The Impact of Alzheimer’s Disease on the Caregiver

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Alzheimer’s disease is a form of dementia that causes abnormal changes in the brain, mainly affecting memory and cognitive function. For someone living with Alzheimer’s, the natural progression of the disease can interfere with activities of daily living (ADLs), and will eventually lead to full dependence on their caregiver (www.alz.org). Alzheimer’s disease is not a normal part of aging. It is called the “family disease” because the chronic stress of watching a loved one slowly decline takes a toll on the entire family. 

Caring for someone with Alzheimer’s disease can be all-consuming for the caregiver, especially as the tasks and responsibilities continue to change and become more involved as symptoms worsen. Listed below are caregiving statistics highlighted in the Alzheimer’s Association’s 2019 Alzheimer’s Disease Facts and Figures Report:   

  • Eighty-three percent of health assistance to older adults living in the United States comes from family members, close friends and other unpaid caregivers.
  • Forty-eight percent of all caregivers provide help to someone with dementia or Alzheimer’s disease.
  • Approximately two-thirds (63 percent) of dementia caregivers are women.
  • Twenty-five percent of dementia caregivers are also raising children under the age of 18.
  • One in three (34 percent) caregivers is age 65 and older.
  • In 2018, caregivers of people with Alzheimer’s or other dementias provided an estimated 18.5 billion hours of unpaid care in the United States – valued at $233.9 billion.

General Care-giving vs. Dementia Care-giving

While the caregiver of a typical aging adult may be called upon to occasionally assist with tasks such as driving, shopping  and helping out with household duties, the burden of care for an Alzheimer’s caregiver is significantly higher – requiring hands-on assistance with ADLs such as bathing, dressing, eating, coordinating health care activities, and managing finances. The magnitude of providing this level of care on a 24hr basis can be completely overwhelming for the caregiver – draining them emotionally, physically, mentally, and financially. Elevated levels of stress and anxiety can also lead to sleep deprivation, social isolation, and clinical depression.

Emotional and Mental Health

Studies conducted by the Alzheimer’s Association reported that 45 percent of caregiver respondents indicated that they found the work of caring for someone with dementia rewarding. This was largely contributed to the emotional connection of sharing memories and living in- the- moment with the patient. However, nearly half of all dementia caregivers (49 percent) indicated that providing care to a person with dementia is highly stressful. This is compared to 35 percent of caregivers of people without dementia. Dementia caregivers also reported experiencing extreme feelings of guilt and remorse for being angry (at the situation), short-tempered with their loved one, and having to make difficult decisions on their behalf such as placement in long-term care facilities and hospice care.

Physically

The strain and physical demands of caring for someone with Alzheimer’s disease may have ill effects on a caregiver’s health and can usually be attributed to two primary reasons:  working long hours and neglecting their own health. If left unattended, seemingly minor health issues could escalate to more serious health problems including chronic stress, sleep deprivation, a lowered immune system, high blood pressure, and heart disease.  

Financially

As their responsibilities become more demanding, an Alzheimer’s caregiver may find their take home pay affected by the need to take time off work to coordinate care or attend medical visits. Still, other caregivers reported having to reduce their work hours, or take a leave of absence, or leave work altogether. The 2019 Alzheimer’s Disease Facts and Figures Report indicated that 57 percent of dementia caregivers reported needing to reduce their work hours due to care responsibilities. Other financial obligations assumed by the caregiver include out-of-pocket expenses and deductibles not covered by the dementia patient’s healthcare provider.    

Self-Care

It can be difficult for a caregiver to see beyond the daunting list of tasks that you face every day, but the most important job of a caregiver is Self-Care. It is vital that a caregiver pay attention to their own needs, take time for their own health, and get emotional support and regular respite from their caregiving duties.  

Through research, the Family Caregiver Alliance (FCA) has  realized that caregivers experience lower stress and better health when they learn skills through a formal caregiver-training program and participate in a support group (online or in-person). The earlier a caregiver takes action to seek help, gather information and establish a support system, the better off they will be to take care of their loved one and themselves.

Caregiver Resources:

National Institute on Aging Care Giver Manual and the Spanish version: https://order.nia.nih.gov/sites/default/files/2017-09/caring-for-a-person-with-AD-spanish_0.pdf

FCA fact sheets: Caregiver’s Guide to Understanding Dementia Behaviors, and Dementia, Caregiver, and Controlling Frustration.

Contact Eldercare for your local services and support groups.

Write to Chrishun Brown at Chrishun_m_brown@rush.edu

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