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Lori A. Botello Attorney & Counselor at Law

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.

How to Create a Dementia Care Plan Before a Crisis Hits

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 

 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.

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.

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 

 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.

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.

The 4 elements of a dementia care plan

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 

 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.

Lessons from Catherine’s Story:

 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.

Author Bio

Learn how to build a proactive dementia care plan before a crisis hits. Discover the 4 essential steps and watch how Catherine handled her caregiving journey.

How to Create a Dementia Care Plan Before a Crisis Hits in 2025

“Advance directive” is a term that can refer to various types of legal documents that declare an individual’s wishes for their future medical care.

These documents vary from state to state. You can obtain your state’s basic advance directive forms from many health care providers, eldercare attorneys, state health departments, your local Area Agency on Aging or download them from:

Prepare is a free service that aims to help make medical decision-making easier for people. It can be a good resource for those who need a little help walking through the process.

When creating an advance directive, it's a good idea to consult with your loved one’s doctor, geriatric care manager, or another health care provider who's very familiar with 

When your loved one creates an advance directive, be sure they:

Follow their state’s requirements so that the advance directives will be valid.

Discuss wishes with their health care provider, loved ones, and at least one person who will be able to make decisions for them should they become incapacitated (known as a health care proxy, agent, or representative).

 discussions with the doctor through their 

Some common types of advance directives are described below.

Advance Directive

Our focus here is on helping family caregivers assist a loved one to complete the advance care planning process, but really, any adult in any stage of health should go through the process of advance care planning. After all, none of us knows when an accident or unexpected event can drastically alter life as we know it!

Unfortunately, when tragedy strikes, families are all too often left struggling to figure out what to do – and often, not everyone is on the same page. Headache and heartache abound when family members disagree about how to handle tough situations.

Advance care planning lets your loved one 

make their wishes known in the event that they can no longer speak for themselves

. It makes it much more likely that they will end up receiving the kind of care that they’d like, and it can alleviate a lot of stress and strife among members of the family.

Who is Advance Care Planning Right For?

Once advance care decisions have been made, it’s vital to document them in such a way that they'll be honored by healthcare providers and financial institutions, should the need arise. The major documents you should familiarize yourself with are included here.

How to Document Advance Care Wishes

Helping your loved one with the advance care planning process entails:

Learning about which decisions may need to be made should they become incapacitated

Making decisions about possible future care scenarios

Choosing who can manage finances, if they become incapacitated

Choosing who can make medical decisions, if they become incapacitated

Discussing these decisions and wishes with key loved ones

Documenting the decisions in a legally-binding format

Storing the original documents in a safe-yet-accessible place

Providing copies of the documents to the healthcare proxy, doctor and medical providers, and other key people.

Revisiting the documents/decisions periodically (every 10 years or so, or when there are changes in health or circumstance)

What is the Advance Care Planning Process?

) document grants a person – called an agent – authority to act on your loved one’s behalf. This could allow the agent to manage bank accounts, sell property, file taxes and handle other financial matters. POAs are sometimes limited to specific matters or to a specific period of time.

A “durable” power of attorney remains in effect even if your loved one becomes mentally incapacitated.

A durable POA won’t allow the agent to make medical decisions about your loved one’s health. They’ll need a Healthcare Power of Attorney for that.

A durable power of attorney for healthcare names the person who can make medical decisions for your loved one in the event that they become unable to do so for themselves. The person they name is called their health care proxy, representative, surrogate, or agent.

Your loved one should NOT just choose whoever happens to live closest to act as their proxy. It’s important to choose the right person for the job. The person selected should:

be willing and able to advocate for them if needed.

 is a legal document that describes which types of medical treatments your loved one would – or wouldn't – want to be used to keep them alive should they become terminally ill or permanently unconscious.

Each state has its own forms and rules regarding exactly what’s covered in a living will. Generally, they address areas such as:

Cardiopulmonary resuscitation (CPR) if the heart has stopped beating

Types of Advance Directives

Explore our comprehensive guide on Advance Care Planning. Learn how to prepare, document, and communicate medical wishes for your loved ones, ensuring their care preferences are respected. Ideal for family caregivers at any health stage.

Lori A. Botello Attorney & Counselor at Law

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How to Create a Dementia Care Plan Before a Crisis Hits

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