November is National Alzheimer’s Awareness Month as designated by President Ronald Reagan in 1983.
November is also Family Caregivers Month. This is the third in a series of articles that will explore various aspects of Dementia/Alzhiemer’s including definition, diagnosis, caregiving and local support.
Caregiving refers to attending to another individual’s health needs. Caregiving often includes assistance with one or more ADLs (Activities of Daily Living; such as bathing and dressing). In addition to assisting with ADLs, almost two-thirds of caregivers of people with Alzheimer’s and other dementias advocate for their care recipient with government agencies and service providers (64 percent), and nearly half arrange and supervise paid caregivers from community agencies (46 percent).
All caregivers of people with Alzheimer’s – both men and women – face a devastating toll. 80 percent of care provided in the community is provided by unpaid caregivers (most often family members), while fewer than 10 percent of older adults receive all of their care from paid caregivers.
In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $220.2 billion. This number represents an average of 21.9 hours of care per caregiver per week, or 1,139 hours of care per caregiver per year. More than three in five unpaid caregivers are women; and there are 2.5 more women than men who provide on-duty care 24-hours a day for someone with Alzheimer’s. Furthermore, among women caregivers who also work, 20 percent have gone from working full time to part time because of their caregiving responsibilities.
The National Alliance for Caregiving (NAC) found that 30 percent of caregivers had children under 18 years old living with them; such caregivers are sometimes called “sandwich caregivers” because they simultaneously provide care for two generations. Nearly 15 percent of caregivers are long-distance caregivers, living an hour or more away from their loved ones. Out-of-pocket caregiving costs are nearly twice as high for long-distance caregivers compared with local caregivers.
Impact on Caregiving
Caring for a person with Alzheimer’s and other dementias poses special challenges. For example, people with Alzheimer’s disease experience losses in judgment, orientation and the ability to understand and communicate effectively. Family caregivers must often help people with Alzheimer’s manage these issues. The personality and behavior of a person with Alzheimer’s are affected as well, and these changes are often among the most challenging for family caregivers. Individuals with dementia may also require increasing levels of supervision and personal care as the disease progresses. As these symptoms worsen with the progression of a relative’s dementia, the care required of family members can result in family caregivers’ experiencing increased emotional stress, depression, impaired immune system response, health impairments, and lost wages due to disruptions in employment, and depleted income and finances.
More than 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, and more than one-third report personal health problems as a result of their caregiving efforts. Due to the physical and emotional toll of caregiving, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own in 2013.
The next and final article will discuss available LOCAL support for Alzheimer’s.