Five Facts to Know About Dementia Caregiving
Dementia, including 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 that caregivers routinely say, "Nobody really understands how hard caring for a loved one with dementia is!"
Most Care Provided is for Someone with Dementia
Nearly half of all people who provide care do so for someone with dementia. Statistics show that 48 percent of caregivers are providing for those who have Alzheimer's Disease, Vascular Dementia, Lewy Body Dementia, and other similar diseases. 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.
Most People with Dementia are Not Living in Nursing Homes
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 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.
Care Requirements are Needed 24/7
Dementia, in particular Alzheimer's, is the most expensive disease in America, costing more than heart disease and cancer. This is unsurprising as care requirements are often needed 24/7 for years. The Alzheimer's Association 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. According to the Mayo Clinic, 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.
Dementia Caregivers Work Multiple Hours a Week
The majority of dementia caregivers are still working in formal employment, with 60 percent of dementia caregivers 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.
Dementia Caregivers Tend to Experience Stress and Anxiety
Finally, 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, contact us or request a consultation and we can help navigate how to find appropriate care, how to pay for it, and how to protect your home and savings.