Five Facts to Know About Dementia Caregiving

Dementia, in particular, the prevalence of Alzheimer's Disease in the American population, is creating difficult caregiving experiences for the family members who are primarily responsible for providing care. Even though you understand your loved one's dementia behaviors are a symptom of the disease and not intentional or personally targeted to you, coping with them is often emotionally, financially, and physically challenging. Psychology Today reports caregivers routinely say, "Nobody really understands how hard caring for a loved one with dementia is!"

Psychology Today also reports the following five facts that you should know about dementia caregiving, particularly since its incidence is increasing in the United States. The first fact is nearly half of all people who provide care do so for someone with dementia. The statistic is 48 percent of caregivers are providing for those who have Alzheimer's Disease, Vascular Dementia, Lewy Body Dementia, or another form of dementia. Additionally, dementia is typically not the only ailment a loved one suffers from, and dementia can have long phases from preclinical to its last stage, making caregiving a long-term commitment. The complexity, hours, and level of care needed throughout the stages of dementia are staggering.

A second fact about dementia caregiving is that most people with dementia are not living in a nursing home or assisted living facility but rather with a family member. Most Americans aged 65 or older live in the community, with only about 4.5 percent (roughly 1.5 million) of older Americans living in nursing homes and 2 percent (1 million) in assisted living facilities, according to the National Institutes of Health (NIH). These home care providers are more than two-thirds women (67 percent), and more than one-third of these are daughters.

Dementia, in particular Alzheimer's, is the most expensive disease in America, costing more than heart disease and cancer. This third fact is unsurprising as 24/7 care is often needed for years. An Alzheimer's Association ( Fact Sheet reports that in 2020, caring for those with Alzheimer's and other forms of dementia will cost American society an estimated 305 billion dollars. While much of this cost may be covered through Medicare and Medicaid, for caregivers, there is still an out-of-pocket expense that is nearly twice that of caregivers providing care for other conditions. Caregiver payouts can include medical care, personal care, respite care, household expenses, and more.

Additionally, the rate of progression of dementia disease varies widely. On average, a person with Alzheimer's will live between three to eleven years post-diagnosis. Yet there are some cases where patients survive twenty or more years. On average, a caregiver for a loved one with dementia will provide care for one to four years longer than caregivers of people with other conditions.

The majority of these dementia caregivers are still working in formal employment. The fourth fact is 60 percent of dementia caregivers are working about 35 hours a week. Dementia caregivers are pushed beyond normal limits to provide a loved one's care while still maintaining full-time work. Since the average dementia caregiver spends over eleven thousand dollars per year out-of-pocket providing care, there is little wonder about the necessity of almost full-time employment.

Finally, the fifth fact is that dementia caregivers suffer higher rates of stress, anxiety, and depression than caregivers tending to other medical problems because of their enormous workload and responsibility. Dementia caregivers also experience more health problems than those caring for other medical diagnoses. It is easy to understand this is the case due to the high-level of caregiving, nearly full-time work, and expenditures that are expected of them.

These five facts about dementia caregiving outline the need for caregiver resources and encouragement. Dementia care providers must tend to themselves during their journey of caregiving to persevere. If you know a dementia caregiver or have one in your family, consider what they go through as it is profound. Listen to their stories. Ensure they receive education about the best ways to approach their intense workload, and help them identify national and local resources. Community support and understanding are essential for success in a dementia caregiver's journey.

If you or a loved one has been diagnosed with dementia, we can help navigate how to find appropriate care, how to pay for it, and how to protect your home and savings. We welcome the opportunity to talk with you further.

To discuss your options, call (402) 614-6400 today to schedule your free consultation with one of our experienced attorneys. Visit our website at

This article should not be construed as legal advice. Situations are different and it’s impossible to provide legal advice for every situation without knowing the individual facts.


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