While dementia symptoms may start out mild, most people with dementia will eventually need 24-hour care. Those days may seem far away if you or a loved one has only recently received a dementia diagnosis, but knowing what you’re up against is the best way to reduce stress and ensure smooth medical, financial, and legal transitions in the future.
In this article, Ability Central shares the most important things to focus on when considering long-term planning for dementia. We answer critical questions like:
What is the average cost of long-term dementia care?
Does the Americans with Disabilities Act (ADA) cover dementia?
What financial assistance programs are available for people with dementia in the United States?
How can someone with dementia support their mental health?
How can dementia caregivers support their mental health?
What are the benefits of a dementia support group?
How does dementia care change over time?
When should I consider a care home for dementia?
Where can I get more information about dementia?
What is the average cost of long-term dementia care?
According to the Alzheimer’s Association’s annual report, the annual cost of dementia care in the United States reached $360 billion. This averages out to care costs of about $43,644 per person per year.
Medicare and Medicaid cover about 64% of these costs, and private insurance may cover some of the remainder. On average, however, people with dementia and their families pay about 25% of medical expenses out of pocket.
As of August 2024, the average costs of dementia care included:
$9,500 for home safety modifications
$5,350 per month for senior living or assisted living facilities
$6,200 per month for memory care facilities (or about 20-30% additional payment on top of a regular living facility fee)
$9,733 per month for a shared room in a skilled nursing facility
$95 per day for adult day care (or approximately $2,090 per month)
$30 per hour for an in-home healthcare aide (averaging about $5,720 per month for full-time care)
Does the Americans with Disabilities Act (ADA) cover dementia?
The Americans with Disabilities Act (ADA) protects people who choose to work with disabilities that interfere with daily life. Under the ADA, people with qualifying disabilities have the right to access:
Employment
Public services
Transportation
Communication systems
Anti-retaliation practices
Rather than covering a specific list of disabilities, the ADA protects people who have a recorded disability that “substantially limits one or more major life activities.”
Every case is different, but according to the Dementia Action Alliance (DAA), most people with dementia meet the criteria for coverage under the Americans with Disabilities Act. This means that if someone diagnosed with dementia chooses to continue to work, they can receive accommodations to make their job manageable.
While maintaining a job can assist with overall dementia costs, there are pros and cons to consider. See the DAA website for more information. for more information.
What financial assistance programs are available for people with dementia in the United States?
The US government has multiple insurance and financial assistance options for qualified people. These include:
Medicaid pays for medical care for people with very low incomes. pays for medical care for people with very low incomes.
Medicare is a federal health insurance program for people 65 or older who receive Social Security retirement benefits or are younger than 65 and have received Social Security disability benefits for at least 24 months. is a federal health insurance program for people 65 or older who receive Social Security retirement benefits or are younger than 65 and have received Social Security disability benefits for at least 24 months.
Medigap insurance supplements the person's Medicare coverage.
Social Security Disability Insurance (SSDI) provides people younger than 65 with Social Security disability payments if they cannot work.
Supplemental Security Income (SSI) guarantees a minimum monthly income for people aged 65 or older who are disabled and have minimal financial means.
Veteran’s Affairs (VA) provides health care benefits for veterans who have actively served in the military.
How can people with dementia support their mental health?
As we mentioned in The 9 First Steps to Take After a Dementia Diagnosis, mental health is a major concern for people with dementia, especially in the first few weeks after a diagnosis.
Someone recently diagnosed with dementia might experience waves of emotions like fear, sadness, uncertainty, and anxiety. They may be worried about the future, or that their loved ones, colleagues, and doctors will treat them differently. And as dementia-related diseases progress, the risk of severe depression, anxiety, and mood swings grows.
One of the best things you can do for your mental health is to learn how to cope with a new diagnosis. HelpGuide Alzheimer’s and dementia resources recommend these tips:
Be kind to yourself. Understand that dementia is not your fault and that no one is to blame.
Reaffirm your identity. Dementia doesn’t have to define who you are; invest time in things that boost your sense of self, like spending time with family, pursuing favorite hobbies, or connecting with your community.
Allow yourself to feel complex emotions.
Learn everything you can about your diagnosis.
Seek treatment as soon as possible. Early intervention is key to maximizing quality of life with dementia.
Adapt your environment, removing clutter or hazards to keep you safe, and bringing out comforting and familiar things like family photos, tactile objects, or favorite movies.
How can dementia caregivers support their mental health?
Dementia doesn’t just affect the person with symptoms. Family members, friends, and especially caregivers may carry immense physical and emotional weights as they try to support someone with dementia.
Caregivers face many mental health concerns, but the 9 most common are:
Anxiety
Anger, irritability, or denial
Depression
Difficulty sleeping
Exhaustion
Medical issues like headaches, vision problems, or high blood pressure
Poor concentration
Social isolation or withdrawal
Burnout
The number one mental health concern for caregivers is burnout, a state of exhaustion and overwhelm that can lead to physical, emotional, and mental health problems.
To avoid burnout and other negative impacts of caregiving, the Alzheimer’s Association recommends:
Seeking out community resources
Joining a support group for dementia caregivers
Relaxation techniques like meditation, breathing exercises, or muscle relaxation
Regular exercise
Time to yourself away from the responsibilities of caregiving
Learning new caregiving skills to increase your self-confidence
Maintaining a sense of humor
Clear legal and financial plans for the person under your care
What are the benefits of a dementia support group?
Support groups help people with dementia and their caregivers face new problems together. Being in community with people facing similar experiences can help you find friends, discover creative solutions to problems, and connect with helpful services.
Dementia support groups offer people with dementia and their caregivers:
Emotional support
Education and information
Practical advice
Coping strategies
A sense of community
Empowerment and empathy
Opportunities to socialize with people who “get it”
To find a support group near you, check out these resources:
Alz.org provides message boards and virtual support groups.
The Lewy Body Dementia Association (LBDA) offers support groups for this specific diagnosis.
The Family Caregiver Alliance offers an email-based support group.
Dementia Mentors is an online support resource offering private, one-on-one mentorship and video chats.
Memory People is a Facebook group for people living with dementia, their caregivers, family members, and other loved ones.
The Alzheimer’s Foundation of America (AFA) offers free support groups that are facilitated by licensed social workers.
Hope Health specializes in support groups specifically for caregivers.
Caregiver Nation is a Facebook group where caregivers share information, understanding, empathy, and resources.
How does dementia care change over time?
Dementia is a complex and ever-changing situation. Someone’s care needs may start out with simple reminders to eat breakfast or take medicine, but eventually, most people with dementia will need help with even the smallest tasks, from dressing themselves to using the toilet.
With the right support systems in place, someone with dementia can live at home for the full course of their illness. Depending on your family’s situation, home care may be a less costly and more effective alternative to care homes or professional help.
It’s important that caregivers understand what they’re getting into. No matter how mild someone’s dementia seems at first, the truth is that neurodegenerative and progressive diseases get worse over time. That means your loved one’s care needs today may not match their care needs tomorrow, and they may need an entirely new system a year from now. To learn more about the stages of dementia, see What Does Dementia Look Like in Adults? Dementia Symptoms and Warning Signs.
Sometimes, a person’s needs outpace what their caregivers can provide. If dementia symptoms are so severe that they start impacting caregivers’ lives too, it might be time to consider more advanced help.
When should I consider a care home for dementia?
According to A Place for Mom, an online resource center for families of people with dementia, it may be time to consider memory care if your loved one:
Struggles with daily living tasks like remembering to eat or drink, dressing appropriately, bathing, or using the bathroom.
Shows clear or concerning behavioral changes, like verbal or physical aggression, wandering off, or behaviors that are offensive or inappropriate.
Experiences mood swings. Often, these are set off by feelings of fear or frustration after struggling to make themselves understood or not recognizing their surroundings.
Shows significant personality or routine changes, like self-isolation, poor sleep, lack of self-confidence, irritability, or anxiety.
Is a danger to themselves or others, like someone who still tries to drive a car or use power tools despite severe dementia symptoms.
If this sounds familiar, it might be time to look into professional care.
Dementia care facilities range from simple assisted living to in-depth memory care. Your options might include:
Retirement housing, where people with early-stage dementia can live with limited support and supervision from onsite staff.
Assisted living, which combines aspects of living independently and living in a care facility. Many assisted living communities offer things like meals, support services, health care, and local transportation to their residents.
Nursing homes, also called skilled nursing facilities or long-term care facilities. These communities provide around-the-clock care for their residents, as well as long-term medical treatment, nutrition, social opportunities, and care planning.
Memory care units, also called special care units (SCUs). These facilities, often part of a larger retirement or assisted living facility, are specifically designed for people with dementia. Staff are trained in dementia care, specialized activities, and communicating with their residents’ family members.
Dementia villages, a form of memory care unit that meets people with dementia where they are, making it easier to adjust to time shifting or hallucinations. These may be secure indoor centers with staff-run banks, movie theaters, and shopping centers, or they may be integrated directly with the local community.
Life plan communities, which combine many types of assisted living. Someone living in this facility may move in and out of different “levels” of care over time.
Where can I get more information about dementia?
To connect with doctors, nonprofits, and research organizations, use the Ability Central Service Locator tool. This nationwide database provides contact information for organizations who serve people with disabilities like dementia.
In addition, these organizations and nonprofits offer support and resources for people with dementia, their loved ones, and their caregivers:
Before you go, check out Ability Central’s other resources about dementia and dementia care, including:
Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
