insurance policies
Community Resources
Explore local and nonprofit organizations that can provide
- Respite care to support caregivers
- Home services for daily assistance
- Meal delivery or nutrition support
- Support groups for families and individuals living with dementia
Evaluate Savings and Retirement Plans
Review available assets and funding sources :
- 401(k), IRA, pensions, and savings
- CDs, investments, and home equity
- Government benefits: SSI, SSDI, or VA programs
2. Developing a Personalized Dementia Care Plan
A well-designed care plan ensures your loved one receives consistent, compassionate, and individualized support as the disease progresses. This plan should adapt over time, balancing their independence with increasing care needs.
Establish a Familiar Daily Routine
Dementia thrives on familiarity. Structure the day around predictable activities and meal times. Consider:
- Your loved one’s preferences and strengths
- Peak alertness times for activities or therapy
- Sleep and medication schedules
- Opportunities for social connection
Create a Supportive Environment
A warm, comforting environment reduces confusion and anxiety. Surround your loved one with familiar items—music, books, or personal keepsakes—to help them feel at home.
Monitor Health and Behavior Changes
Keep a detailed log of physical, cognitive, and emotional changes. These records help healthcare providers adjust treatment plans and track progression effectively.
Support Caregivers
Educate and empower caregivers—both family and professional—through training, emotional support, and respite opportunities. Caregiver burnout is real and must be actively prevented
Prioritize Nutrition and Movement
Balanced meals and light exercise are key to maintaining overall well-being. In our case, Baba’s diet included small, nutrient-dense meals with plenty of greens, fish, and whole grains. Daily walking and breathing exercises kept him engaged and relaxed
Regular Medical Checkups
Maintain ongoing appointments with neurologists, physicians, and therapists. Adjust medications and care routines as needed.
Ensure Home Safety
Modify the home environment
- Remove tripping hazards
- Label rooms clearly
- Install grab bars and ensure proper lighting
3. Long-Term Dementia Care Planning
As dementia advances, home care often becomes more challenging. Early conversations about long-term care—whether at home or in a facility—allow families to align decisions with their loved one’s wishes.
Our Family’s Decision
For Baba, remaining at home was non-negotiable. My mother’s devotion, combined with professional caregivers and medical oversight, made home-based care possible. Support from Nilanjana Maulik and ARDSI Kolkata provided invaluable guidance and community connection throughout.
When Home Care Is Not Feasible
Choosing a care facility doesn’t mean giving up—it means prioritizing safety, comfort, and quality of life. Each family must make decisions based on emotional, financial, and logistical realities.
Types of Residential Care Facilities
- Retirement Homes: Minimal support; suitable for early stages.
- Board and Care Homes: Small, family-like environments with personal supervision.
- Assisted Living Facilities: Daily living assistance with optional memory care wings.
- Memory Care Units: Specialized environments for dementia care and safety.
- Nursing Homes: 24/7 medical supervision for complex needs.
- Charitable / Old Age Homes: Cost-effective, but research quality carefully.
- Life Plan Communities (CCRCs): Offer continuum from independent to skilled nursing care.
How to Choose the Right Facility
- Assess Needs: Level of mobility, behavioral symptoms, and medical conditions
- Tour and Observe: Staff demeanor, safety features, and resident engagement
- Ask Questions: Staff training, emergency response, medication handling
- Family Involvement: Visitation policies and caregiver communication
- Review Contracts: Fees, inclusions, and discharge policies
- Trial Stays: Short-term respite stays can help assess fit
Final Reflection
Preparing for dementia care is not only a logistical process—it’s an act of love. The more you plan today, the more peace and security your family will have tomorrow. Whether care happens at home or in a facility, the goal remains the same:
to ensure your loved one is treated with dignity, compassion, and respect at every stage of the journey.