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Caring for a loved one with Alzheimer's or Dementia

According to the Centers for Disease Control and Prevention (CDC), in the United States, approximately 5.8 million people are living with some form of dementia.

According to the Illinois Department of Public Health, in 2020, there were 230,000 people over 65 years of age living with Alzheimer’s disease or a related dementia in Illinois. This figure is projected to reach 260,000 in 2025, a 13% increase. Simultaneously, there is an increasing shortage of direct care providers in the aging, disability, and public health networks. In 2021, approximately 383,000 Illinois caregivers provided more than 486 billion hours of care to someone living with a dementia. That unpaid value of care is more than $8.8 billion.

Dementia is defined as a decline in mental ability that is severe enough to impact an individual's daily life. This means having new problems with everyday activities and may or may not include memory dysfunction.

Dementia refers to the group of symptoms that occur when the brain is damaged by disease. A diagnosis of dementia requires impairment in two (2) or more core mental functions: memory, language skills, visual perception, ability to focus and pay attention, ability to reason and solve problems. There is no cure for dementia; progressive mental and cognitive decline is inevitable.

If you suspect a loved one is living with dementia, early diagnosis can provide an opportunity for early interventions and care and allow the individual to participate in the decision-making process. Always seek the counsel of a healthcare provider, since some conditions presenting as dementia are reversible, such as: infections and immune disorders, diet, chemical imbalances, mismanagement of medicines and/or drug interactions, alcohol abuse, depression, toxins, carbon monoxide, isolation/sensory deprivation.

Resources for Caregivers

  • Training for Caregivers: Caregivers can complete online training videos and read information to better understand how to care for a loved one with Alzheimer’s or dementia. There are several organizations that offer free, 24-hour access to training videos and other materials including The Alzheimer’s Association, SIU School of Medicine Smith Center for Alzheimer’s Research and Treatment, UCLA Health, and the Family Caregiver Alliance.
  •  Assessment of Caregiver Needs: AAAs can refer caregivers to other programs after assessing the caregiver’s needs using a tool called TCARE. These programs can include Savvy Caregiver®, Stress-Busting Program for Family Caregivers™, support groups, counseling services, and gap filling services. If you are interested in learning more, contact your local Area Agency on Aging (AAA) using the map tool.
  • Respite: Respite services are intended to provide caregivers with short-term relief; the length and locations may vary, but respite may be provided for an afternoon, several days, at home or in a facility-based setting. If you are interested in learning more about respite services in your area, contact your local AAA using the map tool, or the Illinois Respite Coalition using the search tool.       

Resources for Older Adults Living with Dementia

Partnerships and Other Resources