Dementia caregiving comes with a lot of questions. Here are the answers to some of them.
Dementia refers to a progressive neuro-cognitive impairment that interferes with daily function. According to Jason Karlawish, author of The Problem of Alzheimer's, "Alzheimer's disease is one of several diseases that cause dementia." It is the most common form.
Dementia caregiving is the practice of formally or informally assisting a patient who is struggling with any form of dementia. A caregiver can be anyone: a friend, family member, neighbor or sometimes even a group of people.
The time commitment to be a caregiver is usually significant as dementia patients are very dependent on the assistance of others. In dementia caregiving the primary responsibility is to help maintain a safe environment for the patient and assist them in tasks that are too difficult for them to perform themselves such as eating, bathing, sleeping, reading, and cleaning.
Dementia caregiving can be rewarding, but it can also increase the chance for negative health consequences. These can include stress, depression, difficulty maintaining a healthy lifestyle, and staying up-to-date on recommended clinical preventive services (CDC, 2019). As the dementia population grows, so will the need for more dementia caregivers.
Centers for Disease Control and Prevention. (2019, November 25). Caregiving. Centers for Disease Control and Prevention. Retrieved November 23, 2021, from https://www.cdc.gov/aging/caregiving/index.htm.
According to U.S. National Library of Medicine National Institutes of Health, the majority of caregivers for people living with dementia (PLWD) are family and friends. The NIH article states, “The largest proportion of those caregivers was spouses, followed by children and children in-law, mostly female. The typical profile of a dementia caregiver is a middle-aged or older female child or spouse of the person with dementia."
The article explains that, in the U.S., 60 percent of unpaid caregivers are typically female relatives. The number of male caregivers have been increasing and count for approximately 40 percent of unpaid caregiving support.
Family caregivers need support for a variety of reasons. As the dementia progresses in a person, it affects their family, especially the members caring for them.
According to Caregiver.org, Alzheimer’s, specifically, is called a family disease because of the chronic stress it instills in the family/caregiver of a PLWD as the disease progresses. It doesn’t help that caregivers are too busy taking care for their person to pay attention to their own mental health. Support groups help caregivers by providing tips for interacting with their person among other helpful things, but also provide a social outlet for caregivers that find themselves in isolation.
The term "dementia" comes with its own stigma, stereotypes and judgment. As with other stigmas, the stigma surrounding dementia stems from a lack of education and awareness about the true nature of the condition. A growth in the public's understanding of it can lead to destigmatization.
According to the National Institutes of Health, “Dementia-related stigma can cause significant negative effects such as low self-esteem, isolation, poor mental health, decreased quality of life in PWD and increased negative impact of supporting someone with dementia.” The stigma can delay some people from seeking a diagnosis and receiving medical care. For family caregivers of PLWD, the stigma can delay or prevent them from seeking help for their feelings of depression and isolation.
According to Assisting Hands Home Care, the difference between family caregivers and paid caregivers is that family caregivers share a history with the care recipient. A professional may only know the PLWD for a few weeks or months.
Qualified medical professionals like nurses and at-home health aides possess specific skills. They are trained to monitor the care recipient’s vital signs, mental well-being and medication regimen.
Family caregivers may find themselves under greater emotional stress than paid caregivers because their lives revolve around caring for their PLWD. Professional caregivers can leave at the end their shift, whereas family caregivers often work around the clock.
Family caregivers have limited time to socialize with friends, work or even talk to other family members. Professional caregivers are often very devoted to their work, but they can give themselves more time than family caregivers.
There are a number of responsibilities that family caregivers must shoulder in order to care for their PLWD. According to Assisting Hands, some of these tasks include:
- Transporting the care recipient to important doctor visits
- Monitoring the care recipient to ensure he/she is safe and does not wander away
- Establishing daily routines like bathing, setting meal times, clothing, etc.
This level of constant care can affect a caregiver's well being. According to a study done by the NCBI, caregivers have reported that they have suffered from higher levels of stress, anxiety, depression, and low self esteem. The rigors of everyday caregiving can be overwhelming.
Dementia caregiving is different from other types of caregiving. One reason is that dementia caregivers must bear constant witness to the increasing deterioration of the PLWD. This deterioration can last anywhere from four to 20 years. As such, according to the CDC, family caregivers of people living with Alzheimer’s and related dementias are at greater risk for anxiety, depression, and a lesser quality of life than caregivers of people with other conditions.
Family caregivers are mentally, physically, emotionally, socially, and financially affected by their loved one's dementia. Dementia takes a toll on both the person living with the dementia and the family caregiver.
According to the CDC, the impact of providing care involves increased levels of depression and anxiety, a decline in their health, a compromised immune function, higher risk of using more psychoactive medications, and an increased chance of having an early death. Family caregivers are under a lot of stress and often have to make difficult decisions. It takes a toll to see a loved one’s mind and memory decline and can be especially difficult when the caregiver does not have a healthy hobby or outlet to reduce their stress.
In regard to their social life, many times family caregivers will give up their own life by sacrificing their time and hobbies in order to provide care. As a result, caregivers may not have as much of a social life which could lead to negative impacts such as depression. According to First Light Home Care, dementia also affects family finances as the family caregiver often pays for significant out-of-pocket costs and some caregivers have had to quit their jobs or reduce their work hours in order to become a full-time caregiver.
About 5.8 million people in the United States have Alzheimer's and related dementias. Of that total, 5.6 million of them are 65 or older, and approximately 200,000 of them are under age 65 with younger-onset Alzheimer's.
Dementia care in the United States is very costly. The Alzheimer’s Association estimated that the total cost of Alzheimer’s and dementia care in the U.S. in 2020 was $305 billion. The individual costs are also substantial. Over a period of five years, dementia care will cost over an estimated $287,000 for each person living with dementia, while medications alone cost an estimated $3,000 per year.
According to the World Health Organization (WHO), more than 55 million individuals worldwide have dementia, a neurological condition that causes them to lose their memories and costs the global economy $1.3 trillion every year. According to the report, one out of every four nations has a national strategy in place to help dementia patients and their families, and governments are being urged to rise to the public health issue.
To Find Out More
Below is a list of recommended resources to learn more about caring for a person living with dementia (PLWD).