What you need to know to be prepared for increasing expenses.
When it comes to getting the best care for a loved one experiencing cognitive decline, knowledge is power. Here are the key areas caregivers need to understand to find optimal solutions for their unique situations.
Alzheimer’s and other forms of cognitive decline are progressive, which generally means less care is needed in earlier stages and more intensive care is required as symptoms stack. You’ll likely begin to hear the technical term “activities of daily living” or ADLs. These are basic self-care requirements, like feeding yourself, getting dressed, going to the bathroom and showering or bathing. Over time, your loved one will require help with some and likely all of these activities.
When and if you choose a place for your loved one to live outside of their home or yours, you should be aware that more assistance often means added expense. Often the best-case scenario is to find a facility that’s “all-inclusive” and doesn’t have “a la carte” levels of care. Make sure to ask in-depth questions about how increasing needs are met and the associated costs. Some facilities charge extra per person based on how many staff are needed to move someone from a wheelchair to a bed, for instance, which can be $300 per person, per month1. It’s not uncommon for even a small person to require two or three people for a transfer in the advanced stages of the disease.
Coming to terms with the inevitable progression of cognitive decline will help you enjoy the time you have with your loved one at every stage. Understanding the reality as early as possible will help you choose a location that will flex with your loved one’s physical, emotional and financial realities over time.
Although many facilities are branded as “memory care,” it’s important to understand that this is really a marketing term. From an industry perspective, it is not officially defined. What really matters is knowing if your loved one needs skilled nursing and long-term care.
Skilled nursing is a medical licensing designation that means a facility provides 24/7 nursing care with licensed nurses on duty at all times and a physician overnight. They can provide therapy services, administer medication and handle medical situations like wound care2.
On the other hand, long-term care is more of an insurance term, and refers to duration rather than specific type of care3. Most patients experiencing cognitive decline don’t require intensive skilled nursing care, but rather what’s technically called “custodial care,” which is non-medical assistance with routine daily activities. Whatever you call it, you’ll most likely get that combination of medical and custodial care in “nursing homes” versus assisted living facilities.
In the early stages of cognitive decline, an assisted living arrangement will seem most appealing. It’s well-suited to those who just need a little extra help in a more controlled environment with some medical staff on hand. However, it’s essential to remember that cognitive decline will progress and your loved one will need more help and more care as time passes. Layer on top of this that moving is increasingly traumatic for those experiencing cognitive decline, and you begin to understand the advantages of choosing a place where your loved one can transfer from one room to another as opposed to moving to another facility.
Surprisingly to many, the type of care needed for cognitive decline is not covered by any insurance, with the exception of long-term care insurance. Medicare does not cover long-term care for cognitive decline. This makes most options completely self-pay. Medicaid only kicks in when all other income sources are fully depleted, and only certain facilities will accept Medicaid patients.
Long-term skilled nursing care is very expensive. Averages vary across the country, and tend to be much more costly in affluent and urban areas. It is very common for the monthly cost of caring for a person with dementia to be $8,000 up to $14,0004. This does not include paying for supplemental insurance like Medicare Parts A and B, medications and toileting items. There can also be surcharges on top of the “rent,” based on levels of care.
Home care can be even more expensive, especially when the needs of your loved one grow beyond what a single caregiver can emotionally and physically provide on their own. A home care aide without medical training can cost between $17,000 and $25,000 per month. A skilled home nurse can run upwards of $50,000 a month5. Again, these kinds of services are not covered by health insurance for patients with cognitive decline.
You may think of hospice as a place where people very close to death go to pass away as peacefully as possible. Alternatively, home hospice allows patients to stay at home until they die. But hospice also offers additional, more expansive services. States usually run hospice programs, so what’s available may vary. The best news here is that hospice is covered by Medicare, so generally there’s zero cost. It’s a Medicare Part A benefit focused on comfort, not cure, for people with a terminal illness6. Hospice care is triggered by a life expectancy of approximately six months if the disease runs its normal course, but the care can be extended and people often stay on hospice care much longer. You’ll often be assigned a care team that includes a doctor, a nurse, one or more aides, a chaplain if you like, and a social worker. Necessary items like wheelchairs, hospital beds and even toileting essentials like incontinence supplies are covered by hospice.
The key here is to not wait until your loved one is actively dying. You can get help from hospice much earlier than you might expect. Hopefully the facility where your loved one is staying will connect you with hospice services in your area. If not, ask lots of questions and search hospice care options for yourself. Knowing your loved one is getting additional care from hospice will help you feel supported and connected, and can also ease some financial burdens.
Huntington Caregiver Banking lets account owners share limited access to their accounts with people they trust, to help spot scams, manage spending, and make sure bills are paid on time. It’s an easy way to look out for a loved one while preserving their financial independence.
Almost all assisted living and long-term nursing care facilities raise their rent and other costs every single year, if not twice yearly. The rate you pay when you first find a place for your loved one will likely increase steadily and you have little control over this. However, you can and should try to negotiate every time. If possible, be transparent about your loved one’s financial situation and stay firm on what you can afford in the face of price increases. This may feel uncomfortable, but you are the advocate for your loved one’s care and finances.
Also make sure to ask about any and all options available. Some facilities have a prescribed self-pay period after which they will allow you to apply for Medicaid to cover the gap. At some facilities, this period is one month. Others require self-pay for 24 months. Most facilities will never accept Medicaid7. It’s smart to keep these financial realities in mind when choosing a place that fits your loved one now, and can flex with them as their needs change.
No one knows how long your loved one will need care. Many people can live with Alzheimer’s and other types of cognitive decline for a decade or longer. In many cases, this is an impossible calculus. Imagine that you care for your loved one in their home or yours for as long as you can. Maybe that’s one year, or five. At a certain point, you may find you have to move them into a facility to get them the round-the-clock care they need. You can’t imagine they have much longer to live, perhaps a year. But what if your estimation is wrong? Patients in cognitive decline can continue to live for years, especially if they maintain a healthy appetite. In choosing a facility, you must assume they’ll live a very long time. Understanding this reality may help you choose a location that’s financially feasible with their current income and is sustainable for the foreseeable future.
Reaching out for connection and seeking support whenever you need it is essential for caregivers. And there are more resources available than you may realize, from personal networks to government agencies. On a personal level, you can build a care team around you. This can include a spouse, siblings, extended family and friends. As you learn about what’s needed, those people will play different roles. Some can be hands-on, or possibly provide financial support, while others will offer emotional support. If you have friends or connections going through a similar situation, make sure to reach out to them. Some of the best solutions come from word-of-mouth.
Many memory care facilities offer support groups and other resources to help caregivers as they grieve the incremental loss of their loved one. If you are assigned a hospice team, you’ll have access to a social worker and even a chaplain, complementary resources who are knowledgeable about navigating government resources and tricky emotional and spiritual landscapes.
Further, each state has dedicated elder-care organizations that are free for all state residents. For example, in Ohio there’s the Ohio Department of Aging that oversees aging policies and programs, including the Ohio Aging Compass that provides a centralized portal for aging resources, including facility and service comparison tools. In Kentucky, there’s the National Family Caregiver Support program, offering counseling and education, respite care and even limited financial assistance.
From a legal perspective, you can find specialized elder lawyers who can set up trusts and power of attorney so that your loved one’s finances and personal affairs can be handled according to their wishes. You can also get support from financial advisors to help create cost projections for how to best prepare financially.
Understanding the realities of caring for someone with cognitive decline can help you create the best, most caring environment for your loved one. So, you can focus on making the most of your time together, and getting the support you need, too.
1 ElderCalc, “Nursing Home Costs: A Complete Guide to Skilled Nursing Facility Pricing”
2 Medicare.gov, Skilled nursing facility care
3 LongTermCare.gov, What is Long-Term Care?
4 American Council on Aging, 2026 Nursing Home Costs by State and Region
5 US News, “The Cost of In-Home Care”
6 Medicare.gov, Hospice care: Medicare Part A (Hospital Insurance) covers hospice care if you’re eligible
7 National Council on Aging, "Does Medicaid Cover Memory Care?"
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