According to data from the Alzheimer’s Association, there are approximately 6.2 million Americans age 65 and older who currently are living with Alzheimer’s disease, which is the most common type of dementia. A large majority of Alzheimer’s patients are 75 years old or older (72 percent), and almost two out of three Alzheimer’s patients are women.
To put these numbers in perspective, the most recent U.S. Census Bureau data says there are 54.1 million Americans who are age 65+ based on their July 2019 population estimates — 30 million women and 24.1 million men. That means that 1 out of 9 seniors in the U.S. has Alzheimer’s disease. (And this figure doesn’t even factor in those with other types of dementia or cognitive decline.)
What’s more, it is estimated that by 2050, more than twice the current number of Americans 65 and over (12.7 million) will have been diagnosed with Alzheimer’s disease. We arguably are already in the throes of a caregiving crisis in this country, so it’s tough to look at these numbers and not feel that we are headed for a serious caregiving catastrophe in the years to come. Who is going to care for all of these dementia patients?
>> Related: When Memory Issues Are Cause for Concern
Unpaid caregivers are the norm for those with dementia
Currently, the vast majority of all care for seniors in the U.S. (83 percent) is provided by unpaid caregivers — typically family members or other loved ones. Among these unpaid caregivers, nearly half are caring for someone with Alzheimer’s or another type of dementia. In fact, the Alzheimer’s Association estimates that there are currently over 11 million people providing unpaid care to someone with dementia.
Who are these unpaid caregivers for those with dementia? According to the Alzheimer’s Association:
- About one-third of these caregivers are age 65 or older.
- Around two-thirds are women.
- More than one-third of dementia caregivers are a daughter of the patient.
- Two-thirds live with the person with dementia.
- Around one-quarter are “sandwich generation” caregivers — someone who is caring for an aging parent as well as caring for their own under-age-18 child(ren).
…but unpaid care is not free
The Alzheimer’s Association also estimates that in 2020, dementia caregivers provided approximately 15.3 billion hours of care, which translates to a true market value of $257 billion. And while unpaid, that care is far from free.
Around 70 percent of the total lifetime cost of caring for a loved one with dementia is borne by their family. This is not only in the form of that $257 billion in unpaid care but also in out-of-pocket healthcare and other long-term care and living expenses.
In addition, the 3 out of 5 unpaid caregivers (61 percent) who still have a job outside of the home often pay an even bigger price, according to Caregiving in the U.S. 2020, a report by the National Alliance for Caregiving (NAC) and AARP .
The report notes that the unpredictability of dementia can cause dementia caregivers to have to go to work late, need to leave early, or have to take time off. It’s likely for this reason that 10 percent of these caregivers say they had to give up their paying job entirely or retire early in order to meet the care needs of their loved one with dementia. This can have a long-lasting impact on the caregiver’s income, retirement savings, and Social Security benefits.
And then there is the physical and mental toll. Dementia caregiving is plagued by caregiver burnout, stress, safety issues (for both the caregiver and the patient), and the ever-present realization that the care recipient’s condition will only worsen, as is the nature of this cruel degenerative disease. In fact, when compared to caregivers caring for someone without dementia, dementia caregivers are twice as likely to say they have “substantial” emotional and physical difficulties.
>> Related: The State of Unpaid Family Caregiving in the U.S.
The memory care community option
There are other care options for people who are dealing with a dementia diagnosis and their families.
Paid in-home caregivers can help alleviate some of the burden from families who are caring for a loved one with dementia. Respite care services are another option, providing temporary in-patient care that gives the unpaid caregiver a break from their duties. But for a more permanent solution for dementia caregiving, a move to a memory care community might be the right answer.
Memory care communities are specialized long-term care facilities that offer care and housing for those with varying degrees of cognitive decline or dementia, including Alzheimer’s. These facilities can be free-standing and independently operated, although most are special care units contained within a traditional nursing home, assisted living facility, or a continuing care retirement community (CCRC, also called a life plan community).
Importantly, memory care communities have specially trained caregivers who know how to help this unique population of residents with self-care and communication, which can be impacted by their condition. In addition, the physical facilities are specially equipped to manage common safety concerns and symptoms like aggression, confusion, or wandering that often accompany dementia.
If you are considering a memory care community for a loved one, here is a helpful list of question created by the Alzheimer’s Association.
>> Related: Understanding Memory Loss and Memory Care Communities
A caregiving challenge that isn’t going away
Dementia has aptly been described as “the long goodbye,” and indeed, it can be a difficult journey for both the patient and their loved ones. For those taking on the role of unpaid family caregiver to someone with dementia, this journey will likely have its own unique set of challenges. (That’s why it’s important for caregivers to remember to take care of their own physical and mental health too.)
With the incidence of dementia steadily rising, and the senior population increasing rapidly as the Baby Boomers age, we likely are on a collision course with a dementia caregiving crisis. As a society, we need to find new ways to support unpaid family caregivers, as well as identify new solutions for affordable paid care for those with memory issues.
>> For more information on dementia and Alzheimer’s disease, the Alzheimer’s Association website has many useful resources.
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