Alzheimer’s, Caregivers, and Giving Tuesday
By Kathleen McHugh Akbar LCSW, from information provided in the National Association of Social Workers - California Chapter, professional continuing education course entitled Alzheimer’s: Every Minute Counts
As defined by the Alzheimer’s Association, “Alzheimer's disease is a type of dementia that causes problems with memory, thinking, and behavior.” Alzheimer’s is a progressive disease with no cure.
The disease begins with minor memory loss and, if the person lives long enough, gradually progresses until there is a complete loss of self. As the disease progresses, the part of the brain that controls emotions is gradually destroyed. Personality changes occur and are often accompanied by fear, anger, and paranoia. As the disease continues to advance, individuals might no longer recognize family or friends. They lose the ability to communicate and can have trouble swallowing and breathing. Eventually, all body systems shut down and the person dies. This process takes a huge toll on the patient, their family, and caregivers.
Those with Alzheimer's live an average of 8 years after their symptoms become noticeable to others, but people might live with the disease for as long as 20 years, depending on age, health conditions and other factors. This can be a slow, long arc of illness for their family caregivers.
It’s estimated that 16 million Americans provide unpaid care for people with Alzheimer’s or other dementias, and Alzheimer's takes a devastating toll on caregivers. Caregivers have been described as the “hidden patients” because of the impact on their physical and emotional health. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties.
Alzheimer’s has also been referred to as “the long goodbye.” In the later stages of the disease, patients forget spouses and children, forget the lives they led and their careers, and are unable to hold a conversation. However, the caregivers’ feelings of grief and loss are often overlooked because the focus is on addressing the immediate day-to-day care needs of the Alzheimer’s patient, leaving minimal energy or time to focus on the psychological needs of the caregiver.
I’ve seen anticipatory grief and loss commonly experienced by the patient and family members. Primary caregivers often experience an overall pervasive sense of loss. Caregivers lose their loved one, in the sense that their personalities and their abilities deteriorate. There’s a loss of companionship and a loss of the future. There’s a loss of mutuality in the relationship--it turns into one where care is only provided in one direction. There’s loss of communication--it can be difficult to not go to your parent for advice anymore, or spouses who talked mostly to each other are no longer able to do so. There are role reversals where the adult child takes on the parental role for the ill parent with dementia.
These losses all foreshadow the ultimate losses that occur with death. For loved ones, watching someone with Alzheimer’s disappear and become a mere physical shell is challenging and difficult, and the anticipatory grief can last from diagnosis until death.
It is clear that caregivers deal with anticipatory grief and loss, and significant stress. Signs of caregiver stress may include irritability, anger, frustration, social withdrawal, decreased concentration, depression, anxiety, sleep disturbances, resentment, and substance use. It is important to explore potential ways of coping.
For caregivers, some helpful approaches to coping with Alzheimer’s caregiving stress and anticipatory grief include:
support groups
online groups or forums
keeping a journal
seeking professional counseling
scheduling fulfilling social activities
seeking respite care to allow for the caregiver to take time off
There already are 5 million Americans living with Alzheimer’s. The numbers of people living with this disease is expected to skyrocket as the Baby Boomers age into the period of greatest risk - by 2050, the number of Alzheimer’s patients could rise as high as 14 million.
Of the total lifetime cost of caring for someone with dementia, 70 percent is borne by families—either through out-of-pocket health and long-term care expenses or from the value of unpaid care.
Currently, Alzheimer’s and other dementias cost the nation and Americans $305 billion. By 2050, these costs could rise as high as $1.1 trillion. According to the PBS documentary Alzheimer’s: Every Minute Counts, “It’s going to sink the healthcare economy, and in turn, sink the national economy… to avoid that, we have to fund the research to find the cure.” (Alzheimer’s: Every Minute Counts, PBS documentary)
I created a fundraiser on my Facebook page for 2020 Giving Tuesday, and you can also donate money to the Alzheimer’s Association. I created this fundraiser because Alzheimer's has affected my own family members, my former hospice patients, and I currently support Alzheimer's family caregivers in my therapy practice. I see these caregivers who give so much of themselves to their loved one and deal with so many difficult emotions throughout this prolonged journey, and I’m grateful that I get to support them in therapy.
Sources:
Alzheimer’s: Every Minute Counts, PBS documentary
National Association of Social Workers - California Chapter course entitled Alzheimer’s: Every Minute Counts