Planning Ahead in Dementia: What Families Should Prepare For

Dementia is a progressive illness, which means needs often change over time. Planning early can reduce crises, improve safety, reduce caregiver burnout, and help families make decisions more calmly and confidently later on. Even small steps taken now can make a major difference in quality of life for both the person living with dementia and their caregivers.

It is impossible to cover all of the possibilities of a complex disease such as dementia, so this document is meant only to be a brief summary of some of the more common issues to consider when planning for the future. It is a rough guide, and not meant to be either comprehensive, nor thorough. If you would like to learn more about any of these particular topics, please let your care navigator know for more specific resources.

Why Planning Matters

Planning ahead can help families:

• Prepare for future care needs
• Reduce caregiver stress and burnout
• Improve home and medication safety
• Avoid emergencies and rushed decisions
• Preserve dignity and quality of life
• Clarify who will make medical and financial decisions later

The earlier planning happens, the more the person living with dementia can participate in decisions about their future.

Legal and Financial Planning

Power of Attorney (POA)

Families should strongly consider completing:

• Financial Power of Attorney
• Medical/Healthcare Power of Attorney
• Advance directives or living wills

Without legal documents in place, families may face major challenges making medical or financial decisions once capacity declines.

Important items to organize:

• Insurance information
• Medication list
• Banking information
• Important contacts
• Identification documents
• Passwords/account access
• Copies of legal documents

Keep copies in a safe but accessible location.

Violence, Agitation, or Refusing Care

Behavior changes are common in dementia and are often related to fear, confusion, pain, overstimulation, or unmet needs.

Learning helpful approaches before the first signs of aggression or resistance can prepare the caregiver both mentally and emotionally for when it happens:

BANG approach for aggression in dementia:

• B — Breathe: Stay calm, slow voice/body language
• A — Assess/Agree: Look for triggers (pain, toileting, hunger, overstimulation) and validate emotions rather than correcting
• N — Never Argue: Avoid logic battles or memory testing
• G — Go With the Flow: Redirect, distract, change activity/environment

If aggression becomes dangerous, families should seek medical guidance and reassess the level of care needed.

Otherwise, note that aggression is often communication of unmet needs, fear, pain, or confusion. Once safety of all parties is assured, then possible underlying factors should be investigated.

Wandering

Wandering is common in dementia and can become dangerous quickly. People may try to “go home,” leave unexpectedly, or become lost even in familiar places.

Helpful strategies:

• Keep routines consistent
• Avoid arguing or physically restraining unless necessary for safety
• Use door alarms or locks
• Supervise high-risk individuals closely
• Alerting friends and neighbors about your loved one's condition, and to report if seen wandering
• Carry updated identification and emergency contact information
• Consider medical ID bracelets or GPS devices

Planning How Care Will Be Paid For

Dementia care can become expensive over time. Families should discuss finances early.

Possible resources may include:

• HottoCare respite benefit
• Medi-Cal/Medicaid
• Long-term care insurance
• Veterans benefits
• Employee Assistance Programs (EAP)
• Adult day programs
• Respite care programs
• State and county aging services
• Local nonprofit organizations
• Personal accounts that may be repurposed (for example, HSA accounts)

Helpful resources:

• Alzheimer’s Association
• National Institute on Aging
• Sourcewise (California Bay Area aging services)

The Alzheimer’s Association and Area Agencies on Aging can often help families locate local respite programs, support groups, transportation services, and financial assistance resources.

Preventing Caregiver Burnout

Caregiver stress is extremely common in dementia care. Burnout can affect physical health, sleep, mood, and relationships.

Warning signs may include:

• Exhaustion
• Depression or anxiety
• Irritability
• Feeling isolated
• Trouble sleeping
• Feeling overwhelmed or hopeless

Ways to reduce burnout:

• Accept help from others
• Rotate caregiving duties
• Use respite care
• Join support groups (HottoCare does offer this)
• Seek therapy or counseling
• Maintain regular medical care for the caregiver

Many caregivers report that support groups help reduce feelings of isolation and guilt.

Planning for Emergencies or Loss of a Caregiver

Families should have a backup plan in case the primary caregiver:

• Becomes ill or is hospitalized
• Needs a break
• Can no longer safely provide care
• Dies

Consider:

• Identifying backup caregivers
• Keeping emergency instructions written down
• Maintaining updated medication and contact lists
• Creating a shared family communication plan (Personal Care Agreement)

Important information should never exist only in one person’s memory.

Home Safety and Environmental Changes

As dementia progresses, safety concerns often increase. Home adjustments can help reduce falls, wandering, injuries, and confusion.

Possible safety measures:

• Remove trip hazards
• Install grab bars
• Improve lighting
• Lock up medications and firearms
• Use stove shutoff devices
• Install door alarms or monitoring systems
• Consider GPS tracking devices for wandering risk
• Simplify cluttered environments

Safety needs often change over time and should be reassessed regularly.

Assisted Living Facilities (ALF) and Memory Care

At some point, families may consider:

• In-home caregiving
• Adult day programs
• Assisted living
• Memory care
• Skilled nursing facilities

Reasons families may transition to higher levels of care include:

• Wandering
• Falls
• Aggression
• Incontinence
• Unsafe medication management
• Lack of available caregiving/caregiver burnout
• Need for 24-hour supervision

End-of-Life Care and Hospice

Advanced dementia is a terminal illness. In later stages, people may lose the ability to:

• Communicate clearly
• Walk independently
• Swallow safely
• Recognize loved ones
• Eat or drink adequately

They can become bedbound, have recurrent infections or hospitalizations, lose significant weight, and show other signs of general decline.

Families should discuss goals of care early, including:

• Hospitalization preferences
• CPR/code status
• Feeding tube decisions
• Comfort-focused care
• Hospice services

Hospice focuses on comfort, symptom management, caregiver support, and quality of life rather than curative treatment. Hospice can be provided at home, in assisted living, or in nursing facilities. Many families find hospice support extremely helpful for both symptom management and caregiver support.