A majority of Americans over the age of 50 want to age in place, but very few are prepared to do so according to a recent poll conducted by the University of Michigan Institute for Healthcare Policy and Innovation. The findings from this survey suggest that many older adults haven’t planned for the costs of in-home care or the home modifications necessary to continue living safely and comfortably at home.
When a senior begins exhibiting signs of dementia, their family is often left scrambling to research care options, costs, and payment methods. Understanding your loved one’s current needs and how they’ll evolve as their condition progresses will help you devise a care plan and budget for it over the long term.
Planning ahead for the costs of dementia care
Dementia is a progressive condition. Therefore, it’s important to consider that the cost of caring for a loved one with dementia at home will likely increase over time.
Planning for the future is crucial. Seniors living with dementia and their family members should work together to establish care goals (such as aging in place), research the different types of care available, and create a tentative course of action. Addressing these items early on allows those living with dementia to participate in the planning process as much as possible.
Ken Takeya understands the importance of dementia care planning all too well. For the last 18 years, he’s been caring for his wife, Charlotte, who has dementia, at their home in Kailua, Hawaii. In that time, Charlotte’s needs, care plan, and cost of care have evolved considerably. Takeya’s experiences even inspired him to create a support group that helps other family caregivers as they navigate their loved ones’ changing needs.
In-home dementia care costs
During the early stages of dementia, symptoms may be minimal, and individuals are often able to function normally. Eventually, your loved one may begin to struggle with normal activities of daily living (ADLs) such as eating, bathing, dressing, and using the bathroom.
While family caregivers can address many of these daily care needs, it often becomes increasingly time consuming and physically and emotionally demanding. In-home care provides added assistance and supervision that benefits both seniors with dementia and their primary caregivers.
Companion care
Home companion care is sometimes referred to as homemaker services or sitter services. A companion or homemaker can provide non-medical assistance such as social interaction, help with errands, light housework, and meal preparation. A few short visits each week may be helpful for a senior in the early stages of dementia who lives alone and is still relatively independent. Sitters can also support a loved one who may have the tendency to wander. While they don’t provide hands-on care, they can offer supervision and verbal reminders.
Rates vary from state to state, but the national median cost of companion care was $26 per hour in 2021 according to Genworth’s Cost of Care Survey. As an example, seven hours of companion care each week would cost around $789 per month. Companion care is paid for out of pocket.
Personal care
Caring for a loved one living with dementia at home often becomes significantly more challenging in the middle and late stages of the disease. Even with the support of family and friends, primary caregivers may still struggle to provide the supervision and hands-on care their loved ones need.
This is usually when families decide to hire a home health aide (HHA) or personal care aide. Personal care includes the companion services above as well as assistance with activities of daily living such as toileting, incontinence care, bathing, and eating.
The national median cost of personal care in 2021 was $27 per hour according to Genworth’s Cost of Care Survey. As an example, a primary caregiver who works full-time and needs to hire a home health aide for 40 hours per week could expect to pay approximately $4,680 per month. These services are often paid for privately.
Ken Takeya’s two adult sons help care for their mother, but he also relies on aides for regular assistance and respite.
“I bring a caregiver in for five hours, six days a week,” he explains. “It gives me time to do something else.”
At about $43,000 per year, in-home care is Takeya’s highest caregiving cost. But it allows him to take a much-needed break from caregiving and pursue his own interests.
Home health care
Home health care is different from companion care and personal care in that it’s medical in nature. It’s usually prescribed by a doctor for individuals who require skilled nursing care or rehabilitative therapies at home. Home health care services are provided by a medical professional such as a nurse or therapist.
Medically necessary home health care is typically covered by Medicare and Medicaid, but private health insurance coverage of these services varies.
Adult day care
Adult day care centers provide a safe, engaging, and social environment for seniors outside of their homes. Generally, they’re open eight to 10 hours each weekday, although night and weekend programs may be available in some areas. These services can complement the home-based care types above and are a great option for family caregivers who work during the day or who want regular breaks from caring for a loved one.
Some adult day programs are purely social in nature, some specialize in dementia care, and some, called adult day health care centers, provide health care services and therapies overseen by medical staff. Many offer meals and transportation services to and from the center.
Takeya’s wife attended adult day care for four years. He feels that it provided a consistent routine and a sense of meaning in her life that has contributed to her continued good health.
The national median cost of adult day services in 2021 was $78 per day according to Genworth’s Cost of Care Survey. However, some programs may offer services on a sliding scale fee structure based on a senior’s ability to pay.
Read: Adult Day Care for People With Alzheimer’s Disease or Dementia
Costs of home modifications for seniors living with dementia
Adapting your loved one’s home to meet their needs may help them live more independently and safely. These changes can also make it easier and safer for both you and professional caregivers to provide assistance. Occupational therapists and physical therapists who specialize in home safety assessments can provide personalized recommendations for products, placement, and home modifications. This service may be covered by Medicare when a doctor writes an order for home health care.
The cost of home modifications for aging in place can range from $3,000 to $15,000, depending on the project. As a senior’s cognitive and functional abilities decline, necessary modifications may become more complex and expensive. If a loved one is serious about wanting to age in place, it’s best to evaluate their home and make adaptations before they’re urgently needed. For example, installing a ramp over steps or an uneven threshold will run between $1,400 and $3,000. But it could also help prevent a potentially debilitating and costly fall.
Installing an Americans with Disabilities Act (ADA) compliant toilet ($150-$400) is a pricier bathroom modification that Takeya feels is worth the expense. He explains that ADA toilets are a few inches taller than standard models, which can make a big difference for someone like Charlotte who isn’t very stable and requires assistance with transfers.
Modifications don’t always have to be expensive or complicated, though. They can be as simple as eliminating trip hazards and arranging furniture in a way that allows your loved one to navigate around the house more easily. Depending on your comfort with common tools, minor improvements like installing grab bars in bathrooms can be inexpensive, starting at around $25. In the kitchen, stove knob locks can help prevent cooking fires for as little as $20.
If extensive remodeling projects fall outside your loved one’s budget, there are also specialized senior care products that can make their home safer and more accessible without breaking the bank. For example, Takeya purchased a sliding bath chair for around $150 instead of modifying his bathtub. Medicare may help cover durable medical equipment like this if it’s ordered by a doctor.
Wandering is another safety concern for seniors living with dementia and their family caregivers. This dangerous symptom can begin without warning, but there are solutions for closely monitoring a loved one who wanders and providing them with a secure home environment.
High-tech home security systems are one of the most expensive options. GPS-equipped wearable devices can cost between $60 and $800, but some municipalities offer low-cost or free devices through the Project Lifesaver program. Stand-alone wandering alarms ($40-$200) are another affordable alternative. They can sound an alarm in your home when a door is opened, and some can even send a notification to a caregiver’s smart phone if their loved one gets out of bed.
Read: Products and Strategies for Managing Dementia Wandering
Health care costs for dementia patients
Health care costs for a senior living with dementia will depend on their overall health status, location, and mix of health insurance coverage. According to the Alzheimer’s Association, Medicare beneficiaries with dementia paid an average of $9,844 out of pocket on health care and long-term care in 2021. Average out-of-pocket spending for beneficiaries without dementia was much lower, totaling only $2,420.
Most types of insurance, such as Medicare, Medicaid, and private insurance plans, will cover a significant portion of an eligible dementia patient’s medical expenses. This includes doctor’s appointments, prescriptions, hospital stays, home health care services, durable medical equipment, and more. Despite this financial assistance, it’s important for seniors and their families to anticipate high out-of-pocket medical expenses associated with dementia care.
That has certainly been Takeya’s experience. Charlotte no longer takes medication for dementia, but he estimates that he pays about $400 per year for her other medications. For example, she takes a maintenance dose of an antibiotic to help prevent urinary tract infections (UTIs), an anti-seizure medication, and a multi-vitamin. He also pays about $5,500 yearly for Charlotte’s Medicare premiums and doctor’s bills.
Costs of elder care products and supplies
Similar to medical costs, the supplies used to care for a loved one with dementia at home will vary.
It can be easy to overlook the costs of personal care items such as soap, shampoo, and oral hygiene products, but they can add up over time. Senior-friendly versions that make caregiving easier like no-rinse shampoos, adult-size bathing wipes, and disposable mouth swabs can be even pricier.
“We spend almost five grand a year on supplies,” Takeya says.
He recognizes that some families may be able to spend less, but there are certain products he finds helpful and is willing to splurge on. For example, because Charlotte is incontinent, she wears adult disposable briefs.
“I prefer Depend [brand], because it’s a pull-up, and it’s easier to work with,” he explains.
Although each senior with dementia has different needs that will change over time, these items are commonly used to care for a loved one at home:
- Sanitary wipes: $13/3 packages of 75
- Adult disposable briefs (Depend): $27/package of 30
- Disposable underpads to protect mattress/furniture (Chux): $22.74/package of 18
- Disposable gloves: $10/package of 100
- Food and beverage thickener for patients with dysphagia (DysphagiAide): $33.25/400-serving jar
Since incontinence is common in the middle and later stages of dementia, additional household cleaning supplies are often another cost to consider.
The financial and personal costs of being a dementia caregiver
Discussions about dementia usually focus on seniors’ symptoms and experiences, but their caregivers are often deeply affected, too. Dementia caregivers face significant financial and emotional stress.
On average, family caregivers provide 22.3 hours of care per week according to a study conducted by the National Alliance on Caregiving and AARP. This significant time commitment can have a negative impact on a caregiver’s career, income, and ability to plan for their own retirement.
While seniors with dementia may have some savings, benefits, or retirement funds to help pay for their care, their families often find it necessary to help cover costs. A 2017 study published in the Journal of the American Geriatrics Society found that families incur 70% of the care costs for their loved ones living with dementia over the course of the disease. The combined value of their informal care and out-of-pocket contributions totals approximately $225,000.
Although it’s more difficult to quantify, research has shown that dementia caregivers’ quality of life often declines over time. Most family caregivers assume this role with little hesitation, but it’s important to prioritize your own physical and mental health, too.
Takeya stays occupied with his home-built aquaponics garden. It started out as a hobby but turned into a form of self-care. He also formed a support group where he shares his experiences and the knowledge he’s gained over the years with fellow caregivers in his community.
Finding ways to take care of yourself benefits you and your loved one. The Alzheimer’s Association suggests the following tips for managing caregiver stress:
- Seeing a doctor regularly
- Exercising at least 30 minutes each day
- Eating a healthy diet
- Participating in things you enjoy outside of caregiving
Find help understanding the costs of dementia care
Understanding the cost of in-home dementia care and how to budget for it is complicated. Each senior living with dementia is unique, and their needs will evolve as their condition progresses. For more information on the costs of dementia care, consider joining the AgingCare Caregiver Forum. Here, you can connect with seasoned dementia caregivers who can answer your questions and share their personal experiences. You can also reach out to one of our Care Advisors for help finding local home care providers that fit your loved one’s needs and budget.
Reviewed by dementia care expert Adria Thompson, M.A., CCC-SLP.
Sources:
Older Adults’ Preparedness to Age in Place (https://www.healthyagingpoll.org/reports-more/report/older-adults-preparedness-age-place)
Ken Takeya (Personal interview, telephone)
Genworth Cost of Care Survey (https://www.genworth.com/aging-and-you/finances/cost-of-care.html)
How Much Does It Cost to Remodel a Home for Aging in Place? (https://www.fixr.com/costs/aging-in-place-remodeling)
Economic Burden of Alzheimer Disease and Managed Care Considerations (https://www.ajmc.com/view/economic-burden-of-alzheimer-disease-and-managed-care-considerations)
2022 Alzheimer’s Disease Facts and Figures (https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf)
Durable medical equipment (DME) coverage (https://www.medicare.gov/coverage/durable-medical-equipment-dme-coverage)
Societal and Family Lifetime Cost of Dementia: Implications for Policy (https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.15043)
Caregiving in the U.S. 2020 (https://www.caregiving.org/wp-content/uploads/2021/05/AARP1340_RR_Caregiving50Plus_508.pdf)
Be a Healthy Caregiver (https://www.alz.org/help-support/caregiving/caregiver-health/be_a_healthy_caregiver)