Caregiving for Dementia: 8 Key Steps for Care Planning

If you or a loved one has been diagnosed with Alzheimer’s disease or another form of dementia, thinking about the future can be daunting. However, planning for how you and your family will manage care needs can help ease stress and provide other important benefits for both patients and caregivers.

“For individuals, care planning helps ensure their preferences are respected, supports independence longer, and reduces uncertainty about future care,” says Elizabeth Edgerly, PhD, senior director of community programs and services at the Alzheimer’s Association, who is based in San Jose, California. “For caregivers, it reduces stress, improves preparedness, and provides a road map for decision-making."

Dementia care planning is a comprehensive, individualized approach that evolves over time, says Dr. Edgerly. It often includes:

• Medical care coordination: visits to dementia care specialists, medication management, monitoring symptoms
• Safety planning: home modifications, driving decisions, wandering-prevention strategies, emergency planning, fall prevention
• Daily living support: help with meals, personal care, routines
• Cognitive and social engagement: finding activities that support brain health and quality of life and bring joy
• Caregiver support planning: education, stress management

Advance care planning typically includes things like naming a healthcare decision-maker, outlining preferences for treatment, and documenting legal directives, Edgerly says.

“It differs from general care planning in that advance care planning is forward-looking, focused on future needs as the disease progresses, while care planning more broadly includes day-to-day management and support needs right now,” she says.

A care consultation is a professional, personalized session — often with a care navigator or specialist — designed to help individuals and families create or refine a care plan, says Edgerly. “The goal is to provide practical guidance tailored to each family’s situation,” she says.

If you or a loved one has been diagnosed with Alzheimer’s or any form of dementia, key topics to discuss in a care consultation include the following.

1. The Diagnosis: What It Means and Disease Progression

While Alzheimer's is the most common cause of dementia, different dementia types have varying prognoses and care needs.

“While the overall approach to care planning is similar across dementia types, the experience of living with dementia can vary significantly — and care plans should reflect that,” says Edgerly. “Understanding the unique characteristics of each type can help ensure planning is timely, relevant, and truly tailored to the individual.”

“In every situation, the most effective care plan is one built around the whole person — their symptoms, their values, their progression, and the people who support them,” says Edgerly.

2. When to Start Planning for Dementia Care

Generally speaking, care planning should begin as early as possible following a dementia diagnosis, Edgerly says.

“[For example], individuals in the early stages of Alzheimer’s can still actively participate in decisions about their care, finances, and future preferences. It also gives families more time to understand the disease, prepare for changes, and access resources before needs become urgent."

Plus, it’s important to remember that care planning is an ongoing process, not a one-time event.

“Because Alzheimer’s and other dementias are progressive, needs change over time,” Edgerly says. “Plans should be reviewed regularly — for example, after a change in symptoms, health status, or living situation — to ensure they remain appropriate.” Ideally, aim to revisit care plans and documents annually, she advises.

3. Caregiver Stress and Self-Care

“As difficult as it may be, caregivers need to make their health and well-being an equal priority,” says Edgerly. “Maintaining good habits — such as proper nutrition, exercise, and rest — is essential.”

4. How to Manage Symptoms and Behaviors

These behaviors are often a form of communication and may be triggered by basic unmet needs or discomfort, such as hunger, pain, confusion, or fear, Edgerly adds.

A care consultation can teach caregivers how to calm the situation with simple strategies like changing the environment, offering reassurance, shifting activities, or moving to a quieter space, she notes.

5. The Possibility of Long-Term Care

Retirement housing, which may be appropriate for individuals in the early stage of dementia who are still able to care for themselves independently. This type of housing generally provides limited supervision and may offer opportunities for social activities.

Assisted living, which offers more support than living independently but less than a nursing home. It usually provides a combination of housing, meals, supportive services, and health care.

Nursing homes, also called long-term care facilities, provide 24-hour care and long-term medical treatment.

Alzheimer's special care units, also called memory care units, exist in many forms, but generally are designed to meet the specific needs of individuals with Alzheimer's and other dementias.

Life plan communities provide various levels of care (independent, assisted living, and nursing home) based on individual needs.

The Alzheimer’s Association Community Resource Finder can help families find local residential care options by entering their ZIP code.

6. Legal Documents You’ll Need to Plan Appropriate Medical Care

• A living will, which lets doctors know how you feel about life-extending medical treatments in the event that you can’t make your own decisions

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• A health care power of attorney, which names a family member or friend as a proxy to make medical decisions for you in these circumstances

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7. Financial Matters: Covering the Cost of Care

Dementia-related care costs can vary widely by location, making early financial planning essential, says Edgerly. “Following a dementia diagnosis, I encourage families to discuss what future expenses may look like and seek guidance from legal and financial professionals,” she says.

8. Safety Concerns and Fire Prevention

Care counselors can also guide you on any home safety modifications that may be needed when you’re caring for someone with dementia. This can include changes designed to minimize falls (such as grab bars) as well as reducing the risk for other potential hazards inside and outside the home, says Edgerly.

Fire safety is another key concern in dementia, because memory loss and impaired judgment increase the risk of accidents, such as leaving stoves on or misusing appliances, she adds. According to Edgerly, tips for keeping a family member living with dementia safe include:

• Supervising cooking
• Using automatic shut-off devices
• Installing working smoke alarms
• Keeping exits clear
• Removing fire hazards
• Avoiding open flames by using safer alternatives like battery-operated candles.

• Care planning helps people with dementia ensure their preferences are respected, supports independence longer, and reduces uncertainty about future care. For caregivers, it reduces stress, improves preparedness, and provides a road map for decision-making.
• Advance care planning in dementia is the process of making decisions about future medical and personal care while a person can still communicate their wishes. It typically includes things like naming a healthcare decision-maker, outlining preferences for treatment, and documenting legal directives.
• A care consultation is a professional, personalized session with a dementia expert designed to help individuals and families create or refine a care plan. Key topics to discuss include disease progression, when to start planning for care, caregiver stress and self-care, how to manage symptoms and behaviors, long-term care, legal and financial documents, and safety and fire concerns.