Caregiver Burden for Those Supporting Loved Ones With Dementia


Do you know anyone with dementia? With over 7 million adults aged 65 and older in the United States living with dementia, you likely do. Dementia refers to a group of diseases that impact a person’s cognition. Living with dementia affects more than just the patients. It impacts those who love and care for them, too. 

What separates dementia from normal changes in aging is the level of independence with which a person tackles their everyday life. When a person needs assistance with their activities of daily living, such as cooking, dressing, shopping, managing finances, and tracking appointments, there could be cause for concern that a person may have progressed past normal aging. People with dementia have trouble remembering, thinking, speaking, and exhibit personality and behavior changes. Following a dementia diagnosis, patients and families must find ways to provide ongoing care as symptoms progress and worsen over time. For loved ones who assume the role of caregivers, this can profoundly affect their personal and professional lives.

Caregiver Impact

Caring for people living with dementia is a job that often falls upon close family and friends. While many loved ones are willing to do this hard work, it often leads to caregiver burden. Caregiver burden is the emotional, physical, and social impact felt by family, professionals, or anyone that cares for an older adult. Caregiver burden is highest amongst caretakers of dementia patients – and most of these caregivers are unpaid family caregivers. In 2019, family members provided 18.6 billion hours of unpaid care to people living with Alzheimer’s Disease and other dementias, which has an estimated value of $244 billion. 

Alzheimer’s Association, 2020

Source: Alzheimer’s Association, 2020

Compared to other caregivers, caregivers of people living with dementia may be forced to drastically change their lives to care for others. For example, family members may have to work part-time or quit their job entirely. Or leave their homes to move in with their loved ones.

Caregiver Supports

Like the adage says, “Self-care is never a selfish act.” But taking care of someone can be a full-time job. Many times, due to conflicting schedules and emotional guilt, caregivers do not prioritize taking time for themselves. This can impact their physical and mental health, impairing their ability to provide quality care to their loved one.

The best way to support caregivers is to provide resources that allow them to take breaks, communicate regularly with their own support network and doctors, and keep them organized. Many entities – including non-profits, for-profit companies, and the government – are seeing the value in providing new supports to family caregivers.

One vital caregiver support is respite care, which is short-term relief for caregivers that can be set up through a home care agency, care facility, or an adult day program. There are associated costs for respite care, most of which are not covered by medical insurance. But many public agencies, like the federal Eldercare Locator, have extensive directories to assist in finding practical options.

Another way to help people experiencing caregiver burden is through caregiver support groups. Caregiver support groups are a space to share experiences, receive advice, and learn about beneficial resources. Caregivers can now find a support group online through organizations like The Caregiver Action Network (CAN). Mobile applications like Caring Village have also made it easier than ever to stay connected to family and organize the care of a parent, for example, with schedules and assigned roles.

Beyond increasing support, technology has also provided practical solutions to manage the health and safety of patients living with dementia. Companies like Aloe Health Care, specialize in senior in-home monitoring devices that can detect falls, monitor temperature and air quality, and call emergency services. Other tech companies have also developed wearable vital remote monitoring products to track blood pressure and heart rhythm. Some devices, like BioIntelliSense, allow for data to be transmitted and reviewed by clinicians in real-time to provide alerts when patients need medical follow-up.

When it comes to caregiving it truly takes a village. With millions of people becoming caregivers every year and the continued growth of the aging population, businesses, communities, and non-profit organizations are perfectly primed to provide the tools and support needed to families across the country.

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