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5 Facts About Dementia Caregiving

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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 is also reporting 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, and more. 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 but rather with a family member. Most Americans aged 65 or more 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 care requirements are often needed 24/7 for years. The Alzheimer's Association (alz.org) Fact Sheet reports that in 2020 caring for those with Alzheimer's and other dementias cost American society an estimated 305 billion dollars. While much of this cost is born through Medicare and Medicaid spending, 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. Typically, a caregiver for a loved one with dementia will provide care one to four years longer on average than caregivers of 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 nearly 24/7 while still maintaining roughly full-time work. Since an average dementia caregiver spends over eleven thousand dollars a 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.  And if you are outside of Florida, please contact an experienced Elder Law Attorney (preferably one that is Board Certified in Elder Law) to assist you.  

Jason A. Penrod is only the 20th attorney to be Board Certified as an Elder Law Expert by the Florida Bar and the National Elder Law Foundation.  He is the founder of Family Elder Law (www.familyelderlaw.com) which has offices in Lakeland, Lake Wales, and Sebring, Florida.

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