How to Create a Dementia Care Plan Before a Crisis Hits

How to Create a Dementia Care Plan Before a Crisis Hits

50 million people worldwide are living with dementia, and this number is projected to triple by 2050. Dementia has physical, psychosocial, and economic impacts on not only those with the disease but also on their family members (i.e., family caregivers). There are 15.5 million family caregivers supporting people with dementia in the U.S., a sizable portion of the population.

One of those caregivers is Catherine who has been kind enough to share her caregiving journey with the Olera team as part of our Aging in America campaign. This campaign is our effort to recognize the struggles that family caregivers face while navigating the complex world of caregiving in America. Catherine told us a lot in her interview (watch below), and one key thing she mentioned was that, when caring for a loved one with dementia specifically, "there has to be a system before the crisis hits.” In the U.S., where the lion’s share of elder care falls to family members, her advice is important for other caregivers who often feel unprepared for a crisis like hospitalizations, rehab, or placement in assisted living, and arranging for the daily care needs a loved one requires in the home.

In her interview, Catherine explained, “Now that my husband has dementia, it never leaves. It's a subconscious stress.” She described how the daily tasks of caregiving, like bathing, cooking, driving to appointments, keeping her husband active and social, and home maintenance, can all fall entirely on one person–the primary caregiver–with little or no backup. That’s why Catherine urges others to create a system for care (like a “care plan”) to help relieve caregiver stress, especially before crises like falls, infections, or advanced cognitive decline set in.

Catherine’s story underscores the importance of having a thoughtful and intentional “dementia care plan”, so we thought we would focus our article on that. If you're currently caring for someone with dementia like Catherine is, we want to help by writing about what a dementia care plan could (and should, in our opinion) include. We thought we would break down components of a dementia care plan into four essential elements. Addressing these four elements early in the caregiving journey (or even before, as a young or middle-aged person looking ahead), familiarizing yourself with the American elder-care ecosystem, and coordinating with both family and professional support systems, can all reduce chaos during health declines, help prevent caregiver burnout, and improve the quality of life for both the person living with dementia and those caring for them.

The 4 elements of a dementia care plan

1. Understand the diagnosis of dementia

Dementia is an umbrella term that describes a decline in mental ability that interferes with daily living. This may include difficulty with tasks like paying bills, driving, or remembering appointments, and eventually impacts physical functions such as walking, bathing, or cooking.

Alzheimer’s disease is the most common form of dementia, but others include vascular dementia (often caused by multiple strokes), Lewy body dementia, Frontotemporal dementia, and Parkinson ’s-related dementia. Regardless of the type of dementia, most forms of dementia eventually lead to the need for help with activities of daily living (ADLs) like cooking, feeding, bathing, dressing, paying bills, transportation to appointments, arranging activities, and supervision. As a first step in the dementia care plan, talk to your primary care provider about the type and stage of dementia. This is important as much for understanding the condition as it is in establishing care with a primary care provider who can be there with you throughout the various stages to help coordinate and understand the medical aspects of the disease.

2. Create a Legal and Financial Plan

Dementia often affects a person’s capacity to make decisions. That’s why it’s critical to establish legal documents early, including a power of attorney (POA) for health, finances, and legal affairs. In addition, a will (details your wishes for assets and executor of estate) and a living will (details your wishes for medical treatment if incapacitated) are critical to have documented. Talking with your loved one and other family members early on, ideally before advanced cognitive decline sets in, to designate a clear decision-maker for these things and working with a lawyer to officially document these wishes is important to avoid confusion if a crisis is to occur.

As Catherine said, there needs to be “a strong leader for the team.” That leader should have legal authority to make decisions on health or financial matters to avoid confusion and delays in emergencies.

Financial planning is equally important. Senior care in the U.S. is very expensive, and health insurance is confusing in what it does and doesn’t cover. Consider who will pay for in-home assistance (for bathing, cooking, cleaning), assisted living, or skilled nursing care, if those are supports that you are considering outside of family-provided care. Understand that:

• Home care averages $30/hour (help with bathing, supervision, transport, and other ADLs)
• Assisted living can cost $3,000–$5,000/month
• Medicaid often covers skilled nursing, but only after assets are depleted and eligibility is met
• Medicare most often only covers medical expenses like hospitalizations, prescriptions, and short stays in rehabilitation centers

These are rough but realistic estimates. Long-term care insurance, private pay, and Medicaid are the primary funding sources for home care, assisted living, nursing homes, and medical care (like doctor visits, rehab, or hospitalizations), but its confusing what you need, when, and how it is going to be paid for. Medicare and Medicaid do not cover all of these costs. They typically cover medical care and nursing homes, but not professional home care aids or assisted living for ADL support. Those costs are typically private pay. Keep this in mind when planning your finances for professional support and determining what needs will be supported by the family members. There are many resources online, including our senior care website (olera.care), which can help you better understand how to pay for senior care.

3. Coordinate Medical and ADL Needs

Once legal and financial planning is thought through, determine who will be responsible for:

• Hire and coordinate in-home help or care services (to supplement family-provided care)
• Provide transportation to medical appointments
• Manage crisis response, hospitalizations, and rehabilitation center transitions

Having a “strong leader,” as Catherine mentioned, prevents delays during emergencies or transition periods as care needs increase.

4. Identify and Familiarize Yourself with Local Support Services

Before a crisis occurs, research your area's assisted living facilities, home care agencies, and skilled nursing centers. Learn:

• What services are offered in your area, and what ADL or medical support they can provide
• Their availability, cost (and modes of payment accepted; insurance or private pay), and acceptance policies
• Whether they’re highly rated (through online reviews or personal referrals)
• What are their caregiver skills and qualifications?

Transitions to higher levels of care (acute functional decline, post-hospitalization rehab, sudden need for assisted living, nursing home, or memory care) often happen suddenly like after a hospital discharge, where you have limited time to research facilities or providers, so being familiar with local facilities or agencies in your town can save time and stress if a sudden need emerges.

Lessons from Catherine’s Story:

A solid dementia care plan reduces chaos, improves patient and caregiver wellbeing, and ensures a more thoughtful response when needs escalate. As Catherine shared, “[Caregiving], is 24/7. What if I get sick? Who’s going to take care of us?”

Many caregivers share this fear but lack a dementia care plan. However, planning is so important to avoid surprises or being caught off-guard, and it isn’t pessimism to plan for the worst, but instead is compassion in action. Setting up a solid dementia care plan now is how you can help answer Catherine’s  “what-if” questions ahead of time and be more prepared for the future.

We encourage you to use this four-part framework to start creating your family’s dementia care plan. Also, you can visit aginginamerica.com to share your story and how you approach dementia care planning with other American Caregivers. Our Aging in America campaign is committed to sharing real-life caregiver stories, insights, and tools. Together, we can navigate aging in America with compassion, wisdom, and humanity.

Author Bio

Dr. Logan DuBose is a MD and co-founder of Olera.care. He writes about dementia, Alzheimer's, and other age-related conditions. He is a Texas A&M MD/MBA alum. Olera specializes in merging clinical practice with innovative solutions for the aging population.