According to the Alzheimer’s Association, roughly 6.2 million Americans age 65 and older are living with Alzheimer’s disease, the most common form of dementia. Most of these individuals are 75 or older (72 percent), and nearly two-thirds are women.
To put this in context, July 2019 U.S. Census Bureau estimates put the 65+ population at about 54.1 million — roughly 30 million women and 24.1 million men. That means about one in nine seniors in the U.S. has Alzheimer’s disease, and that figure excludes people with other forms of dementia or cognitive decline.
Projections suggest the number of Americans 65 and older with Alzheimer’s could more than double to about 12.7 million by 2050. Given the current strain on caregivers and long-term care systems, this rise points to a growing caregiving challenge. Who will provide appropriate care for so many people living with dementia?
>> Related: When Memory Issues Are Cause for Concern
Unpaid caregivers are the norm for those with dementia
Today, most senior care in the U.S. — about 83 percent — is delivered by unpaid caregivers, typically family members or close friends. Nearly half of those unpaid caregivers are caring for someone with Alzheimer’s or another form of dementia. The Alzheimer’s Association estimates more than 11 million people are providing unpaid care to someone with dementia.
Characteristics of dementia caregivers include:
- About one-third are age 65 or older.
- Around two-thirds are women.
- More than one-third are daughters of the person with dementia.
- Two-thirds live with the person they care for.
- About one-quarter are “sandwich generation” caregivers, supporting an aging parent while also raising children under 18.
…but unpaid care is not free
Though unpaid, caregiving carries significant economic value and personal cost. In 2020, dementia caregivers provided an estimated 15.3 billion hours of care, representing a market value of approximately $257 billion. Families bear about 70 percent of the total lifetime cost of caring for a person with dementia, including unpaid care and out-of-pocket expenses for health and long-term care.
Many dementia caregivers also work outside the home. A report from the National Alliance for Caregiving and AARP found that the unpredictability of dementia often forces caregivers to arrive late, leave early, or take time off work. About 10 percent of these caregivers report having to give up paid employment or retire early to meet care needs, which can adversely affect income, retirement savings, and Social Security benefits.
Beyond finances, caregiving takes a steep physical and emotional toll. Caregivers of people with dementia face higher levels of burnout, stress, and safety concerns. Compared with caregivers of people without dementia, dementia caregivers are twice as likely to report significant emotional and physical difficulties.
>> Related: The State of Unpaid Family Caregiving in the U.S.
The memory care community option
Families have several care options when a loved one receives a dementia diagnosis. Paid in-home caregivers can lighten the load, and respite care provides temporary relief for unpaid caregivers. For long-term needs, a memory care community may be a fitting solution.
Memory care communities specialize in housing and care for people with varying levels of cognitive decline, including Alzheimer’s disease. These programs may operate as standalone facilities or as specialized units within nursing homes, assisted living communities, or continuing care retirement communities (CCRCs or life plan communities).
Staff in memory care communities receive training to assist residents with self-care, communication, and behaviors affected by dementia. Facilities are designed to address common safety risks and symptoms such as wandering, confusion, and agitation.
If you are considering memory care for a loved one, the Alzheimer’s Association offers a useful list of questions to ask when evaluating care options.
>> Related: Understanding Memory Loss and Memory Care Communities
A caregiving challenge that isn’t going away
Dementia is often called “the long goodbye,” reflecting the progressive and emotionally difficult nature of the disease for both people living with it and their loved ones. Family caregivers face unique and ongoing challenges, so it’s essential they attend to their own physical and mental health while providing care.
With dementia incidence rising and the senior population growing as Baby Boomers age, the country appears to be moving toward a significant caregiving crisis. Society must develop better supports for unpaid family caregivers and expand affordable paid care options for people with memory problems.
For more information on dementia and Alzheimer’s disease, the Alzheimer’s Association website offers many useful resources.