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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

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“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

Use of tube feeding (and for how long) if unable to eat or drink

Dialysis to remove waste from the body if kidneys aren’t able to do so

Antibiotic or antiviral medication to fight infections

 (supporting comfort as the end of life nears)

 is a document intended for individuals who are seriously ill, very frail, or near the end of their life. It is an order that must be signed by a health care provider such as a doctor or nurse practitioner. The POLST instructs other health care providers – such as paramedics or hospital staff – to refrain from life-sustaining treatment, such as CPR.

The forms vary from state to state. In some 

, such as POST, MOLST, or MOST. They aren’t yet fully available in every location. You can find out more at the National 

, or talk to your loved one’s doctor about whether a POLST is available in your area, and whether it would be appropriate in your loved one’s case.

Types of Advance Directives

There are many reasons people don’t create advanced care plans – they don’t want to think about death or dying, they’re confused about the process, or they simply don’t know about it. However, there really isn’t any reason that they shouldn’t.

Like creating a will or trust, because the unforeseen can happen at any time, starting the 

 as early as possible is strongly recommended.

If your loved one hasn’t yet done this, it should rank high on the list of priorities. Fortunately, there are plenty of resources to help walk you both through the process.

Why Shouldn’t My Loved One Create an Advance Care Plan?

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.

Complete Guide to Advance Care Planning for Family Caregivers

Whether your loved one needs skilled medical care or just a little help in a home-like setting, there are several options when it comes to long-term care.

Introduction

If your loved one has complex medical conditions – or needs a lot of help with mobility – a nursing home (or skilled nursing facility) may be the only place that can meet their needs. It’s also easier for those who are 

 to arrange for Medicaid to cover nursing home costs than other long-term elderly care types.

Independent living can be a good choice for seniors who are mostly independent but would benefit from a friendly, supportive neighborhood and a little help with yard work and home maintenance.

Seniors who can manage fairly well on their own with a little help with meals, dressing, bathing, housekeeping, shopping, and companionship often do well in an assisted living apartment. A good option for senior living.

Residential care comes in a variety of sizes and setups, such as adult foster homes, group homes, and facility settings. They tend to emphasize a home-like environment and offer assistance with personal care, meals and housekeeping. Some homes are designated for special populations, like LGBTQ+, or those who share particular languages, cultures, or religions. This can make a big difference in your loved one’s sense of belonging.

Memory care services offers special programming for seniors with Alzheimer’s disease and other forms of dementia. They’re especially suited to seniors who are at risk for wandering. Some focus on helping your loved one function at their best despite their challenges.

Life care communities (also called continuing care retirement communities or CCRCs) typically offer independent living, assisted living, a nursing home, and sometimes memory care on the same campus so that as your loved one’s needs change they can remain part of the same community.


 can assist with senior living like personal care, housekeeping, laundry, shopping, transportation, pet care, meal preparation, and other tasks that can help them live independently with the proper support and supervision. A good option for a family member to stay at home for day care.

Home health services features licensed healthcare professionals, such as nurses and therapists, who can tend to wounds or perform other medical care in the home. Physical or occupational therapists can help modify the home for safety and independence, and help your loved one function at their best.


Palliative care services helps minimize suffering and symptoms for people who live with chronic diseases. They work to stabilize conditions such as pain, shortness of breath, and other issues that make living independently a challenge. They focus on quality of life, so if your loved one wants to stay at home, they can help identify resources to support that goal. Palliative care can be provided in a home or facility setting.

People who are expected to live less than six more months are generally eligible for hospice care services, which can be provided in the home or a facility. With hospice care services and assistance, it’s sometimes possible to remain in the home. There are also specialized hospice group homes in some areas. These can be perfect for those who need more help than they can get at home but want to remain in a peaceful, home-like environment.

Types of Senior Care Services

There’s been an influx in online do-it-yourself (DIY) estate planning services popping up over the last few years. Promising a quick, easy and inexpensive alternative to exorbitant attorney fees, it’s easy to understand their draw.

In some cases, DIY estate planning software can be a good option. For example, individuals with very simple estates – and very simple family dynamics – who wish to leave everything to their next of kin can often get by with an online will-maker service.

However, individuals who own real property, have complicated estates, dependents, or complex family systems should consult with an attorney.

Using a DIY Service as a Starting Place Can be a Smart Approach

If you decide to opt for a DIY approach to estate planning, it’s a good idea to run the completed documents by a local lawyer to ensure they’re compliant with state law and that they reflect your loved one’s wishes accurately.

Although DIY will makers typically claim that their forms are legally binding in all states, it’s not always the case. An overlooked change in law, a typo, or small detail can end up costing the estate thousands of dollars – much more than was ever saved in attorney fees in the first place.

Furthermore, a living lawyer knows which questions to ask and can offer customized guidance throughout the process, which can really impact the estate’s value (and minimize potential future headaches) when compared to an automated one-size-fits-all approach.

Starting the will online can be smart though – it can save you valuable time in the lawyer’s office, which will minimize any hourly fees.

) include a consultation with an attorney in your state as part of an estate-planning package. This can be a good compromise that minimizes risk while keeping costs down.

Legal insurance companies also tend to cover estate planning and include consultation with legal counsel, so signing up for a month of service (or a free trial) can be a financially savvy move.

DIY Estate Planning and Online Legal Documents

How to Find Legal Aid and Pro Bono Lawyers & Representation | Nolo

How to Find Legal Help When You Can't Afford a Lawyer | Personal Finance | US News

Lawyer Referral and Information Service Policy

Making Wills Easier and Cheaper With Do-It-Yourself Options - The New York Times

Sources

Considering senior care but not sure where to start? Uncover the various senior care types and make an informed decision for your family needs.

Types of Senior Care: Find the Best Care for Your Loved Ones

Types of Senior Care - Find the Best Care for Your Elderly Loved Ones

This article provides an overview of the various options available to pay for senior living, including insurance strategies, tapping into home equity, and taking advantage of government assistance programs.

Long-term care insurance, hybrid insurance policies, life insurance with an LTC rider, and annuities are all options to pay for senior care.

Reverse mortgages and liquidating assets are other ways to pay for senior living.

Veterans have access to a range of benefits and programs, and Medicaid covers long-term care for those with very little income and assets.

Article Summary

Aside from using personal savings, other ways to pay for 

 include various insurance strategies, tapping into home equity, or taking advantage of government assistance programs.

Life insurance, long-term care insurance, and annuities are often used to pay for senior care.

 can offset the costs of long-term care but it generally must be purchased quite a bit before it’s needed – it gets very expensive as people age or develop serious health conditions. Policies don’t always cover care in every type of senior living setting, so look closely at the terms of each specific policy.

combine life insurance and long-term care insurance so you can pass a death benefit on to a beneficiary if you don’t end up needing long-term care. Most hybrid policies are more limited than traditional LTC insurance, covering only five years of long-term care payments.

Life Insurance with an LTC Rider or Accelerated Benefits 

allows you to access life insurance benefits early if needed to cover long-term care expenses.

are special contracts with insurance companies. They provide a reliable stream of income and assistance over time in exchange for an upfront lump-sum payment. Different types of annuities exist for different circumstances, such as paying for long-term care or planning for 

Many seniors sell or rent out their homes in order to pay for senior care. In some cases, they get creative – for example, by selling to a family member who, in turn, rents it back to them.

are loans for older homeowners who owe little or nothing on their primary residence. A reverse mortgage provides a lump sum or monthly income that can be used to pay for needs like long-term care. Instead of making payments on the loan, it gets larger over time. You pay back the entire amount borrowed, plus any upfront and ongoing fees when you die, sell the home or move out.

Selling artwork, jewelry, collectibles, extra vehicles, or other assets can sometimes provide enough cash to cover long-term care needs.

have access to a range of benefits and programs. Some offset the costs of long-term care and others provide board and care in nursing homes, assisted living facilities, group homes, or other senior living settings.

covers long-term care for individuals who have very little income and very few assets – provided they haven’t compromised their eligibility by giving away assets, for example. Many seniors plan ahead for Medicaid eligibility or engage in complicated Medicaid planning strategies in order to keep their spouse out of poverty or protect certain assets to pass on to their loved ones. Can be a good route for assistance.

What Are My Options to Pay for Senior Care

The national average cost of care per month (Genworth Cost of Care Survey, 2021):

Period (hourly, daily, monthly, or annually)

A different number of weekly home care hours

How Much Does Senior Assisted Living Cost?

Depending on your situation, different professionals may be most helpful in helping you pay for senior assisted living.

A CFP will look over your entire financial picture, analyze your options and help you develop a plan to pay for senior living and meet any other financial goals. Read more about finding and selecting the right CFP here.

Look for an agent specializing in the type of insurance you’re interested in exploring – long-term assisted living or home care insurance, life insurance with an LTC rider, annuities, etc. Learn about finding and selecting the right insurance agent here.

Find a reverse mortgage counselor at the U.S. Department of Housing and Urban Development (HUD) 

. A HUD-approved counselor can help you determine whether a reverse mortgage would be a sound move in your situation and guide you to finding a reputable lender.

The veterans' benefits available to you vary based on a number of factors such as your need, service history, and location. Learn more at the 

U.S. Department of Veterans Affairs website

If you have less than $2000 in monthly income and less than $2000 in assets, you can 


If you’re interested in planning ahead for Medicaid eligibility, there are a number of different types of professionals who can assist. The 

American Council on Aging’s Medicaid Planner Finding Tool

 can help you find the best planner for your situation.

Who Can Help me Take the Next Step for Senior Care?

Annual Report on Long-Term Care Insurance: 2021

Is Hybrid Long-Term Care Insurance Right for You?

Should I Get Hybrid Long-Term Care Insurance? | Policygenius

Health Savings Account (HSA) - HealthCare.gov Glossary

HSA savings can be used for long-term care in retirement | Employee Benefit News

How HSAs (Health Savings Accounts) work with HDHPs | HealthCare.gov

Struggling with the costs of senior care? Discover comprehensive finance options and assistance programs to support caregivers and their loved ones.

Paying for Senior Care & Living: Exploring Payment Options

Paying for Senior Living: Exploring Finance Options & Assistance Programs

Paying for Senior Care - Exploring Financial & Assistance Options for Senior Living

This article provides an overview of the different types of long-term care facilities available for those who need assistance with day-to-day activities, as well as the advantages of in-home care.

Long-term care facilities provide a safe and comfortable setting with professional oversight.

In-home care is an alternative to a long-term care facility, particularly when the loved one is partially self-sufficient.

There are a variety of long-term care facilities available, depending on the needs of the loved one.

When a loved one can no longer take care of themselves and needs assistance with day-to-day activities such as eating, bathing, and using the restroom, you may face a decision to put your loved one in a long-term care facility. This decision can be heartbreaking, but it is important to remember that by doing so, you are ensuring their safety in a comfortable setting with professional oversight. Further, your health and livelihood are equally as important and must be prioritized. Remember, you are not alone - millions of family caregivers around the country make the same decision every day.

Caregiving is too demanding or conflicts with work and other obligations

Loved one wanders or demonstrates other unsafe behavior

When to consider long-term care

If you are unable to provide care to your loved one, you also may want to consider in-home care as an alternative to a long-term care facility, particularly when your loved one is partially self-sufficient.

Below are some advantages of in-home care:

Removes the burden of care from you; ability to rest

Consider in-home care

There a wide variety of long-term care facilities, depending on the needs of your loved one.

For seniors who are self-sufficient with only a minimal need for medical or personal care.

Offers the ability to socialize and participate in recreational activities with their peers

For seniors who are partially self-sufficient but need help with daily activities.

24-hr supervision is provided. These include assistance with daily activities and healthcare services

Activities include: eating, using the bathroom, bathing, medication, housekeeping, dressing

Private homes where a group of residents are cared for by live-in caregivers

Types of long-term care facilities

Explore the pros and cons of home care and senior communities, helping you make an informed choice for yourself or a loved one when it comes to care, safety, and quality of life.

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